Savella Recall Urged by Public Citizen Due to Heart and Suicide Side Effects

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The prominent consumer group Public Citizen has petitioned the FDA to initiate a recall for Savella, saying that the fibromyalgia drug’s heart and suicide risks outweigh its benefits.

The Savella recall petition was sent to the agency on January 20, calling for the drug’s immediate removal from the market. Public Citizen claims that the benefits of the drug are highly questionable, and note that side effects of Savella could increase the risk of hypertension, heart problems and has been linked to suicidal tendencies.

Savella (milnacipran) is produced by Cypress Bioscience, Inc. and Forest Laboratories, Inc. It is a selective serotonin and norepinephrine reuptake inhibitor (SNRI) and is similar to many antidepressants currently on the market. The drug is contraindicated for people taking monoamine oxidase inhibitors (MAOIs) and those who have uncontrolled narrow-angle glaucoma.

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It was approved by the FDA for treatment of fibromyalgia in adults on January 14, 2009. While the drug is used as an antidepressant in Europe, the European Medicines Agency (EMEA) refused to approve Savella for fibromyalgia treatment in July 2009, saying that the drug had marginal benefits that failed to outweigh the health risks from Savella side effects.

Fibromyalgia, or fibromyalgia syndrome, is a condition that manifests as widespread chronic pain and is estimated to affect between 2-4% of the population. However, much of the medical community disputes how to diagnose the syndrome, and many do not believe it is an actual disease because of a lack of objective diagnostic tests and physical abnormalities on examination. While some say it may be a neurological condition, possibly brought on by stress and resulting in oversensitive pain receptors, others say it may be a “non-disease.”

According to Public Citizen, two randomized clinical trials with Savella found that the drug increased blood pressure, heart rate and suicidal thoughts. Nearly 20 percent of the trial’s participants who were given Savella developed hypertension, compared to 7.2 percent who were given a placebo. Public Citizen said that FDA’s own reviewers determined that Savella could increase the risk of heart problems, such as strokes, heart attacks and sudden death, by as much as 50 percent.

The group claims that studies have shown Savella increases the risk of seizures, addiction, excessive bleeding, mood disorders, fractures, glaucoma, nausea and vomiting. They also indicate that the drug can put fetuses, newborns and nursing infants at risk when used by pregnant mothers, and can cause reproductive problems in men.

In addition, Public Citizen says that there is evidence that the drug does not work. Public Citizen claims the director of FDA’s Division of Anesthesia, Analgesia and Rheumatology Products has said that Savella did not relieve pain, the main symptom of fibromyalgia, in clinical trials.

“Fibromyalgia is a chronic disease, but neither of the drug’s trials showed any statistical effectiveness beyond three months,” Public Citizen said in a press release. “And even within the trials’ three-month duration, more than 90 percent of users in the trial received no benefit from the drug at all.”

Tags: Fibromyalgia Drug, Savella
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337 Comments

Kathy
I am so very glad I found this web site and believe that the Lord himself had me click on this particular site! I went for a new patient visit with a woman PCP today as the one I had moved away and I miss her so much! Any way once this doctor found out I had Fibromyalgia she suggested this drug Savella and never even spoke of a side effect! I have tried Lyrica and Neurotin. The Lyrica caused me to have anxiety attacks that made me have to take another medication to counter that and then it wound up causing me to get Hypotension with my blood pressure dropping to the bottom number of 40! I almost passed completely out! I went to the doctor and she had them take my blood pressure in a lying down state then sitting up and then standing up. Your blood pressure is suppose to regulate itself when you do these things and mine didn’t change at all stayed low so she said she did not think it was a good medicine for me and took me off of it. I just had another doctor try me on Neurotin which I was leary of to start with but I said okay and it gave me Vertigo so bad I couldn’t get out of bed without throwing up and could not eat! There was a point where I even felt detached from myself like I was in there looking out! After I called the doctors office and they told me to quit taking it I could literaly feel my brain waking up on the left side of my head and forehead! I am very sensitive to a lot of drugs and have side effects that are normally only in the rare category so after reading all of these post there is no way you could even pay me money to take Savella! I had a double spinal fusion with complications in 1998 which I believe caused this Fibromyalgia. I was just changed over from Lortab to Oxycodone but just the 5 mg pill and it has given me more relief than any other pain reliever. I would just rather take pain pills, muscle relaxer and Ambien CR and deal with it the best I can because at least these drugs I’m taking (Oxycodone, Flexeril and Ambien CR) have been around a while and tested! I’m not quite sure why it is doctors want so badly to change you from pain meds to some mind or brain altering drug that can cause much worse damage to you then the pain meds!!!!!! I saw a post above that mentioned getting neurapathy in the feet from Lyrica and I am now wondering if that is why my feet hurt so bad sometimes and tingle like all the feeling isn’t there. I took Lyrica only at bedtime at 150mg for like a year before my pcp upped the dosage to 300mg for the Fibro and that is when the problems started well problems more than weight gain. It made me gain 10 lbs and I hated that. Thanks so much to all of you for sharing this information! I am now wondering if I should even continue to see this doctor after she suggested this medication to me! Doctors listen and believe these drug reps to much! Then need to study it themselves before prescribing it to patients! Like someone else commented above we are not guinea pigs!!!!!! God bless you all and I hope all of you are able to get back to normal!
Donna
Just got the starter pak from my doctor yesterday. After reading everything here, and only taking the first two pills, I think I’m going to throw the rest away. My pain is usually about 3-4/10. That doesn’t seem so bad afger reading all your comments. Thanks to all who posted here.
Jerilyn
I started taking Savella a little over two months ago now. I was dx’d with fibromyalgia and had been on pain meds, doing craniosacral and myofasial therapy for about 6 weeks prior to being dx’d. I was amazed at how quickly the medication worked and I was able to do things that for years caused such severe pain, I felt older than the 41 yr old that I am. I was also prescribed Abilify for sleeping issues at the same time as Savella. I read the insert over and over after talking with some friends about Cymbalta and Lyrica and their experiences. The insert didn’t make side effects sound horrible so I wasn’t apprehensive to start Savella. It started with profuse sweating….with no strenuous exertion. I tolerated this because I felt so good….then the flushing and elevated pulse started…..it wasn’t until just this last week that I woke up with a headache that hurt so bad I thought my head was going to pop off…..at a resting point at work my BP was 160/110. Higher than it has ever been and I noticed that my vision was blurred. I became short of breath and started experiencing chest pressure. Scared, I went to my fam doc and his office staff said Savella didn’t have blood pressure side effects, hmmmmm??? Doc recommended cutting the dosage in 1/2 immediately and ordered a stress echochardiogram. Heart rate was elevated and I just couldn’t get my breath!! Day three of symptoms were worse…went to see a cardiologist on my own logic. He had never heard of Savella, but after discussing my situation, he recommended completely getting off Savella. I am now scheduled for an echocardiogram Monday and thallium stress on Tues/Wed to see if I have any damage. I am on day 5 of weaning off and I already feel the difference in my pain level returning, which is disheartening. But compared to the alternative, I would rather deal with the pain than the possibility of a heart attack and not being here for my 5 yr old daughter and 17 yr old son. Another side effect is daily “spotting”. My always regular monthly periods turned into daily bleeding and the bleeding during the regular period time was heavier than I ever experienced. Please consider all side effects of this before starting. I am hoping the people who haven’t experienced side effects……..don’t.
Nancy
Oh my. I will have to do this later, but I can say that all of the commits above sounded like I wrote them. Had a EKG today, because I thought I was dying. Had them before because of surgeries (precaution) and was fine. Pulse 200 now. Thanks all of you.
Patty
To KathyMc – I wanted to address your question about having side effects linger after stopping Savella. I was on Savella for 14 days when my BP soared to 190/150. I thought I was having a stroke! I was taken to the hospital and was immediately told to stop taking the medication as it appeared to trigger an episode of “serotonin syndrome”. So I stopped (which made me feel horrible for 2-3 days…weak, nauseous, twitchy muscles, etc.) but by day three I was feeling better. HOWEVER, six weeks after stopping Savella, I had another incident with a racing heart rate, felt like I was going to pass out, etc. It lasted for over an hour, but finally normalized. That was two years ago this month and I haven’t had a reocurrence since then. Perhaps my body still had some remnants of the SSRI and it had to rid itself of the after-effects. I just hope for those of us who have had this type of reaction that we didn’t do any permanent damage to our heart muscles, etc. Please be well!
Cate
Lyrica induced neuropathy in my feet, even though it suppose to help with nerve pain. It did help the nerve pain from my back stenosis but it made my feet hurt so badly, I could barely walk. At first I thought it was a miracle drug, it helped the pain, made me have more energy and better sleep, but that was all temporary. My PM Dr. just gave me the starter pack for Sevella and says his patients have had great success with it. He said nausea is the biggest problem, which I already have. I also already have high blood pressure so why would I take this and risk all those problems ON TOP of all my other issues. I thought it wouldn’t hurt to try it but dank, if problems can last far after taking it, no thanks. This just sucks, I was really hoping for some relief. Also EVERYONE GET THEIR VIT. D CHECKED, MADE A BIG DIFFERENCE IN PAIN LEVELS AND MUSCLE CRAMPING!
Sandie
Wow, I have a rheumatologist appt tomorrow and thought I would read about Savella which my PCP gave me a stareter pack of several weeks ago during a visit when I said the Lyrica was making me gain weight. After reading all these comments I would be a fool to even bring up the name tomorrow. As many medical problems as I have and as many medicines I take I don’t need any more. Lyrica is helping my fibromyalgia (not my chronic back pain) and I have low blood pressure and a good 76 resting pulse. I have never had headaches or susidal thoughts so until something better comes along I guess I will just have to be a fatty and gain weight on the Lyrica. Good luck to everyone and if were you I would seriously listen to what Public Citizen is trying to tell you all. The FDA doesn’t have a crystal ball and they have approved many other drugs which have horrible side effects so users of Savella beware.
Sue
I have been taking Savella for a month and a half now for fibro pain. I have had fibro for at least 10 years. My pain was gone after the first week on Savella. It was wonderful. I started with the Tritation pack and then took 50 mg. twice a day.I decided the 50mg was the reason I was feeling nausea so I decided to break the 50s in half and take 25mg twice per day which still relieved my pain. After one week on the pills I had slight bleeding every single day but since I am 52 thought it might be the “change”. Now after a month and a half on these, that slight bleeding has turned into very,very heavy bleeding. It’s been 11 days now. My Doc says it’s not a side effect. I also have a fast pulse (105 per minute) which I NEVER had before as a matter of fact it has always been rather slow. Doc says he is not concerned about the 105. I also wake up to my heart racing in the night which is scary. I have a jittery feeling inside like I drank a pot of coffe or something – don’t know what that’s all about. I will have my BP checked and call my gyno. I wonder if anyone else has had this bleeding happen as a side effect?? One of the side effects does state bleeding, but it doesn’t say bleeding where or how?? I am considering stopping these pills even though my pain has stopped. Not sure what to do at this point. I wish my Doc would discuss this further and help me decide-I feel as though I have been left to figure this out for myself.
Diane
The day that i wrote the above letter, I ended up in the er with fibulation so bad that they had to stop my heart and restart it with meds to try to get it to come back to a normal sinus rhythm. I was in fib for forty five minutes with the ambulance, and I did not time it at home. I have to call cardio monday when they open and get in. Meds they gave me have stopped it from fibbing and sticking while in fib. but, it is constatntly racing on and off. Im scared its not going to stop this. Why would they put this out on the market when it does this to people. And I trusted a doctor and took it even though I did not like they side effects i saw in the brochure. I hope that if I die, my son will benifit from this letter if it goes to court. He is going to be ten in a few days, and I am a single parent. This is so not fair, t obe this sick now at age 47 … Thanks FDA, and thanks makers of Savella
Sigrid
At first I experienced great results with Savella, esp. regarding sleep and the clearing up of the accompanying brain fog. However, my blood pressure (normally low) shot skyward, as well as my pulse. I lost weight and could go and go and go, but the overall physical price was too high and the drug actually seemed to INCREASE my overall discomfort, including causing new pain, stiffness and weakness in my hands. Additionally, I’d bruise and bleed like crazy from even the slightest cuts or bumps. Bloodwork showed elevated liver enzymes and increased inflammatory and degenerative muscle enzymes as well. A rheumatologist actually recommended starting blood pressure medication when I stated my concern about the blood pressure issue and I thought he was nuts–why take one pill just to try to mitigate the ill effects of another? No way. It’s too new, too little tested and didn’t help me enough. I’m currently titrating onto Straterra (another SNRI) in the hope that it will continue the positive effects without causing the lasting major damage to all major body systems that Savella can/will do. Since stopping Savella two weeks ago, I’m feeling better already.
Deborah
I tried Savella for a week and developed serotonin syndrome. Nausea, heart flutters, extreme depression, terrible headaches, edema, thought processes were totally disrupted. Horrible drug for me. Could not talk without crying. Pain did seem to be lessened but could be result of what I call “brain electrical shorts” or what happens when ones electricity is blinking off and on. Felt like my eyes were twirling around in my head. Terrible experience and pray that the damage is not permanent.
suenette
I have a 2 week trial pack and a prescription for Savella. I am scared to try it now after reading these posts. This is the third doctor to tell me I have fibro… during which time I had Lyme disease the whole time. I now have Post Lyme Syndrome and Fibromyalgia – you think little is known about Fibromyalgia – there’s even less known about what to do with someone once they’ve finished the CDC proscribed treatment of antibiotics and still present symptoms. If I don’t try this will the doctor continue to treat me? If not, then what do I do? I have to go back to work soon. I was injured at work and had double back surgery. I don’t see how I can – I can’t remember anything since the Lyme hit me. I forgot to tell my family at a gathering that my son is being deployed to Iraq – just two days after I talked to him. Now with the constant pain being able t write and test programs seems absolutely daunting.
Diane
I started taking Savella because my Neuro said it might help my Fibro pain. I can say that at first I had some great relief. I was up and out of bed, out at the pool and just having great relief. Then and this is just like day five, I woke up in the middle of the night with my heart racing crazy crazy… I shook it off and went back to sleep and again it happened that night about four different times. It was on the first night of my 50 or what ever the white pill is in the full does of the tirtrate pack. I cut it back to the half thinking the dose was to high, and my doctor agreed. But I still kept waking up like that at night so , I stopped it. It really helped me feel much better, so I was sad. Now each day after i have stopped, I keep getting rapid odd heart beats. like 1.2. 345. Its happening now as I type, I fear its gonna kill me. Im gonna see my doctor tomorrow. This beat takes my breath away, does not hurt but i feel like im not getting my air right. afraid Im gonna go to sleep and not wake up.. It happens during the day too, not just at night. This has not happend before, but since Savella. I was afraid to try it, cus I read the side effects. Told my doctor that it sounded crazy to try, but he said it was really good, and that those side effects were so rare. Now my heart, my most important organ is messing up, and could kill me so I read above in t his message board. I tried to help my pain, and now im worse off. I trust these companies not to pass mediciations that are going to kill us, unless they are trying to thin out the crowd?? I want answers and I do not want to die from taking a pill for a week.
Veronica
Please be careful. I am happy that Savella has helped so many people. However, after taking Savella for a short period of time and experiencing agression issues, I am not sure it is safe for anyone. It definitely is not safe for me. My breaking point was when I was at my workplace standing in the elevator with people standing in front of me. I was fixated on their heads and wanting to bash them in. My adrenalin was rushing. I wanted to hurt someone. So totally opposite of me. I am a softy. I experienced shortness of breath. This really scared me. I was also thinking about death constantly. No acts of violence in my past and no priors. I started looking at the things that had changed with me recently. I looked at info on the internet. I called my doctor’s office and told them I was not taking it anymore. The person who answered the phone took the message and that was that. I am so sorry to hear about the young person who was jailed maybe b/c of Savella. I hear their cry it is real.
Sandra L.
Immediately after starting savella, I noticed an odd headache that just wouldn’t go away. I was persistent in taking the medicine because I was hoping that this side effect would eventually go away and that this drug would be my savior. Approximately 4 days into taking savella, I noticed that I wasn’t feeling well “overall”…………fatigue, nightsweats, nervousness, etc. On the 6th day, I was feeling very weak, so I decided to take my blood pressure. It was extremely high 150/100, so I decided to monitor it since this is one of the “known” side effects”. The next few days my BP continued to be high and my pulse also started to race. I decided to document this information for my rheumatologist for a call on Monday morning, since it was now the weekend. On Sunday night, I awoke to pain and tingling in my left arm and shoulder, as well as extremely bad “acid reflux” and coughing. I was scared and decided first thing in the morning, I was calling the doc and probably not continuing with this medicine. On Monday morning the numbness and tingling were now pain and my bp and pulse continued to be high. I was told to get to the ER, where I was immediately taken in and hooked up to cardiac monitors. I was admitted to the cardiac unit for “observation” overnight since my pulse and BP were not stable. The next morning, they did an echocardiogram which showed a problem with my left heart ventricle called Impaired Left Ventricle Relaxation which means that ventricle was not filling up with blood as it should be. I have been off this medication for approximately one week now. I still don’t feel “normal” and am awaiting the results of a stress echo-cardiogram which was done a few days ago. I believe it was this medication that has caused this issue for me. I still have shortness of breath, fatigue, muscle aches, pulse all over the place depending on what I am doing and a multitude of other symptoms. I just hope I get back to feeling well again soon.
Sue
I also had posted my experience with this drug on May 29. Had an ekg, stress, and echo heart test done. The stress was fine, however, just received results of echo today and I have a diastolic dysfunction, and a thickening of the left ventricle wall. I truly believe that the dysfunction is due to taking savella for a month. I had no other problems other then the fibro and arthritis before the savella. I really thought I was dying with the high blood pressure, which now I’m on a med for, and the racing heart beat. This is a dangerous drug and should be recalled. I will be sure to alert the FDA.
Kathy Mc
I posted my experience with severe side effects earlier (May 17th) on this site, please take a look at my previous comments. I hope everyone that has posted side effects on this site has reported them to the FDA, if they aren’t reported they have no record that they have occurred to some consumers. To date, I am currently wearing a heart monitor for 30 days due to high heart rate incidents. It will be 1 year ago on July 2 that I had my first incident and discontinued the drug after using only four days at the lowest dosage. Since my side effects have continued months after discontinuing the drug I am interested in knowing if others have experienced side effects after discontinuing the drug or am I the only one? Also, have any of you experienced difficulty with heat and cold tempatures effecting your side effects, as well as fatigue, lifting heavy objects and emotional or stressful events triggering your side effects or problems? I wonder if the FDA has began looking into the petition that the Public Citizen’s submitted??
Cindy
I was given a two week titration pack of Savella by my pain mtg. doctor on 06/25/2010. I asked my doctor what are the side effects he told “nausea is the most common one” and for me to call his office and let him know if it get to be too bad. I was given no other information, no “Prescribing Information or Patient Information the only thing with the pack was “Fibromyalgia an introduction for patients” & “Medication Guide Antidepressants Medicines, Depression and other serious Mental Illnesses, Suicidal Thoughts or Actions”. I have Chronic Pain right knee and thigh after a slip & fall injure that took place at work in 2002 W.M.C.. I have only taken one 12.5 mg pill of Savella, I have a headache that will not stop, serve lower abdomal pain (cramps) along with gas, constipation, dizziness and flushing of my face and neck. after reading all of the comments, I don’t know if I want to take Savella I do not think it is worth my life I will keep living with the pain at least I am alive. Savella put the ll’s behine the a & space the word out(save all to injure all or kill all). I am on day three &I don’t feel and better I feel the same if I don’t hear back from the doctor I will most likely stop.
Cindy
I was put on Savella two week titration pack by my pain mgt. doctor. After only taken one 12.5 mg pillI I have the following nausea, lower abdomen serve pain, gas, constapation, headache, dizziness. I am on day 3 I don’t feel any better if I don’t hear back from the doctor I will most likely stop Savella. I have Chronic Pain in my right knee & thigh from a slip & fall injure that took place at work in 2002 W.M.C.. I asked my doctor what are the side affects? He told me “the most common one is nausea ” he said for me to call his office if it got to be too bad, no return call at this time. I was not given any Prescribing or Patient information, a Medication Guide Antidepressant Medicines, Depression and other serious Mental Illnesses, & Suicidal Thoughts or Actions & Fibromyalgia an introduction for patients.” If I had been given the prescribing-patient information & been able to read it I would of been informed about the risk v/s the benfits. As I am in the medical field at lease I was, very hard with the pain and other symptoms that I have.to work. After reading all the comments I don’t think I want to finish taking Savella, it is not worth the risk to my life I will live with the pain at least I am alive. Save all to injure all or kill all. Save part & change the a & ll ‘ s around to spell out all, save all the word’s are is in Savella. God be with all of you. At lease I am not alone. Praying for all of you that are in pain. I pray that other’s will be more informed about this medicine the risk and that doctors will tell if not give them the information I only wish that I had it to read no I have to go to a web site and find out.
Lyn
I have been on antidepressants for about 15 years and I was tired of feeling fatiuge. My primary doctor recommended Savella in July 2009 becasue a few of her patients said it helped them not feel so tired. I was given two sample packets and by feeling very angry, and aggitatied over little things. My co-workers noticed that I was very crankly but I was not tired, and not sleeping well at night. After the sample package I started taking the recommended dose. I started getting worse and thoughts of suicide. Into the thrid week After the thrid week I put a belt around my neck and tried to committ suicide and my husband has to pin me down to the bed so I wouldn’t. It upset my husband and kids so bad that they took me to the doctors the next day. I stopped taking Savella and made an appointment with a physcharist. They told me that it was the Savella that caused my attempt at suicide. I know that some drugs work miracles but this drug is very dangerous if you suffer from depression.
sharon
My rheumatologist had me try Savella for Fibromyalgia. She told me take it slow and watch my blood pressure. I have very low blood pressure normally and this drug really messed me up from the get go. I was only on it for 5 days. Blood pressure shot up, pulse rate off the charts and so weak I could barely function. Headaches, dizziness, night sweats, eyes burning, neck and shoulder pain, uncontrollable shaking . Irritable, angry, crying jags and an overwhelming sense of fear because my heart was racing like something was scaring me to death. I’ve been off Savella for weeks and I feel like I am inside a strange body. Nothing feels right and I am wondering if things will ever go back to the way they were before this drug. I’ve missed work and the smallest stressor sets everything back in motion again. My physicians have been very supportive and are trying to get things back to where they were before this drug sent me over the edge. I am so concerned this is normal from here on out. Will this ever go away?
Bev
My primary physician has been pressuring me to try Savella. But, after thoroughly researching this medication, I won’t take a chance. I have tachycardia, controlled by meds right now. And, with three bypasses at the age of 45, I can’t see any benefits that would outweigh the risks. I support a recall.
Gloria
No one should have to choose between a medicine that can, and has proven to cause so much morbidity and be life threatening to so many individuals or else to be in severe pain. This is a completely irrational approach to practicing medicine. If you read many of these posts you will find a common thread, that being the significant damage that continues to persist after the med is stopped. If this fact alone doesn’t raise a red flag I question your sense of reason. We are not guinne pigs here! If your health care professional doesn’t take your complaints and concerns seriously then it is time to find someone else who does! It is YOUR responsibility to demand a reasonable degree of care and compassion. Listen to your body and insist on being proactive in your health care! And if your caregiver blindly believes a drug rep. I’ve got a bridge I can sell him/her. I find repeatedly the best source of info on a medicine is those who have or are using it. Hats off to you all.
Niccole
I have been recently diagnosised with fibromyalgia and 6 months ago i had started taking Savella and i have had a big change in the pain i have had with the fibromyalgia. I can definately tell when i have missed a dose. I felt a bit weird when i first started. I would get hot then get cold and tingle all over. I do have to say since i have taken Savella my headahces have become less and less. When i do get a headache tylenol will take care of it to where it wouldnt even touch it before without the Savella. I just wish the medicine didnt cost so much so i could afford it. No matter what medicine you take there is always going to be some risk.
linz
I have Fibro (diagnosed 4 yrs), TMJ, & MS (diagnosed 25 yrs.). I took pain meds for too long, became a major problem. Rehab for that, then on Lyrica,, Cymbalta and Lexapro which greatly helped my pain and gave me my life back. After four years on these meds I heard about Savella and thought it could help with the side-effects of Lyrica (memory, concentration difficulties and 70 lb weight gain). Went to Rhematologist, got on starter pak. Lessened Lyrica gradually from 400 mg/day to 150mg this week. Began second week of full dose Savella (100mg/day). Thought I was doing fine but this week all crashed and hard! My heart was pounding and I had trouble catching my breath, thoughts were eratic – went to ER for EKG, Chest X-ray and blood sugar test. – all ok – bp ok. Rhem. Dr. put me up on Lyrica and 50mg/day Savella. Heart still is racing and don’t feel like myself. Not sure of my next step with this med.
Debra
I started Savella from the starter pack a week and a half ago. After a week my fibro pain was better, I was thrilled! But on the 11th day of taking it, I noticed my heart racing the whole day. The next day my Dr. ordered an EKG because my heart rate and blood pressure was so high! I’m 35 and otherwise healthy! The EKG was normal, but they took me off the Savella. I was weaning off the past few days, but decided not to take another pill as of today – the fast heart rate is still making my life difficult – I’m missing work and time with my family because I feel so horrible.
Callie
I have never taken the time to read a blog before and I must say that I was quite taken back by everyone’s willingness to discuss this medication and the illness that brought it to us. Thank you one and all. Not only do I have important information about this medication, I know that i am not alone.
Becky
I was diagnosed with chronic migraines when I was 17. I have been on many,many different prevenative & pain relife medications. In 1987 I was told I had Fibromyalgia. I had been telling my Dr, No I did not &would not have it. He said he already had it in his charts. It was true. I have a very good,longstanding realationship with this doctor, as do many of my other family. Both the migraines & the Fibro and lupus run in our family. At least 8 people in our more immediate family have fibro or lupus or worse both.That doesn’t count the ones who have already passed away. The migraines have a generations long history (at least 6 so far) They could go back further than that but we aren’t positive about some of the others. I have been on disability for the fibro, migraines & the accompanying depression of chronic pain for about 6 yrs now. My psychiatrist put me on Savella after discussing all the possible side effects. I started the titration package and was doing great, The best relief I had in years. We then increased the dose, after about 2 wks, because I was doing good but we thought a small increase would increase the benifits. Pain wise it did. But then I started turning into the incredible hulk. “You won’t like me when I’m angry”. I was angy & resentful ALL the time. Old resentments turned into major diasters. Everything made me furious. Apparently, in the fight or flight part of seratonin, I fight. The smallest thing made me blow up. And it was like there was no brakes when it came to saying what I was thinking. Horrible, vicious things came “vomiting” out of me with no control. I am in the process of weaning of Savella, with the help of my shrink & psychologist & primary Dr. Now I cry all the time. The dizzines &lethargy & some of the other side effects mentioned by other people are happening now. I should be completely off it in a few more days. Then probablly another week to be completley free. It was good for a while but for people that are sensitive to meds, especially, anything that messes with you seratonin, this drug would proably be a good one to avid.
kim
i just received the starter pack i am petrified to take this and wont after all i have heard and read…. i guess just suffer with the pain and go on with life…
Debra
I started taking savella a year ago. It did seem to help with the pain at first and gave me a little more energy. The last three months I have started experiencing severe fatigue, hypertension and tacycardia. I am so sick that I wish I could die sometimes.
Tina
I have been on Savella for 4 months after being diagnosed with fibromyalgia. Immediately, I had relief of muscle aches and pains and after being increased to max dose, the only side effect I had was a headache. The headaches got much worse and I tried to wean myself off the med and it put me into such a depressed state i had thoughts of suicide (which is something I had NEVER had). It was the scariest experience of my life. I immediately got back on the med due to being so scared NOT to take it. After a few weeks my BP went up very high (i have hypertension but it has been under control). I went back to the doctor and he would not help me get off it and said that was NOT the reason for my hypertension, and told me to see my PCP. She has been trying to get my BP down, changing meds several times, but with no success. Now my BP is 150s over 105s and my pulse is constantly racing even at rest as high as 136. I am really scared and would like to get off this medicine, but don’t know how. My husband works out of town and I am really afraid to start weaning off it again.
J Copeland
The jury is still out for me on Savella. I was on Lyrica for about a year at the highest dose level and it stopped being effective. I was in so much pain I insisted on a visit to my PC doctor and she put me on Savella. It has only been 2 weeks and I have taken it as directed, but I am still in so much pain that I have had to supplement it with aspirin. My bp was already high before being put on this med and I have had a seizure earlier this year, so I don’t know why I am taking this drug as it would seem that this could be harmful. For the past two days, I can really understand the feelings of depression and suicidal idealization, not that I am actively looking ways to do myself in. I cannot take aspirin or any NSAID for too long because it has proven to give me bleeding ulcers in the past. Tylenol doesn’t do anything for me. Lyrica, although very expensive, was effective for awhile, but stopped. And I’m giving this Savella another 2 weeks to see if it gets better.
sharon
I was on Savella and not up to the full dose and I was experiencing hot flushes and chills. I also started vomiting and couldn’t keep anything in my stomach. the Dr. suggested I go to the full dose but it just caused more vomiting. I had to take time off from work because I felt so bad. To me it wasn’t worth it. Going back on Cymbalta.
Christine
I was put on the two week titration pack. Was doing great at first . . by the time I got to about the 8th day of the full dose everything drastically changed. I knew I was getting irratable and a bit agitated on the 7th day because I was upset with my husband for simple things. The next day at work. . My heart was racing, my face felt like it had a bad sunburn, my chest hurt, I began twitching and having involuntary movement. . when I talked nothing made sense, I was very dizzy and foggy in my head. Not to mention the tentacle feeling all over my head. I had to walk out of my job and go straight to the doctors. I was so scared of what was happening. By the time I got to him, I was a real mess. He took me off the Savella instantly. No titrating down. . just stopped. Oh my goodness. . now that opened up a whole new can of worms. I began getting sever migraines. . dizziness was worse. . everything was amplified now. All this during my daughters High School Graduation ceremony. I barely remember a thing from that week. . it’s sad that this drug has deprived me of my most precious memories! Now I’m hoping that things will get back to normal. . it’s been a week off now and I’m still having high blood pressure. . my heart will still race at times. . I have this dizzy feeling in my head, severe constipation, confusion. still having problems remember things. I’m scared I won’t go back to how I was before. My doctor wants to put me back on at a lower dose since it was okay at 25mg twice a day. . but I’m afraid to touch that medicine ever again.
Toni
I was put on Savella in order to improve pain due to neurpoathy. I have only been on the titration pac and already at 10 days have decided to go off due to rapid pulse that at rest is up to 105 beats per minute. I also experience excessive sweating and hot flashes at times during the night. I hope that once off this medication I no longer experience these unusual side effects. I will, however, continue my other medication Lyrica.
Sue
Been taking cymbalta for many years for the fibro and depression, and was willing to try savella at request of rheumatalogist, with whom I just started to visit. Began taking savella on April 24th. At first, was really sleeping better, even though I’ve been on zolpidem for awhile, sleep without interruption was rare. I could have written novels with the dreams I had. Then, after a week and a half, was crying at the drop of a hat, figured it was withdrawal from cymbalta, so continued. Well, the crying went into weeping, with intense back, neck, and shoulder pain..not all happening at the same time. Increased sweating started to happen, and was very weak. Blood pressure started to spike until it got so bad with the headaches I had to go to primary doctor, as rheumy is 70 mi.away. Started on blood pressure med, and stopped taking the savella, and went back on cymbalta. Body is still recovering from all of this. Have not had any strength, and I’ve been in bed for days. I’m glad that I started researching the savella, as I am convinced this is what threw me into a bp crisis. I also believe that I was heading towards high bp anyway, but this just put me over the edge. I didn’t like how I was feeling on this, and my husband was ready to commit me! I’m sure that for some folks, this will work, but please be wary. For me, it only took a month and I was not willing to continue taking a chance with my life.
Lorena
I have read all of the comments about Savella on this site. I was diagnosed with fibromyalgia after my 4th surgery in 2 years. Nothing worked. I tried Lyrica, Neurontin made my heart race, Cymbalta, nothing took away the pain. I thought, this isn’t right, I’m a breast cancer survivor, I can’t be torn down because of this weirdo disease. I’m a fighter. My doctor gave me Savella. I took the 10 mgs, nothing, on the 2nd 25 mg I stood up at work and immediately noticed that my feet weren’t hurting and I could stand up without pain, my hands weren’t aching. I was shocked. I don’t take the full 50 mg. because that does make me ill. I break it in half and take the 1/2 twice a day. I found that salty foods agitate the FM. This drug gave me my life back. I am still not up to par with my energy level, but at least I have some. Hang in there. You’ll find something that works. My girlfriend tried the Savella, and it didn’t work at all for her. I am very thankful for this drug. I don’t have to set the alarm clock at 4:30 to take pain medicine, go back to bed and try to sleep another hour, so I can get up at 5:30 and get into the shower etc. and get ready for my day. And you are right, no one understands unless they’ve had FM what you are experiencing.
ShaRhonda
I started taking Savella abt 7 days ago and was really optimistic because of the praise it was given by my doctor. Haven’t felt any pain relief and my daughter mentioned that I am very cranky and irritable. I am also experiencing the head aches, upset stomach and I am beginning to sleep alot the higher the dosage gets. I was gonna give it the full 2 weeks on this trial pack but after reading all of the comments regarding high blood pressure and heart attacks IDK! Not a big fan of synthetic remedies but with the pain Fibro causes I was willing to try anything. Have an appointment with a Rheumotologist but a this point I am not sure if that will even help.
Amy
I have fibromyalgia and arthritis for over 10 years and have tried everything out there. My pain management doctor put me on savella at first it did work and then the sweating started the pain in my side and my heart felt like it was going to pound out of my chest.My doctor talked to the drug rep. and they said I needed to give the pill more time so my body adjusted to the savella. Well a month later they weened me off the medication. I have been off the medicine for two week and my heart is still racing, when will it be normal again? They need to take this medication off the market
Maura
I started taking savella about 22 days ago. I can tell you that i have fibromyalgia, tried lyrica, cymbalta, and now this. I knew something was wrong because I do not feel like doing anything, not even taking a shower, I am getting depressed. It has not helped the pain at all. I was freezing the other day at work and everyone was hot. I wanted to put a jacket on I was that cold. I just came across this site tonight and now know that I have to come off the Savella like I had to with the other two. This is very scary to know that people can get heart problems (that runs in my family). I will call my doctor Monday. I do take pain meds and that is the only thing that has helped for past couple of years. They do not work much anymore either. I do not want to go to the strong drugs like oxycodone or whatever and I know my body is addicted to these pain pills but what can you do. stay in bed all day. I know that I am getting worse , the pain, it is hard for me to go to work anymore and I for the first time feel like giving up. I do not think many people understand what people with fibro go through. Only people with fibro know what I am talking about. I appreciate you all telling your stories. I pray we all find peace and someday will be pain free. God Bless.
Gale
I started Savella 3 days ago. The first day was fine, but since then I feel pinpricks all over my body, dizziness, nausea, headache. Can this be good for anyone? I am going off it.
Diane
I’m sorry I did forget to add that I have been having some very odd dreams and a couple of what I would call nightmares. This started after I started on the Savella.
Diane
I am on week 1 of Savella and I can tell a slight improvement. I did have an upset stomach once during the week but I can not say for sure it was the medication. I have 7 more weeks of samples to take. I will continue to take them but I might have to add back my pain pills. I wish everyone good luck with this medication and good luck on finding something that works for those who have not found any relief.
DeeDee
I took this medicine. I have Fibromyalgia/Chronic pain. I have taken Gabapinten and Tramidol; which resulted in deep depression and anxiety attacks like you wouldn’t believe. I have a low tolerance for drugs anyway. So I knew that me taking anything for my Fibromyalgia was going to be tricky. I was prescribed Sevalla. First a trial pack and then a prescribtion to fill when I got finished with the trial pack. My doctor insisted that I only half the pills in the trial pack; so the first day was 12mg pill and I would half it and take 6 mg instead because she knows I have a low tolerance for any medicine. Needless to say that 6mg pill changed my mind really quick. That is all I had to take to realize that Sevalla needed to be throwed in the garbage. For three days after I took that half pill I was so dizzy. I felt like I was walking on the moon and bouncing off the walls when I walked down the hallway here at my house. I thought I needed to go to the hospital because like I said I have taken a lot of meds for my FM and none have worked on my chronic pain/fatique. Ever since I took that Sevalla (about a month ago) I have dizzy spells for no reason. I ws put on Zoloft and it causes sever miagraines so I stopped taking it. So as of now I am taking ibuprofen for my pain. That is the only medicine I have been able to take that doesn’t make me feel sicker than I already am. FM is a horrible “disease”. Or syndrome as doctors call it. Maybe they should walk a mile in our shoes to see just how it feels when you cant do anything because of the pain and swelling and all the other things that go with it. Most doctors say its all in our heads. Give me a break I rather be working. I have three kids and no income because I can not work like this. It will never go away. But SS seems to think that we want something for nothing. I have worked all my life. Day for Day. I use to be very athletic and have always been healthy. NOW I am lucky to sleep at all when I go to bed. I can’t even sit in the floor and play with my 3 year old son. I was diagnosed 2 years ago and now I am angry at the crappy treatment I get when I go to the doctor. My last appointment my doctor didntt even show up. Instead he sent his nurse practioner in to tell me that they couldnt write a letter stating I am disabled. So she prescribed Zoloft to shut me up I guess. And I am not taking that anymore. Called my doctor today and low and behold I get the voice mail. I left a message but no one has called me back. So I am in search of another doctor that has great bedside manor. Good luck everyone.
Connie
I was given Savella for my fibromyalgia and it worked great for my pain, however, I began having chest pains and very severe depression. I went to my physician and she informed me that the drug reps had told her these were common side effects and would go away after a couple months and to try to continue to take it as it had helped with my pain. I did this and my depression became so bad that I spent the majority of my time crying and wanting to die and my chest pains became so intense that I had to go to the ER and back to my personal physician and informed her that I could no longer take this medication as I really felt that is what was causing both problems. I was “weaned” off of the medication and starting noticing improvements.. I have been off of it for about 2 months and have got the pain back from the gibromyalgia however not the chest pain and severe depression.. I do believe this should be recalled.
KathyMc
I developed serotonin syndrom and hypertensive crisis’s 10 months ago after taking this drug for just 4 days at the lowest dosage. My first episode consisited of high fever, blood pressure of 240/160, high heart rate of 110, difficulty breathing, feeling as if I was going to pass out, uncontrollable shaking and jerking, difficulty speaking and walking due to muscle tightness/heaviness, . I was taken off the medication immediately and after 10 months continue with episodes although they are not as severe or frequent as initially, they are still very scary and sometimes blood pressure is at dangerous levels. I have had over 90 episodes, been in and out of ER rooms. intensive care and to some of the finest hospitals within the US with little help My family physician and counselors have stuck with me throughout this time and for that I am ever grateful as they haven’t given up on me. My employer and supervisor’s have been unbelievably good to work with me through these as I would have lost my job long ago due to missing so much work. I have had to be brought home from work by my friends and coworkers due to having the episodes and find it very difficult to go to work worrying I will have one while there and the burden I put on my coworkers/supervisor in dealing with the situation. I was a healthy woman with no other health problems other than fibromyalgia and actually had low pressure most of my life. My life changed the day I took this medication. I urge anyone considering to take this medication to think very seriously about the possible consequences should they develop severe side effects. Please do your research on this medication and other drugs that can not be taken with it (such as migraine meds and other SSRI’s) due to complications. I’ve walked in your footsteps with with the pain and fatique of the fibromyalgia symptoms and know how your life is effected by the fibromyalgia so I know the desperation you feel to find something/anything to help you but I hope that my experience may cause you to think twice before taking a drug that can have life threatening consequences no matter how much you hurt. My faith in God, family and friends have got me through these months otherwise I’m not sure I would have made it. I have reported my severe side effects to the FDA and to the manufacturers of Savellla, Forrest Pharmacueticals in hope that the drug might be re-evaluated and pulled from the market until more research can be done on this drug. Please don’t take this drug without reading everything you can and evaluating the possible consequences .
Eris
Fibromyalgia and chronic pain suck. There is absolutely no denying that. I took tramadol for years, just to get through the day. As time went on, I had to up my dosage to a level I was not comfortable with. Since going on Savella about four months ago, I’ve been able to ween myself off of pain medication. Savella doesn’t make the pain go away, but it seems to create a shift in my mind to where I tolerate the pain far better. It’s more like discomfort than pain. It works very well for me. I educated myself about the side-effects before hand, so I knew that hot-flashes and nausea could be a problem. As I’ve gradually upped the dosage, I’ve had a bit of both. It was short lived, though. This medicine has made a remarkable difference for me. I haven’t had any blood pressure problems, thanks to the fact that I take inderal for migraines. It’s certainly more tolerable side-effect wise than Lyrica or Cymbalta, in my mind. No weight gain either! Its been used in Europe successfully for enough years for me to feel confident that the FDA approval was a wise decision. There are far worse things you could do to your body. If you’re sensitive to stimulants… perhaps you should avoid it altogether. I am impervious to them, and Savella works for me. I’d recommend trying it, when nothing else has worked.
Coleen
I have been battling Fibromyalgia for over 3 years. Just diagnosed with it, thought, 2 years ago in January. I was on Lyrica (450 mg a day) and Cymbalta (90 mg a day) until April 5th when my doctor decided (by my request) to let me try Savella. The pain never really got any better, but it wasn’t any worse until April 16th. I woke up with the most horible upper abdomn pain I’ve ever had. After spending 4 day on pain pill just to take the edge off the pain, my doctor put me in the hospital with accute pancreatitis. I asked if it could be a side affect of the Savella and he said that if it were, it would have come on sooner (mind you this was just 4 or 5 days after going up to 50 twice a day). I have also experienced the chest pain (for the last several weeks), extreme sweating, anxiety, mood swings and depression (had to drop my Cymbalta from 90 to 60 a day when I went on the Savella). I haven’t even told anybody about the chest pains that I’ve been having but after reading this, I think that might be the BEST thing for me to do. I do feel like my heart races once in a while as well. The one good think about the Savella is that I haven’t put on (in fact I’ve taken of a FEW) pounds. I probably put on 40-50 pounds while I was on the Lyrica. I’m going to be 41 in a week and a half, have a 16 year old son that will graduate high school next year, have a husband that is a PEACH (most of the time) and I really don’t care to continue living this way. Like I said, the pain is really not worse but it’s not any better either. I know that each med is different for each person, but I sure hope everybody realizes what better for them before it’s too late.
Penny
I have had fibro for 10 yrs. Have tried numerous meds and have been on Savella for 10 months I guess. I felt great for a while although my husband kept telling me things that never use to bother me all the sudden became big deals. My previously perfect blood pressure became elevated so I began taking a BP medicence to counteract that. I had mood swings, excessive sweating, insomina, irritablity, headaches. But the pain was better so we deal with all the above garbage. This past week my BP soared and my BP meds had to be doubled. My heat rate also soared. I am dizzy and very scared that I have had heart damage. I am on day 3 of weaning myself off the Savella and my doctor said it will take 6 weeks. When I look back I can now see how my outlook has been tainted by this also. Depressed, helplessness, hopelessness and even suicidal thoughts. I have a wonderful marriage, a beautiful child and a good support system, plenty to live for and faith in my God. I believe Savella has robbed me of my life this past year and I pray it has not damaged my heart and rob me of my future as well. Take it off the market and add me to the lawsuit.
Linda
Delores who wrote on April 8th, 2010. I feel alot like you do but have only experienced the pain for the past year. I just found out that my diskogram showed that nothing can be done for my back. I found out that I had fibromyalgia 3 months ago and just try to live with the pain is hard enough but coming to work with the pain has gotten to the point of putting in for a medical retirement. I know exactly how you feel. It’s gotten to the point that I don’t even like to get into the shower. I hurt, or I am tired and out of it on my pain pills. I do shower though, I wouldn’t want to offend any of my co-workers or my family however, I wonder some time if leaving this old earth would be better than staying around and living with this for the rest of my life. I will be 53 in June, and have a few years left to hopefully do things that I enjoy. I have a 9 year old that doesn’t understand Mommy just don’t have the energy that I once did. My husband lost his first wife to cancer and took care of her the last 4 years of her life. He said he pratically lived in the hospital and I feel bad that my life has turned out like this. I know he is affected by all of this. He hates hospital right along with me. I’m not at deaths door by any means but am not able to enjoy life anymore. The doctor has me on Lyrica which only helped me gain weight and does nothing to help rid me of the pain. I had gastric bypass in 2008. I got hurt at work. My T5-S1 disk is cracked and I have a bulging disk. I am getting an MRI on both of my shoulders to see if I have tore my rotator culfs. The doc said that I probably got Fibro by my injuries. I thought I needed surgery on my back because the pain got worst but what it was the pain from the fibro was intensifying the pain in my back. My husband tells me my pain tolerance is down in the basement. I can’t live without my pain medication. I can’t even crawl out of bed without it, but I do only to take that and Lyrica and go back to bed for 30-45 minutes until the pain goes away and I can move my limbs enough to get dressed and out the door to go to work. They have me on limited duty until my retirement comes in. I am on paxil for my anxiety and Tamazapam for my insominia. I tell my husband I’m all broken down and not good for anything. I do continue to live because God decides when I go home not me. Although I am waiting for that day when I can go home and see Mama and Daddy and my little one. In fact, I do alot of dreaming about that day. Until then I will continue to hang in there and try to make my life somehow liveable and keep being mommy to my little 9 year old Melinda. I have 2 older children in thier 30’s that have family of thier own. Listenining to Christian music soothes my soul and gives me a peace that this old world doesn’t understand. You take care and God Bless.
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