Enbrel Lawsuits
Last Updated: August 2008 • 94 Comments
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The arthritis drug Enbrel has been linked to an increased risk of fatal infections, incluing tuberculosis and fungal infections. In May 2008, a “black box” warning was added about the risk of tuberculosis. In September 2008, the FDA added information to the “black box” warning about the risk of potentially fatal fungal infections, which were often going undiagnosed.
STATUS OF ENBREL LAWSUITS: Potential for legal claims are being evaluated for individuals diagnosed with tuberculosis before May 1, 2008 or who died as a result of an infection.
MANUFACTURERS: Amgen, Inc. and Wyeth
OVERVIEW: Enbrel (etanercept) is a Tumor Necrosis Factor (TNF) Blocker, which was approved in 1998 to treat various auto immune disorders, such as Crohn’s disease, rheumatoid arthritis, plaque psoriasis, psoriatic arthritis, ankylosing spondylitis and juvenile idopathic arthritis (previously known as juvenile rheumatoid arthritis). It is administered as an injection given either by the user or a caregiver.
There are three other TNF blockers currently approved in the United States, Remicade, Humira and Cimzia. When all uses are considered, including indications that Remicade is not approved for, Enbrel is the most widely useed TNF blocker.
ENBREL TUBERCULOSIS RISK: In May 1999, information was added to the warning label about a possible risk of serious infections, including sepsis, which has caused a number of deaths. In April 2008, this information was added to a “black box” which was more prominently displayed on the label.
The “black box” warning also included information about cases of tuberculosis associated with use of Enbrel injections. The FDA and manufacturers indicated that healthcare providers should screen their patients for latent tuberculosis before prescribing Enbrel.
Tuberculosis, also known as tubercle bacillus or TB, is a deadly infection which commonly attacks the lungs (pulmonary TB), the central nervous system, circulatory system, bones, joints or the skin.
Symptoms of tuberculosis could include:
- Chest Pain
- Coughing Blood
- Fever, Chills or Night Sweats
- Appetite Loss or Weight Loss
- Fatique
ENBREL CANCER SIDE EFFECTS: In June 2008, the FDA released an early communication about an ongoing safety review involving Enbrel and a possible association with the development of lymphoma and other cancers among children and young adults and an Enbrel black box cancer warning was added in August 2009.
At least 30 reports of childhood cancer were received by the FDA involving the use of TNF blockers. Other medications indicated in this early communication were Humira and Remicade.
Approximately half of the cancers seen in all children and young adults taking TNF blockers were lymphomas, including bother Hodgkin’s and non-Hodgkin’s lymphoma, which is a cancer of cells in the immune system. Lymphoma is not a recognized complication of JIA (Juvenile Idiopathic Arthritis) or of Crohn’s disease. Other cancers reported included leukemia, melanoma and solid organ cancers.
ENBRAL FUNGAL INFECTIONS: A number of users who were receiving TNF blockers, such as Enbrel, have experienced fungal infections, such as histoplasmosis, blastomycosis and cocciioidmycosis. In several of these cases the infection resulted in death.
In September 2008, the FDA issued an alert to healthcare providers to provide new information about the risk of Enbrel fungal infections. At that time the agency also indicated that new information will be added to the Enbrel black box warning to ensure that doctors and consumers are aware of the risk, especially for those who live in or visit areas where fungus is prevalent.
Unfortunately, many cases of fungal infections from Enbrel go undiagnosed by doctors, since the symptoms are similar to the flu. Symptoms could include cough, fever, fatigue, loss of weight, sweating and shortness of breath.
Pingback by Enbrel side effects could include risk of serious infections, tuberculosis — AboutLawsuits.com on 10 May 2008:
[...] Enbrel (etanercept) is an injection prescribed for treatment of rheumatoid arthritis, plaque psoriasis, psoriatic arthritis, ankylosing spondylitis and juvenile idopathic arthritis. It is marketed and sold by Amgen, Inc. and Wyeth, and was originally approved by the FDA in 1998. [...]
Pingback by Remicade Lawsuits — AboutLawsuits.com on 5 June 2008:
[...] States, and has been used by more patients world-wide than the other medications in the same class, Enbrel and Humira, combined. It is a blockbuster drug for the pharmaceutical giant, Johnson & [...]
Pingback by Humira Lawsuits : AboutLawsuits.com on 5 September 2008:
[...] In June 2008, the FDA released an early communication about an ongoing safety review involving Humira and a possible association with the development of lymphoma and other cancers among children and young adults using the TNF blockers. At least 30 reports of childhood cancer were received by the FDA involving the use of TNF blockers. Other medications indicated in this early communication were Remicade and Enbrel. [...]
Pingback by FDA Investigates Possible Association of Enbrel, Humira and Remicade with Lymphoma Cancer in Children : AboutLawsuits.com on 5 September 2008:
[...] among children. The agency is investigating reports of children and young adults using Remicade, Enbrel and Humira who developed lymphoma and other [...]
Pingback by Rheumatoid Arthritis Drugs Do Not Increase Cancer Risk According to New Research : AboutLawsuits.com on 29 October 2008:
[...] research suggests that Enbrel, Remicade, Humira and other biologic TNF-blockers widely used to treat rheumatoid arthritis do not [...]
Comment by hugh on 17 December 2008:
my wife used embrel in 2005 she was later diagnoised with chirrosis of liver she was in the hospital april 13 till april 22 2008 she was diagnoised with blood comtionating she passed away july 25 2008 i fell it was from embrel because she had hepatis when she was put on embrel
Comment by Jackie Fletcher on 24 December 2008:
My father started using enbrel early 2006 and then in 2007 starting having blood problems and was diagnoised in February he had AML which is a form of Leukemia. He passed away on June 27, 2008. I believe this stemmed from a use of enbrel.
Comment by Mary on 10 January 2009:
My husband used Enbrel for several years for rheumatoid arthritis, injecting it into his stomach twice a week. He became very ill in the spring of 2006, and doctors did countless tests to determine the cause. Just days before he died, they discovered that he had stomach cancer. I really believe that the Enbrel was responsible. I’m looking for a class action lawsuit.
Comment by chris on 20 January 2009:
I started using Enbrel for RA in 2001. It worked. Later, 2006, I was diagnosed with Non-Hogkins Lymphoma. Cause – Enbrel?
Comment by Bonnie on 6 February 2009:
I was injecting enbrel for about two years for my RA and posorisis. I had a very bad cold and just happened to mention to my Dr. that my lymph glands in my groin and neck were swollen.After my exam it was discovered that my glands under my arm and everywhere were swollen. I was sent to a cancer Dr. right away. After two different biopsy’s from my grion and underarm it was determined I did not have cancer.I then started to have tremors. First my hand then my head then my whole body. I also would experience internal treamors. Now I am on medication for that…which I will have to be on for the rest of my life……………Who Knows??????????
Comment by Bonnie on 6 February 2009:
Please let me add how sorry I am for all of your losses and illnesses. It makes what I have seem not soooo bad………
Comment by Kim on 13 February 2009:
My husband had been taking Enbrel for about 3 months for psoriasis. He was injecting Enbrel into his stomach as directed by his dermatologist. During his 3rd month, he started having tremors in his hands and his tongue. He lost his taste and was having dry mouth along with thick white saliva. He has also been experiencing intense stomach cramps. He reported symptoms to his doctor and they told him to quit taking the medicine. He is still having these symptoms. He was ok before he started taking this Enbrel.
Comment by Jack on 17 February 2009:
My mom contracted pancreatic cancer from enbrel and she is going to die in 1 week and the doctor who gave it to her would not talk to her when she called for help tanks
Comment by Patty on 26 February 2009:
My husband has been taking Enbrel for 4 years for his RA. He was first diagnosed with interstial lung disease last year, the Enbrel was reduced and we were told his lungs had cleared up. He again started taking the Enbrel 2X weekly. About a month ago I noticed his breathing sounded strained, he went through several tests which indicated his interstial lung disease has returned and today was diagnosed with tuberculosis.
Comment by alice on 27 February 2009:
Im 53., was taking enbrel for about three years or so. julyof 2007 started having back pain. After many tests and finally becoming paralyzed from waist down end of August. Emergency room led to back surgery to remove mass pushing on spinal cord at T10 T11. Time at rehab to learn how to walk again . Very frustrating and scary. Am walking with help of cane. Am disabled now. Was this a fluke or was it the medicine? Any other stories out there close to mine?
Comment by Christina on 1 March 2009:
I know this is not so bad compared to some of these stories but I started taking Embrel and had only been taking the injections for about 3 or 4 months when I got a MRAS staph infection. I stop taking the shots right away..but needless to say it has been almost 3 years and I still get staph infections. I have been put in the hospital 3 times, have had too many to count cut out and have had close to 250 actual infections(most times more than one at a time)! The doctor tells me that because of the Embrel and getting the MRSA while taking the shots, my immune system will never be the same. I am in my twenties and will suffer from these the rest of my life…and that the staph infections are very serious and could one day kill me. It was not worth it to me to have clear skin and then have to deal with very painful, horrible thing. I now have several scars and I am in pain most of the time! And to make things worse, when my psorisis came back, it came back much worse!!!
Comment by Sharon on 21 March 2009:
My sister has psoriatic arthritis and has been on Embrel for some time. She is now in the hospital with Acute Pancreatitis. Are there other cases out there?
Comment by Chris on 27 March 2009:
My father had RA ( rheumatoid arthritis ) and had been on Enbrel for at least a year, last december his overall health deteriorated. He experienced fatigue, weakness, chest pain, the night sweats, and at the end of december he was hospitalized. They treated him for pneumonia ( what they thought he had ), multiple organ failure, breathing treatments and had a tube in his mouth ( feeding tube, etc ). this lasted close to 3 weeks, when they decided to do a tracheostomy to help him breathe, 3 days after that they said pretty much nothing can be done. In essence, every time they cleared up an infection another one emerged. To this day they never even looked for a fungal infection and IMHO Enbrel is the root cause for his death. Before these symptoms, he wasn’t in perfect health, but he was coming along well. Has anyone else had similiar experiences with a loved one?
Comment by linda on 25 April 2009:
i have psoriasis arthritis, i`ve been taking enbrel for about 3 years now, it has helped me alot, except i still stay sore 24 seven though, sore everyday, but the shot helps some, but i get sick with a cold easy now, and have had mecer staff twice, in the hospital the first time with it, other then that i have no other probblems with enbrel, so far, seems to help, if it want for enbrel i would be in a wheel chair right now,
Comment by linda on 25 April 2009:
just want to share, i mean though enbrel has helped me so much, but don`t want to stop taking it, unless i keep getting sick, but so far haven`t had to go back to the hospital from taking enbrel but just when i had mrsa (mercer staff infection) i know i can still keep getting mrsa, but what has helped me so far to, i take a little travel size bottle of lysol with me everywhere i go, and when i have to use the bathroom, plus i take hand sanitizer with me, so i try to be careful around germs, they are every where, exspecally in the stores to, but just don`t know what to do about enbrel from what i`am reading like i said, in my other posts up here , so far for now i will continue taking it till i can`t anymore as long as it is still helping me, cause when i go off it, when i`am sick with a cold i have to, then i have infumation in my eye (arthritis) till i get back on it, then it clears up, so i lose either way it seems like,
Comment by Mark on 30 April 2009:
Susan had Lupus. In Approx. February of 2006 Dr Thomas Oven of Binghamton NY started her in Enbrel. Although the pain and inmobility caused by her Lupus was greatly reduced. Susan began a steady decline in health. In August of 2007 she developed Cellulitis resulting in an extended hospital stay. Her health became a constant battle. She developed Shingles. Followed by kidney stones and later Salmonella. She also developed urinary tract infections. By December she had open sores in her mouth and covering her body along with her hair falling out. In February of 2008 we seeked out a second opinion from another Rheumatogist in Syracuse at the urging of her regular Doctor. Dr Hong Yu also of Binghamton NY. The doctor in Syracuse told us they never give Enbrel to Lupus patients and wanted her to start on Orencia instead. Susan went off the Enbrel and was to wait 6 weks before starting Orencia. Before the 6 weeks were up, on the weekend of March 8th & 9th Susan developed Flu like symptoms. She steadily got worse. An ambulance was called around noon on March 11th. Susan died in route to Lourdes Hospital in Binghamton NY. Her cause of death was listed as CARDIAC ARREST/RESP FAILURE/HYPOXEMIA/SEPSIS AND DEHYDRATION.
Comment by Vicki on 31 May 2009:
I feel my fathers pancreatic cancer has a direct correlation to enberl medication.
Comment by Frank on 11 June 2009:
My wife was taken enbrel for three years and after a year and half battle with cancer she past away on Dec 2007.Because her imune system was shot she could not fight the cancer which had a 90% cure rate .
Comment by Jennifer on 22 June 2009:
I’ve been on Enbrel for about 18 months for RA. I now have tremors, headaches, fatigue and an MRI found 2 spots on my brain. Now my Neurologist wants me to have a Spinal Tap to check for cancers and more likely MS. Could this really be the Enbrel? I was a teacher and have 3 young kids. I can’t teach anymore which makes me so sad. Just my daily life leaves me completely exhausted and in bed before 9. My husband is getting frustrated with me. I just turned 38. I’m afraid to go off of the enbrel because it does help my RA.
Comment by Leasa on 22 June 2009:
I have been on Enbrel twice now. I find these postings interesting however, I do not see my specific situation. I began taking Enbrel for severe psoratic arthrits in 2007. After only a few injections I began having very bad night sweats. In three weeks time I tested positive for TB. I had to go off the drug and do 9 months of INH therapy. Because I have tried all other forms of medication and nothing else worked, the doctor at the CDC had my doctor put me back on Enbrel. I have only been on it for 2 weeks now, and I am questioning whether or not I have made the right choice. If you ask your doctor (which I have) I have gotten 7 different responses. Some of them say ABSOLUTELY NEVER TAKE AGAIN, and the others tell me that I will be fine. I cannot take INH again, and will always test postive for TB now, but I worry what will happen if I am diagnosed again with TB. I believe there is one other form of treatment but I was told that my immune system may not react to the medication. So what happens if I contract TB again and there is no available medication to treat me?
Comment by Leasa T. (again) on 22 June 2009:
I just wanted to add one more thing. In March 2009, I had my wisdom teeth come in. I am 40 yrs.old. I had to have them removed one by one due to severity (impacted). I had major complications with the first two, they became dr sockets which would not heal. Finally, I had the 3rd one removed in March 2009. IN 24 hours, I was in Intensive care fighting for my life. I was diagnosed with “Ludwigs Angina.” which is a severe infection which caused your airway to close. I spent 9 days in ICU and then went home for a month with a PIC line in my arm to have my husband administer IV antibiotics for 4 weeks, twice a day. Just wanted to add that to the scenario.
Comment by David on 3 July 2009:
1. we all went to our doctors because of pain and fear of what was happening with our body, we all wanted help any thing that would help.
2. Embrel came along, it seemed to work for most of us, I took it for years, minor sideaffects.
3. all these other problems are poping up, trigerd by embrel?
4. I know if I continued in pain, lack of movement and no desire to live
before I took embrel. it gave me years of pain free living. at age 55 I know if it isn’t AR that kills me some other form will, If one has to die let it be painless. I know it does not sound right, untill you hurt so bad you wish death as the only way out of the horrible pain, Embrel at the time was not a bad chance. I knew I had MS 10 years ago, they pulled me off embrel, in one month pain is back as strong as it left me three years ago. I have told my family no wheelchairs or bed ridden for this guy,
put me to sleep. My biggest fear is if I past AR or MS on to my childeren.
Comment by Julie on 8 July 2009:
I injected myself twice a week for four and a half years with Enbrel to treat psoriasis.
I considered myself very healthy. May30th 2008 I found a large mass on my neck and a few days later was diagnosed with lymphoma, and six months later congestive heartfailure.
I am 47,currently cancer free but, not sure what my future holds.
Comment by jeremy g on 5 August 2009:
hello, I have been taking enbrel since early 2005 almost 5 years , I was having trouble urinating so they checked my kidneys, well they found a tumor , I just had the tumor removed from my kidney , and it was cancer , the docter said i was lucky it was caught early, I am only 39, its crazy , I have a bad feeling that its from the enbrel , and I am afraid to start it again, but my life is so miserable without it, its a hard choice. i feel like giving up…
Comment by Jagdesh on 6 August 2009:
After using Embrel for about 2 years. I started to get headaches, dizzyness and loss of balance. I also started to get rashes on my head and face. Ihave seen numerous specialists and I was finally diagnosed with Lupus after a Dermatologoist too a biopsy of the rashes.
Comment by Itchyman on 15 August 2009:
Two years ago I was enrolled in a 24 week double blind research study for a NEW psoriasis drug (Ustikenumab). The other drug used in the study was Enbrel. After the Enbrel drug ended, I was given TWO injections of Usti and all of my lesions disappeared. However, after on 2 months of relief from psoriasis, it came back with a vengence and continues now after 2 years.
Like to know if ANYONE else participated in this clinical study and if they experienced similar or worse conditions.
I tend to believe that Enbrel exacerbated the few psoriasis lesions I had before the study, and causing other organs to fail and trigger the severe psoriasis, OR another skin disorder similar to psoriasis. Four derms say NO and keep giving salves and gels and UVB.
The new drug (Usti) is being held up by the FDA due to patent issues and lawsuits. This may be a blessing, but who KNOWS?
Comment by Mark on 24 August 2009:
I’ve been on enbrel for 5yrs . My RA is in remission I feel great and lift weights and walk 2 miles every day. I’m 56yrs old and would like to quit taking enbrel. My Dr. won’t even discuss this with me. I’m worried about side effects and my future health. Would like to hear from anyone with info to help me make a decision
Comment by judy on 24 August 2009:
I took Embrel for about 2 years. I was diagnosed with kidney cancer in December 08 and had my kidney removed. I had strong suspicions that Embrel caused the cancer. I am going to follow this because I never had any problems other than RA. If the FDA knows this stuff can cause cancer why would they allow it to be distributed.
Comment by Judith on 30 August 2009:
Like Mark,I have been on Enbrel for 5 years and would like to get off. I feel great most of the time with occasional flareups and bouts of iritis uvitis(very painful) and has left my vision impared in one eye. I would like to hear what others use for RA when they go off Enbrel
Comment by Kelly on 2 September 2009:
I took Embrel for 2 yrs. I have had AP for 22 yrs. I got MS from Embrel. Now I have so much to tell! I am sick all the time, I have lost so much weight, so so much more! Then they gave me Raptive, it helped more than anything. (I also take other things) They just took it away from me without even a warning(warnings said could have withdrwls) I guess it killed a few people(that is all they told me) now I am getting worse everyday. Not including other things I keep getting diagnosed with. I am looking for info or help. I have no money! This is a very long life story!
If you have similar story or info respond, maybe we can talk & exchange info..
Comment by John on 7 September 2009:
My Aunt recently passed away from wound infections she was not able to fight due to the destruction of her immune sytstem from taking Embrel . Does anyone else have experiences around Embrel and catastrophic supression of the immune system? Yes the warnings talk of issues but how can one predict an infection yet to come which will not heal because of the effect of the drug? While the drug gave my Aunt diminsihed pain from her Reumatoid Arthritis it also gave her a false sense of security and created an issue lieing in wait to complicate simple problems into becoming critical issues.
Comment by mark on 9 September 2009:
mark took double the recommended dose of enbrel with the approval of enbrel themselves and he was diagnoses with a cancerous tumor on his kidney. the doctors directy relate it to the use of enbrel. He was only 32 and had to have part of his kidney removed. This was after taking enbrel for only two years.
Comment by Dana on 9 September 2009:
My identical twin sister took Enbrel for over 5 years and thought it was the “wonder” drug. IT KILLED HER, She had a fever on 7/4/09 and after two swabs, was sent home. After the fever persisted they admitted her because her blood gas was low and her white blood cell count was high. Unable to find the infection, she was later diagnosed with the Influenza A virus. After almost one month in ICU her lungs collapsed she died on August 4, 2009 at the age of 45. (The ICU doctor did mention Pancreatic failure).
Although Enbrel cleared her psoriasis when nothing else could, it killed her. Please advise others to use caution and see an infectious disease specialist at the onset of any and all fevers. The doctors did not take her off enbrel after it was too late and she could not fight the virus.
Comment by C. Fischer on 1 October 2009:
I started using Enbrel for RA and Psoriasis in 2002. I stopped in 2006 when I started having problems with my balance. I went to a neurologist who said I had MS after having n MRI and showing lesions on my brain and spinal cord. Several of the Neurologists that I have spoken to have said that they are seeing more and more paitients who are diagnosed with MS after taking Enbrel shots.
Comment by Sheba on 6 October 2009:
I have been taking enbrel since 2002 and did not have any problems that i knew of until april 2007 was diagnosed with kidney stones,diverticulitis,etc because no one could find anything wrong. In dec 2008 it was determined that a had a spinal tumor pressing against my nerve causing me back pain.stomach pain and leg and foot numbess causing me the inability to drive since 11/08. I had a spinal laminectomy Jan 09 and was told i would have been paralyzed if it went undiagnosed. I have lost feeling in my feet that i wil never get back. i have back pains,muscle spasms and my story sounds similar to alice. Could this be enbrel related l
Comment by jessica on 8 October 2009:
i stared taking enbrel may-09 starting about the middle of sep-09 i lost felling on left side of body then now im numb from about my breast down & very stiff my left hand & arm are so numb & stiff i can’t use them .they did mri & found 3 lesions on my spinal cord & it’s inflamed,dr said it was from the enbrel.
Comment by Jaime on 10 October 2009:
I started out by taking injections of gold in 1987,I was diagnosed with R/A in 1986 which got worse as time progressed. By 1995 it got so bad i had to retire from my job as a correctional officer, after 22 years of service at Folsom state prison. My rheumatoid Artheritus continued to get worse and my rheumatoligist recommended taking Humera which i took, on his advice because he is one of the best in the Sacramento area. I took the Humera injections for several months and started to break out in hyves on my legs real bad. My rheumatolagist immediately told me to stop taking it and i did. Upon my next visit with him he said there was a new injectable drug on the market called Enbral and strongly recommended i start it’s use which i did, as i recall this was in approximately 2002 or 2003 I will have to check with him to make sure of the date i started. At any rate i started the injections twice a week and continued to do so until June of 2009 when i went to a protologist with what i thought was hemroids. He did a biospy and found i had Squama cell cancer of the rectom. He had me get a pet scan as soon as he could get it ordered and when i got it i found out i had non-hodgkins lymphoma which totally floored me. I then had to take chemotherapy for 4 months, and still have 33 treatments of radiation to go throughfor the squamas cell cancer starting Oct 26th 2009. Obviously my rheumatologist told me to stop taking Enbrel as it was the cause of my lymphoma cancer. I immediately stopped taking the Enbrel and will never take it again as i strongly feel it was the cause of not only the lymphoma but the squamas cell cancer as well. I also ended up in the hospital with a blood clot in my right leg and an irregular heart-beat which is most likely attributed to the Enbrel as well. Seems like all the things that have gone wrong with me in the last couple of years is related to the Enbral injections i was taking. Beware people these injections can certainly cause a lot of trouble for a lot of people. I really think i would rather be crippled than have cancer of two different kinds in my body and now fight for my life. I hope this message will open up people’s eyes about the use of Enbral and other drugs on the pharmacutical market. a lot of times we are in so much pain we don’t think to check into the side affects of the things we put in our bodies, unfortunately when they first put this drug on the market they didn’t warn us of the side affect of cancer… had that warning been given to me I feel quite confident i would have elected not to have taken it.
Comment by Carrie on 2 November 2009:
My daugther started taking Enbrel when she was 15 years old for JRA she took Methotrexate along with it. We were never informed of a cancer side affect and in March of this year she was diagnosed wth Leukemai. APML to be exact. She is in remission but it has been a hellacious year. They said that Enbrel was not linked to the drug until after she started taking it so that is why we were not informed. I think that there should be a law that anyone that takes a medication if new information is found like this they should have to send out a warning to all of the people that are taking it. It is ridiculous that they do not.
Comment by Karen on 8 November 2009:
Went on Enbrel for severe pustular psoriasis in September 2006 after 8 months of mtx not working. Felt great thought it was a miracle. In the past year was diagnosed with arthesclerosis high cholesterol had my gall bladder removed, a sphincterectomy on my dialted common bile dutc, NASH, was taken off Enbrel the beginning of July 09 have had a low grade fever since, joint pain that is unbearable, need MRI on my shoulder for severe pain and inmobility. exhaustion, had to quit my job, had a spot on my left templar lobe, have muscle termors and the 6 specialist have no idea what is wrong with me. CT scans MRI’s and numerous blood test and no real answers. Need info on withdrawal sysmptoms.
Comment by Susan on 19 November 2009:
I was diagnosed with RA in Jan 2006 and I was severe. Overnight onset and joint damage occuring rapidly.
I was horrified by the RA drug choices available. A research of RA on the internet revealed a number of causes that have been shown to put RA in remission when the cause is dealt with.
My rheumy didn’t buy it and was angry when I asked for a “safer” treatment approach which had been practiced for 50 yrs by Dr. Thomas M. Brown. He found bacteria in the synovial fluid joints which he believed were triggering the RA. The bacteria were CWD (cell wall deficient) so not the kind you could knock out with 2 weeks antibiotic.
He treated with low dose tetricycline drugs with minocin being the best.
This method is incredibly safe and has a 70% success ratio yet rheumatologists today ignore that treatment.
I chose it and found a rheumy who believes in infectious causes to auto-immune illnesses.
Perhaps the reason you guys have had adverse reactions to the Enbrel is because it allowed the CWD bacterias in you to flourish causing subsequent illnesses.
Study up on infectious causes to auto-immune disorders. Psoriaris is an exception here. It is believed to be a fungal based illness.
Comment by Vinnie on 20 November 2009:
My wife took Enbrel for several years for RA. A few years ago she caught a cold that went from sniffles to full-blown strep pneumonia with high fever in just a few days. She was taken to the hospital and died later the same day from septic shock and heart failure. I was told her body couldn’t fight the infection, likely because her immune system was so suppressed. When I informed her GP of her death, he told me that he’d heard of these types of septic shock cases occurring more frequently with Enbrel patients. This was prior to the newer “upgraded” infection warnings being issued in 2008.
Comment by Terri on 7 December 2009:
After 8 injections of Enbrel I developed extreme pain and stiffness in muscles of left leg, couldn’t walk without a cane as leg would “give out” and I feared falling. Went to E.R. and a doppler showed I had a cyst behind my knee. I had arthritis pain before and this was not acting normal like usual arthritis pain, muscles in entire leg cramped and got stiff. Used Enbrel 2008-2009 8 doses.
Comment by Brad on 17 December 2009:
Just a heads up regarding dosage. My wife and I experimented with her Enbrel dose before getting pregnant and found that she could take just one 25 mg shot every other week with the same effect as two 25 mg shots every week. That’s one quarter the prescribed dose. You may be able to save a lot of money if nothing else. Of course the drug company makes a lot more if you just take the massive dose they recommend.
Comment by Jamie on 28 December 2009:
My husband was diagnosed with AS in January of 09. He is 30 years old and seems to have the body of a 70 year old. His onset of AS was very sudden and abrupt. He was immediately put on Enbrel by his rheumatologist. He has been on it for almost a year now. He also suffers from reflux (not related to the Enbrel) and takes Nexium twice a day. Last month we had to take him to the ER due to severe abdominal pain. They did a MRI and noticed thickening of his intestinal wall and started talking Crohn’s disease. His gastro then did a colonoscopy and said he had suffered from Ischemic Colitis. Basically his colon was dieing due to loss of blood. Our question was why? We then went to a hematologist and they did tons of blood tests. Ruled out cancer, Crohn’s and any clotting disorders, but revealed his triglycerides were too high, and LDLs/HDLs were off the charts. Also, for the last month and a half he has developed a severe skin problem. It orginally started on his hands and has now spread to his entire body. It starts with the development of a pustule and then it pops and the skin dries out and peels and goes away, but more pustules keep appearing. Today a dermatologist tells him he thinks he has Pustular Psoriasis!!!! WILL THIS EVER STOP???? Reading these previous blogs scares the crap out of my husband and myself and makes us want to stop the Enbrel. All we can think is that all the weird conditions he keeps getting are due to the Enbrel. Prior to Decemeber of last year he was a perfectly healthy 30 year old man and now we just don’t know what to think. Has anyone else developed or seen this similar problems after being on Enbrel?
Comment by Frank on 5 January 2010:
I am very interested in this issue, I suffer with severe Rheumatoid Arthritis and take various different medications to alleviate the pain, In 2006 I was advised by my consultant to try a new medication ie Embrel (Etanercept) and after a number of medical checks started with the drug which I administerd myself. After 5/6 months I collapsed at home with severe abdominal & back pains. I was taken to hospital by emergency ambulance and ended in intensive care for 3 weeks with Acute Pancreatis. The Doctors blamed everything for this illness other than Embrel. I am convinced Embrel was the cause of my illness as I had never had any problems with my stomach in my life I was 65 at the time of my collapse. I now do not drink alcohol at any time and follow a strict dietary regime and have not taken Embrel since my collapse. Interestingly I had pointed out to the Doctors prior to going on this medication information that indicated there was a problem with this treatment but I was advised that everything was alright.
Comment by April on 5 January 2010:
Hi. I was 24 yrs old when I started taken enbrel. It had just come out and I was not responding to NO other treatments, that was around 2000 or 2001. It was my wonder drug and I didnt have any side effects that I remember being worth me coming off of enbrel. I was like anybody else, you wouldve never thought I had RA. Believe me before enbrel I had knee surgery’s etc. PAIN! is all I can say. In the early part of 2006 I notced a wart like thing on my elbow and tried to treat it. Time I saw my Rheumy I had several other places with small sore like things. He then thought it may be a good Idea to change to Humria, I agreed but thought it was odd seeing that I had been on enbrel for like 9 years and had never had any problems! That was not a good idea though I started taking Humria and it just exploded everywhere! I was pulled from that and was told that he thought that I was having a reaction to the TNF agent in them. I was then put on Orencia b/c it did not have the TNF agent in it, it worked off T-cells. My Rhuemy and my Dermatoligist worked on clearing me for 2 years! You name it and I tried it and nothing would work! THey were Very puzzled and finally told me I was in a small group of people who had done the same thing and because of that there was no research. I ooked like a leper and hurt and bleed it was the worst time in my life. Now the odd thing is what cleared me was something that shouldve hurt me, Remicade. It has the same TNF agent but for some reason it worked. It was the last straw, i had been on many things by then for my RA and my new Psoriasis condition. I agreed to try the Remicade under the agreeance that I would be put in the hosptial if I even looked like I was devloping a new spot. But it worked! I was thrilled and thought that my life was gonna go back to my normal! My skin cleared and is still mostly clear I do have scars that look like burns but the real isue is how my health is still out of control. I am almost 36 yrs old and in the last 2 years that I have been cleared I have had many other issues I feel is related to enbrel. My skin cleared but the rest of me has not. I now have Glacoma, and they think I have breast cancer. I was told by my surgeon too have double mastectomies, and that i could never really fight a cancer. Oh and I dont absorb vitamin D anymore my level is a 13. I am dark skinned, have a tanning bed and a pool so it is not from a lack of light. I would love to talk to anyone that is having the same problems. Thanks April
Comment by Leslie on 6 January 2010:
I statrted taking Enbrel in 1999, for Psoriatic Arthritis. In 2008 I was diagnosed with Stage III Melanoma. The canver was removed along with 22 lymph nodes, and then a year long interferon treatment. Now the doctors will not prescirbe Enbel because they say it will bring the cancer back… so I am receiving no treatment and am in a lot of pain. I am wondering if others have had this happen?
Comment by Rachel on 17 January 2010:
I have psoriatic arthritis I was in so much pain I couldn’t move my hands. I tried other medications before my doctor put me on Enbrel after a few weeks I felt great started going to the gym 5 days a week. Nine months later i was diagnosed with Breast Cancer, no cancer runs in my family and my symptoms only occur it 20% of cancer patients. I was immediately taken off Enbrel and told they would not prescribe it for me again. My cancer was caught early and at 45 I had to have a mastectomy I am doing well now but my arthritis is bad I can’t stand it. I would never go back on Enbrel is does cause the reoccurrence of cancer.
Comment by rdizzy on 17 January 2010:
Linda- you cannot get arthritis in your eyeball.
Comment by Ryan on 17 January 2010:
Susan- Ive had RA for the past year and a half and the anti-biotics did absolutely nothing for me except mess up my stomach badly. Id never reccomend them to anyone for Ra treatment.
Comment by lora on 19 January 2010:
I was diagnosed with Transverse Myelitis July 2008. In six hours time I became paraglegic. I was on Enbrel approx 2-3 yrs…weekly injection. I was not aware that neurological disorder could mean a healthy person could become paraplegic in six hours. I have psoriasis since age 12 and psoriatic arthritis age 29. Over the years my small joints (fingers, toes) have become mutated. Reumatologist suggested Enbrel. Transverse Myelitis is a very rare neurological condition. I have always wondered if anyone else had a similar story. I see that they do. What I have is very similar to MS, only without recurring attacks.
Comment by Brenda on 20 January 2010:
I am 51. I have RA which did not respond to even high doses of methotrexate, so my Rheumatologist put me on Embrel. It worked really well for my RA, but after about a year, I started having infections. I would quit taking Embrel until the infection cleared up, then after a dose of Embrel the infection would come right back or another one would develop. In effect, I wasn’t getting any benefit from the drug at this point. Also, I lost my ability to run a fever when I get an infection, which not only severely inhibits my ability to fight infections, it makes it almost impossible to be diagnosed with one since the first thing health care providers do is take a temp to screen for infection…no temp, no infection. I had a tooth infection that swelled the right side of my face to double its normal size with no fever, and the ER doc was reluctant to diagnose an infection because I had not fever. My PC has seen this enough times to finally believe me, but I have to keep telling other health care providers and they just don’t want to bellieve it.
After Embrel, I went on Humira for a month, but had to stop because I was developing severe allergic reactions to it. Since then I have been on Remicade with just a few minor side effects, but I would rather find a treatment form that does not list other major illnesses and/or death as its possible side effects. Anyone have any suggestions?
Comment by Jennifer on 20 January 2010:
My mom started using Enbrel for Psoriasis then developed Leukemia.
After many rounds of Chemo and months in the hospital, she died on
April 1, 2009. I just know this is related to Enbrel.
Comment by Dave on 22 January 2010:
Diagnosed with psoriasis and psoriatic arthritis. People from work had a hard time dealing with the way my husband looked so we saught help and was prescribed Enbrel. Last may Dave was diagnosed with Hodgkins Lymphoma. 7 grueling months later his Pet and Ct show no sign of disease. probable cause ENBREL. try other stuff first. Dave was able to get over his cancer but others are not so fortunate… Its so bad that a medicine that gave him such relief had to almost kill him…
Comment by Ingrid on 1 February 2010:
47 year old female, started taking ENBREL for my RA when other meds did not work. Started 11/05, by 5/06 I had severe anemia, new onset atrial fibrillation, endometrial hyperplasia (pre-cancer), had hysterectomy in 11/06. Had more heart problems due to the atrial fib. Was scheduled to have ablation and stage 3 NHL was found on the CT scan. Did R-CHOP chemo for 6 rounds. One day after finding out I was in complete remission, my heart gave out due to the chemo drugs. I had cardiogenic shock and was very fortunate to survive. Had to have pacemaker/defib put in. I am SURE all these problems are due to my taking ENBREL for 6 months.
Comment by Matt on 6 February 2010:
My dad (approx 70 years old) was prescribed embrel and took it for approximately 1 year. He developed MRSA about 2 years ago. This past week he was diagnosed with Trigeminal neuralgia (TN). I think we knew that infections could result but no one ever mentioned that MRSA was the most common ! (we had no idea how serious the infections can be). I also believe very strongly & with certainty that the Trigeminal neuralgia is directed related to Embrel. TN is a neurological disorder brought on by the deterioration of the myelin sheath protecting certain nerves. It has been put on record that Embrel can definately cause neurological problems…including deterioration of the sheath protecting the nerves. Certainly it would have been nice if we knew more about this earlier. While it’s been noted that TN is somewhat treatable (we’ll see), it does cause very sharp/electric shock type pain in the face and has also been labled “the suicide disease”. And what about his other nerves ? I hope you do not get it. After reading this page (I believe a lot of the conditions reported on this site/post are probably a result of taking Embrel), I’m shocked that this product has not been taken off the market – could part of this be that the drug companies are supporting our government the way they are? Everyone was begging for this product to come out sooner and now look… I don’t have RA (yet, & I pray that i don’t) and am sympathetic with the sufferers out there as you deserve to have good medicine and treatment, but I feel that good pain relief and going back to traditional medicine is the best way for RA. Keep your potassium levels and spirits up and ask your doctor about alternative medicines. I will continue to read the posts here.
Comment by Traci on 6 February 2010:
I took Enbrel on and off for several years for autoimmune vasculitis. It worked like a miracle at first, but then began wearing off quicker and we had to up both the dose and the frequency. Eventually I stopped taking Enbrel. Eight months later, after being rushed to the ER unconscious, I was finally diagnosed with invasive pulmonary aspergillosis niger, a common black mold fungus in the Southwest U.S.. (I live, however, in an urban area.)
In the ICU, I was kept sedated while the doctors battled my sepsis (multiple organ failure, muscle breakdown etc.) and discovered that the fungus had also spread to my brain. It took nearly a year of taking anti-fungal medicine and regaining strength to get better. Doctors said I had been in “grave” condition.
My recommendations? Before you go on any immunosuppressant, be checked for infections/fungus, get all vaccinations including flu and pneumonia, stop eating raw meats/seafood/eggs, and begin practicing germ avoidance. If you become very ill while on immunosuppressants, your doctor should be suspicious of possible fungal infection and treat with antifungals until the lab results come back.
I have been advised never to take any immunosuppressants, chemo, or prednisone again. Too bad the stronger black box warning by the FDA came one year after I nearly died.
Comment by Anne on 11 February 2010:
Released from hospital yesterday after 10 days of intense anti-biotic and anti-fungal therapy for what was originally suspected to be staph infection. It started in my elbow as bursitis and spread to all tissues throughout body. Infectious desease control team concluded it’s insidiuos and rapid rampage is directly linked to Enbrel. This and other products like it should be removed from the market ASAP!
Comment by DON on 13 February 2010:
taking enbel for 13 years for psoriatc arthritis 3 months ago had a cancer tumor removed from bladder going for a scope test in bladder in 1 week to see if there are anymore tumors if so doctor wants me to have keymo ??????
Comment by Anthony on 15 February 2010:
I was given Remicade and developed throat cancer. Don’t let them give it to you or your loved ones!
Comment by Linda on 17 February 2010:
took enbrel for 5 years, had surgery Dec 11 to remove a tumor on my left lung…..I’m sure it is from taking embrel.My body could not stop the cancer cells from developing.
Comment by Carolyn on 23 February 2010:
After trying every ra drug that came before enbrel, I reluctantly started it. That was January 2005. In summer of 2008, I got a terrible pain in the stomach area and under my left breast. It turned out to be fluid around my left lung, and after numerous tests and biopsies, I was diagnosed with follicular lymphoma. It was a terrible shock to me. I underwent six very agressive chemo treatments, and now have a year left on rituxan treatments. I was one of those people that never smoked, drank or was overweight. My dad died young from smoking cigarettes, so I was always a healthy person until ra. I only took a 25mg. injection of enbrel every other week, that was to cut costs, and I was praying it would be healthier too. That did not work for me, so to everyone out there, please be careful what you take. Sometime pain and suffering may be better!!
Comment by Kay on 19 March 2010:
I was diagnosed with RA in 2009 and my rheumy prescribed Enbrel and wanted to “treat aggressively” to avoid any damage. I took 8 injections and with each subsequent injection, the medicine became less effective. I also developed an internal head tremor. When I researched this medication, I became horrified and angry with my doctor that he did not discuss other treatments. He wanted to try other anti-TNFs, and I refused. Methotrexate gave me mouth ulcers (stomatitis), which told me my body was reacting negatively to this poison. I read the book by Henry Scammel which discusses Dr. Thomas Brown’s research into infectious causes of autoimmune diseases. I am now on Doxycyline 200 mg/day and Naproxen for inflammation. I had to endure the “eye rolling” of my rheumy, but I think he knew I would find another doctor if he didn’t prescribe the antibiotic. Please do your own research. Check out the Roadback.org chat board and ASK QUESTIONS! It’s YOUR body.
Comment by Dianne on 23 March 2010:
When I first took Enbrel in combination with Methrotrexate for psoriatic arthritis symptoms, I believed it to be a miracle cure. The severe swelling and pain I had been living with as a result of my arthritis was finally being cured and I was able to walk and function again. I remember how happy I was. I remained on the medication for years. However, over the past two years, I developed symptoms that my doctors started scratching their heads about: night sweats, deep depression, painful arthritis flare ups out of nowhere that were more severe than anything I’ve had in the past, mood changes, weight loss, memory loss, confusion, bone density loss, etc. I was tested for perimenopause, but the results came back inconclusive. I stopped taking Enbrel completely 6 months ago, and my arthritis symptoms have come back with a vengeance, but the night sweats are decreasing some. I still can’t absorb vitamin D at all and have to be tested for this every three months. The saying “If it’s too good to be true, it probably is.” runs through my mind every single day.
Comment by keith on 24 March 2010:
just wondering if anyone had heart failure issues with enbrel? my very healthly 42yr old wife ended up on heart pumps and a vent after only a few weeks on enbrel. she is coming up on 2 weeks in icu, but doing much better now off enbrel… the doctors did say just today they found i think 38 similar cases of accute cardiac distress from enbrel.
Comment by Bruce on 1 April 2010:
In February of 2009 I was diagnosed with a brain tumor. In March 2009 I found out that it was lymphoma cancer. In September of 2008 I had congestive heart failure. I have been using Enbrel since the beginning and was the first patient in the area to use it. I have had RA since I was 30 years old. I am now 59.
Comment by Scott on 4 April 2010:
Sorry this is a long one, but I have years of info to relate. I’ve had plaque psoriasis for 22 years, starting at age 26 like my father, but my case is much worse than his was, at times covering up to 25% of my skin including the palms, foot soles, face and hands, lower lip and nasal openings. It’s painful under my disfigured nails. I used so much topical cortisone cream that my body became saturated with it, giving bone pain whenever applied after that. I tried methotrexate, increasing the dose to 20 mg with massive body rushes, nausea and hair loss, and 50% symptom relief, so I stopped. I started Raptiva like my dad was taking, but got instantly ill like the flu so stopped. Coal Tar seems to work best but is very messy and stinky, and is becoming harder to get due to increased legislation. My heel was broken in multiple pieces from a car accident, and I decided to take Enbrel before my surgery to be pro-active against psoriasis under my cast and maybe invading the surgery site and getting PA or who knows what. I took the injections for about 6 mos. which reduced my psoriasis about 70% so I stopped, fearing such an extreme drug was worse than the limited relief, and feeling the $1500/mo billing to my HMO was an obscene burden on society. After stopping the shots, the psoriasis exploded all over my body with pimples like measles spots all over, the pimple whiteheads hard like fingernails that would not push out and just get bigger, which I believe is pustular psoriasis. I have to painfully scratch these heads out with my nails and immediately apply the coal tar like crazy to keep them from spreading horribly bad very fast. I also since have facial Melasma, which is dead skin building up around my eyes, cheekbones and mouth, which can only be removed with Azaleic acid daily with only partial success. The psoriasis is now extremely aggressive in my ears and I am losing this battle, with both my ears completely blocked for 4 days about 5 weeks ago and now one is hearing about 20%, the other less than 75%. I KNOW these changes in my Psoriasis are results of Enbrel permanently changing my skin’s physiology for the worse. I have been off Enbrel for 12+ months and these new symptoms continue. Reading the comments on this site I realize there may be much more problems to come. Taking Enbrel was a huge mistake, and I recommend to all: avoid it if they can. By the way, my dad took Raptiva for 5 years and then got diagnosed with bladder cancer and had bladder reconstruction surgery, dying 5 miserable months later in September 2008 with unexplained Hemolytic Anemia and uncontrollable infections at the surgery site. Shortly after his death, Raptiva was taken off the market. The bottom line seems to be that short-term symptom relief with these drugs is a long-term killer. I’m afraid to see what will happen to me next. Honestly, if at some point I get so ill that I believe I am more of a burden than a benefit to my family, I will take myself out. With a continuous family history of 90+ years longevity and no cancer, my dad made it to 70. His mother is still alive and well at 93 with no medications, his brother 75 and strong. I am 48 and slender, no gray hair and virtually no wrinkles, but will be lucky to get another 10 years. I don’t believe researchers are interested in finding cures when they can charge $1500/mo for treatments and bribe lawmakers to legislate away historically proven competitive alternatives like Coal Tar, which a few years ago was required by California to PROVE IT DOESN’T CAUSE CANCER or be banned as hazardous, something that Enbrel could NEVER do. Some years ago a study showed that even coffee caused cancer in lab animals at extreme doses, and they’re not talking about banning it, or tobacco outright either, both with no clear medicinal applications. The sick, sad world of big business…
Comment by Razia on 6 April 2010:
My derm has recommended starting treatment of plaque psoriasis with enbrel – but after reading the blogs on this site…i am not so sure. she also had suggested this new drug stelara but it has only fda approved for 1 year and the long term results are unknown…having psoriasis your immune system is already compromised… so i am seriously having second thoughts.
Comment by Kim on 9 April 2010:
I am 48. I broke out with psoriasis when I was 12 after a strep infection. Went thru years of coal tar tx, my mom putting a solution of oil and alcohol in my hair nightly to loosen the plagues, etc. The only time it went away was during my 2 pregnancies. Then 5 years ago a friend told us about Enbrel. I went to the derm after not going for years due to frustration. She gave me Enbrel. It was a miracle drug. My skin was great. About a year ago I started having some palpitations, shortness of breath, and decreased stamina. Went to the doctor was told it was most likely menopause. I think it is the Enbrel has done something to my heart. I have run 2 marathons, 6 half marathons and would now struggle to finish a 5k. Nothing else has changed. I don’t smoke, I exercise regularly, eat right. I am just sad that when I started the Enbrel- heart failure was not listed as a side effect.
Comment by wendy on 20 April 2010:
I was digagnosed with RA two years ago, about five months ago i was put on enbrel and now i have psoriasis, i have one disease and becasue of a medication that i am told helps with most people( in my case did not help at all) i end up with this skin problem too. I realize it has several side effects but most medication do and doesnt usually really happen. after reading all these comments i almost feel stupid for complaining over something so small but it is just another life changing problem that i do not want. i am so sick of being told this medication will help and it doesnt and causes more harm. i am truly sorry for all the above people it is sad and just wrong that you have all been thru so much more and so much heart ache.
Comment by Vickie on 24 April 2010:
I am 55 years old. About 10 years ago I was diagnosed with Rhuematoid Arthritis. It came on suddenly with a virus. It jumped from paralyzing pain in one wrist one day , then switched to the other one the next day. That day it moved to my feet, my knees , red spots by joints, extreme fatigue and then laryngitis. Took several months to diagnose until I could no longer dress my self. Was then put on usual dose pack, nsaids and then Arava. Shortly after that on Enbrel. With in one week I could get up out of a chair without help, walk normal and almost snap my fingers. After about a year and a half , I had a stroke in my occipital lobe. I lost middle of my peripheral vision on left side permanently. No medical reason they could find. No high bp, no plaque in arteries , nothing. Rhuemy, Internist and Neurologist say 99.9 percent sure was Enbrel. No proof, but we know it was that drug.
Comment by Tracey on 25 April 2010:
I am almost 53 years old. I have been on embrel for about 5 years now.I have Rheumatoid arthritis. I seemed to be doing quite well firstly on the embrel, but in 2007, i had to have an ankle replacement due to my mobility was so bad, i felt so wellfor a while, Then started back on embrel again, and I am just going downhill, I am having to have a carer now, i cant do cooking, very difficult to wash myself as my joints are so badly inflamed. I now have been told i need a right elbow replacement, and then a left one to follow, also my right knee needs one also. I forget to mention i have lost so much hair. I have just got a hair piece. I feel what has this Embrel done to me. I used to be so happy love life and get out and about but now i hardly venture anywhere. I had had methatrexate but was so ill, i am now on Arava to go with the embrel. I am so concerned about these side effects. I went on embrel because i was told it slows down the deformity of the joints how can this be when i am having more replacements. I must state also i was diagnosed with this disease at age 40, in my eyes, so therfore it can be in the eyes, i saw a comment before someone said impossible but i can confirm that was how i was diagnosed.With strogens disease also dryeyes and mouth. I am not sure about Embrel, I just want to stop it completely.Ijjust want my life back and stop this fatigue and tirdness.
Comment by beth on 2 May 2010:
I am a 42 year old female completly healthy until diagnosised w/ RA at the end of Feb 2010. My Dr. put me on enbrel. The first shot went well. I felt great. The second shot I started to feel out of breath and my heart rate was very fast. Within 3 days of my second shot i was in the hospital w/ heart failure and had open heart surgeryand was put on a right and left heart pump. I am lucky to have been at a hospital that could do the surgery that I need. I am home now and recovering. It is believed that my heart failure was due to the enbrel. Has this happened to anyonr else?
Comment by Tiffany on 5 May 2010:
Im supposed to start embrel tomorow and Im scared so bad, Im 27 and have Psoriatic Arthritis. I dont want to die but I want to be there for my kids too. I cant do anything very fun. :/
Comment by Debbie on 6 May 2010:
My brother-in law was on EMBREl for about two years to treat his Psorriasis. He started having severe back pain and was diagnosed with osteomyletis of his spine,which is a bone infection. Due to the infection he had about seven spinal surgeries within six weeks. He became quadriplegic and had to have a colostomy, bone from a donor put in his neck and a filter of some sort for blood clots. He also had to have a feeding tube put in. I can barely stand to tell this story we are all devistated. My brother- in-law had to go to a nursing home, and by this time he developed three pressure sores and many surgeries to clean them up. He would go back and forth to the hospital for MRSA, and complications from that. finally by month seven he was sent to hospice with a blood clot and sepsis. We lost him three days later. My sister is a 55 year old widow strugling to just keep a roof on her head, not to mention, his grand children are suffering his loss. He passed away February 2010. Please be carful with the choices that you make on your healthcare.
Comment by Rachel on 15 May 2010:
Ever since my husband has been injecting Enbrel, I have felt ill. He and I are, of course, sexually active, and I’m wondering if I am getting the side effects from his bodily fluids? I’m frightened and feeling worse all the time. Has anyone else had this happen to them?
Comment by Sandra on 19 May 2010:
My husband has been on Enbrel for ten years and was dizzy and sick almost every day. It really helped his RA but now he has developed lewy body dementia and I believe this drug Enbrel caused it.
Comment by paul on 27 May 2010:
hi i have been on enbrel from the start i was there guinea pig,i have severe JRA and iam now 32 at the start of taking enbrel it was a wonder drug it was great to get rid of my constant pain i was depressed,but after taking it for 10 years i think the drug is slowly wearing off as my pain is coming back in bouts,one day iam fine the other i cant get out of bed,i had to have steriod injection because my pain was so severe but how long is that going to last i dont know can anyone help?
Comment by evelyn on 28 May 2010:
i was diagnoised with ra and oa (arthritis) and through the years i was on every type o antinflamatory going. when embrel came out in 1999-2000 my dr put me on embrel. i found it worked wonderul on my arthritis but ound that my immune system was not working well. first let me say i worked in a hospital setting and no mater how much i washed my hands and took other preautions i kept getting infections ater infections the most inections that i had at one time was 18 and was hospitalized a total o 19 times or treatment. one time when i was so sick at home and elt like i was going to die, i drove to the emergency room. in my persistance the dr in the hsp called my personal dr and he decided tp do a blood culture. in 3 days my dr called me up frantic for i was sepic. every time i had trouble with these infections i was out o work or months at a time and was able to bounce back to go back to work. 4 years ago i got the infections going on a rampage again but this time was not able to bouce back. i am not able to go back to work and now trying to get social security disability i am 55 yrs old and my life as i know it is over thanks to embrel…..is there a class action law suit against embrel? i would be included
Comment by Tiffni on 6 June 2010:
First off let me start by saying that I am so incredibly sorry for everyone’s loss, whether it’s the loss of a loved one or loss of your health as you once knew it. I was diagnosed with RA in 2005. Unfortunately the meds my doctor had me on simply weren’t working for me. They couldn’t understand why my RA was so aggressive. Who know’s, right? I was in the military so I’m almost positive it was the stess of being a soldier. Needless to say, I was put on Enbrel in 2008 (I think) Immediately after I was given my first injeciton I experience lower back pain that was absolutely worst than giving BIRTH! I didn’t really begin to connect the two because my RA was controlled immediately after my first injection. After about two years of going to an accupuncturist, physical therapist and a chiropractor there was still absolutely no gain in the race for relief. I have found that I suffer from a bulging L5 S1 discs. Crap! Right? I know. So I then developed Sciatica. UNBELIEVABLE! So now the doctors want to perform emergency surgery within the next 5 days because not only do I have Sciatica, I also have a dropped foot. So now I’m tripping over everything in sight. With that being said, I went home and bought an inversion table. That helped me tremendously with my sciatica. Within about 5-10 mins of hanging upside down the sciatica was complete alleviated. My scheduled surgeon did not believe me and I was asked to come back to the hospital so that they could check my sciatica and dropped foot, and to their surprise it was completely gone. Seriously! OK, so back to the lower back pain. I noticed I only had pain when I took my Enbrel. The doctors told me that in their opinion, it didn’t make any sense. So I called the makers of Enbrel and asked if they had any complaints of low back pain and of course the answer was no. However, I am the one taking the medicine and know how my body responds to it. Since being diagnosed with RA I have learned to listen to my body. I am no longer taking Enbrel and guess what NO BACK PAIN! For those of you who are dealing with chronic inflammation, I am now taking Rheuma Shield for my RA and it works beautifully. ( I got mine from my accupuncturist office, but I’m sure you can order it on line) I take one at night so that in the morning I’m not experiencing any pain. I have completely cut out all red meat and pork and I make sure I take my vitamins( One A Day For Women, Omega 3 and Absolute Amino Acids(with Vit C and Vit B6)) I tell you, Being Diagnosed with RA may have been a blessing for me as I have become very health conscience as a result. God Bless! Remember knowledge is power and it’s inhumane to keep it to yourself. I pray that we all learn to rely on our own conscience and if it doesn’t feel RIGHT then somethings WRONG!
Comment by Kathy on 22 June 2010:
Like April, I have had VERY low levels of Vitamin D. I took Enbrel for about 8 years? I think. I have been off of it for 2+ yrs. I think that I am having neurological problems now. I have A.S. I have been disabled for 2+ years. When I quit Enbrel, I was Soooo sick. Bed ridden for 2 months, then mostly bed ridden for 2 more months. I have been very ill. EXTREME fatigue, exhaustion.
Comment by Joseph on 5 July 2010:
I was on and off Enbrel for the last 5 years. I was given it to treat Psoriasis. I never had RA or was diagnosed with RA. About 12 months ago I started to experience extreme pain in my lower joints and in ankles. I am in so severe pain currently I can hardly walk and limp like I am 70 years old (I am 45). I am in so much pain I can’t take it anymore.
I lost my insurance about 10 months when my insurance (Blue Cross Blue Shield) went from 600 per month (for just my wife and I) to over 1000 per month. I don’t know where to turn.
Comment by Kay on 12 July 2010:
I am a 53 year old female have been taking enbrel for over 6 years i have been suffering with horrible muscle pain that i was told is Fibromylgia i have devolped a rash to almost every antibiotic on the market and the last few days I have been so tired I can’t get out of bed and my throat feels like strep throat but what can I do can’t take any meds for it. I am going to a allergist tommorrow hopefully he will find a antibiotc that i will be able to take I am so scared I know my immune system is shot and i will never make it to live to be very old if anyone can offer some advice I would appreciate it.
Comment by Phillis on 15 July 2010:
One of the side effects of Enbrel in rare cases is serious nervous disorders and/or seizures. I was diagnosed with RA in 1986 at the age of 28. I am now 52. I have been on various kinds of drugs for the RA over the years. I have also been on Remicade, Humira and Enbrel. After only being on Enbrel for 1 week in 2004, I ended up in the hospital 4 days suffering from what they call partial seizures. I had never had seizures before in my whole life. I now have to be on Dilantin daily as a result. There are times I still have a seizure even on my Dilantin. I also developed a bacterial infection in my lungs. My health has went way down hill ever since. Before a seizure comes on my head hurts, vision goes blurry, I have shortness of breath, numbness, tingling and burning sensation in my arms. Then I feel like someone has sat on my chest. Then comes the involuntary muscle control of limbs. I don’t always remember all of this. Of course they didn’t have me continue with the embrel. Now I’m having the lower back pain and disk starting to buldge. I only take today for the RA Methotrexate and Mobic. I’m scared to take anything else. Has anyone or someone you know had this happen to them as a result of ENBREL? If not, there should be a class act lawsuit. I also reported this to the FDA.
Comment by michael on 20 July 2010:
i was diagnosed at an early age after seeing at least 8 dr,s that i had ankylosing spondylitis ,psoriatic arthritis, been taking enbrel since it first got approval. having a high pain tolerance out of necessity . lately i noticed intense itching on my lower legs hands and forearms then bleeding with an orange like substance at an attempt to heal.then i noticed my hair is falling out at an alarming rate,im 55 and always full hair also hair on my legs started falling out. now ihave had a nasal-sinus infection i cannot get rid of pieces of my throat yellow in color can be scraped off literally with a sterile instrument can barely swallow
Comment by Thomas on 30 July 2010:
I took Enbrel for almost 2 years for mild psoriasis before i became very sick. I was out from college for a year and half withdrawing from enbrel. when i finally got off enbrel, my psoriasis was 10 times worse and all my joints were swollen and I was blacking out some days from the nausea and fatigue.my mother witnessed me blacking out one day and said it look like i had a seizure or a heat stroke. It felt as if someone was pulling razer blades over my body for months. My skin was paper thin and would tear from the slightest resistance. I became allergic to gluten and all Genetically modified foods and processed foods. For several months before and after stopped taking enbrel i was battling cysts, hives and other infections and rashes on top of the now pissed off case of” head to toe” psoriasis. I suffered from vomiting and bleeding as well. I could write more, but i’m afraid it would gross you out. over a year later, my stomach is still inflamed but i am recovering well. I lost 40 pounds over this year and now weigh 125lbs. I think overall I dodged a bullet and was lucky. I barely remember coming off this drug in May 09, there are a few months around that time that are blurred memories. I’m almost positive that enbrel messed up my memory for a few months around the time i was really sick. Im so sorry to hear about the people that died from this horrible drug. My heart goes out to you all. My hope is that people will read this and spread the word about Enbrel. I hope it saves at least 1 more person from using this drug.
Comment by Patricia on 4 August 2010:
I feel bad about writing in on one hand because I am not in as bad shape as some of you are and yet I know how hard it has been dealing with my situation; so I know some of you have it so much worse. But this has helped me see that there is a problem with these drugs and it is definitely not just me. I also hope that by all of us sharing our experience that other people might have a little more information to make decisions about the medicines that they take. And even if you are not having trouble with enbrel or the other similar drugs at this time, be sure to go off of enbrel if you get an infection – also ask your doctor to check to see if your immune system is low. I am now 60 years old and I took enbrel for 5 years without any problems. I started taking enbrel for psoriasis in 2003. It was really bad in my scalp, on my legs, and beginning to be on my arms and torso. When I started taking it in 2003 they did not warn me – maybe they did not know yet – about the infection risks. It cleared the psoriasis up in my scalp and mostly on the rest of my body, but not on my legs – which I could live with. But in 2008 I got a sinus infection and it just would not go away. It caused a horrible coughing. My GP knew I was taking the enbrel but I guess he did not realize that it caused those problems. And I did not have an appointment with the Dermatologist until later in the year. After several months of antibiotics and not getting any better, my GP sent me to an ENT, pulmonologist, and allergy/asthma doctors; After about 8 months one suggested that I stop taking the enbrel. I then had a sinus surgery; more antibiotics and the cough and sinus infection would not go away. A year ago they finally did a culture of the sinuses and found that I had a staff infection (not mersa). More antibiotics, another sinus surgery and I still had the staff infection in my sinuses. About 9 months ago they found that my immune system was low and that was one reason that it would not get better, so I am now on an infusion of vivaglobin – blood plasma with antigens to build up my immune system. I give it to myself 2 times a week – it takes about 2 hours each time. I still have an infection; my cough is better – still there because of the drainage. I am now starting on a nebulizer for the sinuses that I will do 3 times a day – 5 minutes each- for 3 weeks. It has 3 meds that you put in it that will go directly into the sinus area. One is for the staff infection and one is for a pseudomonas aeruginosa infection and a steroid for the swelling. This sounds very promising since the antibiotics go right to the sinuses. So I have been dealing with this for 2 years and it is still on going. I don’t know how much enbrel had to do with my problems with sinus infections and coughing – but I do feel like there is a correlation, especially after reading some of your remarks.
Comment by Bea on 27 August 2010:
I\’ve been taking enbrel since 2003. Before enbrel, I was in severe pain, could not walk or use my hands. Yes there are side effects, but who wants to live in a wheelchair? Who wants to cry everytime someone touches you or you need to get washed or dressed? Anytime you take any medicine it can cause trouble, but in the case of RA, you have NO CHOICE. Right now the enbrel has stopped working for me. I hope my RA doctor steps me up to Humira, yes even with all the possible problems it can cause. I don\’t want to live this way,in constant pain. Frankly, it\’s not living. I live with my son or I would not be able to live alone. He would never sue the drug companies for something I agreed to take. He knows it is the drugs, with or without side effects, that have given me some kind of a life and has reduced the pain to a level I can live with. You all need to stop complaining and face the facts…without these new drugs many of us would have no life at all. Cancer is a risk with lots of over the counter drugs…so may I suggest you take nothing…and end up in a nursing home…it\’s your choice…take responsibility for it. No one gave you RA, so it\’s up to you..grow up people.
Comment by rjl on 31 August 2010:
Does anyone have information on Enbrel and kidney cancer?