I started Tysabri “treatments” at the end of July and experienced an unbearable headache for 8 days following my first infusion. Hoping this was just an adjustment period for the drug, I continued on with my second infusion which has turned my life into a living hell. Upon reporting these symtoms(and not being asked ,as is standard procedure prior to each infusion) my Dr. ordered labs & took a wait & see attitude. While I’ve been waiting to see I’ve twice been to my local ER for these headaches which have resulted in infusions of Depakote & Dilaudid plus multiple oral pain meds. which gave very,very temporary at best relief from these headaches. The risk involved with this treatment, to me, at this point, far outweighs any benifit that anyone could possibly post here or elsewhere. Also worth mentioning is the fact that the producers & distributors of this poison are currently under investigation by the SEC for I’m assuming making false reports to investors re: the success of this treatment. You can find much more negative input anywhere you look re:this treatment than positive in any venue you decide to research it. Myself & my husband are a stones throw from seeking legal action against Biogen-Idec Corp. as these treatments, which have been discontinued by the administering “physician”, due the the fact that the effects of this treatment in most everyones opinion that we have spoken to are a result of Tysabri & the main cause of the last 2 months of missed work,pain&suffering & immense stress for myself, my family, my friends and all that are concerned with my fight against this terrible disease. For those of you recieving benefit from this “snake oil”, continued prayers & good luck to you. For those it may be suggested for my advice is to be afraid & run like hell from this treatment until the current “human guinea pig” testing & further info is gathered. Thank You & God Bless You all!

My boyfriend was treated with Tysabri only three times. Only four days after the first infusion he became ill with a UTI he has been fighting ever since. He has had seizures, aspiration pneumonia, has trouble speaking, problems with vision, cognitve problems, and is having problems even eating. He currently in a nuring home and is total care. If you are considering Tysabri to treat MS, do all the research you can your self. It seems doctors aren’t that familar with PML. PML is caused by the JC virus which is present in most of us. When the immune system is surpressed it can cause the virus to explode and over take the body. You don’t have to catch PML. It is already there waiting for the right time to expose itself. I had read all the information on Tysabri I could find and we decided that with the information that the benefit outweighed the risk, but the information didn’t give us the information about JCV that we needed to make an informed decision.

While I sympathize with ANYONE who experiences issues with Tysabri or any other medication, I consider Tysabri my life saver. I’ve been on Tysabri for close to 3 years now. Prior to Tysabri I was a MESS…I had no energy, the medications (Avonex, Rebiif, Cellcept) made me feel sick and depressed. I felt like I had already died! On Tysabri my life is back to normal. I can work, I have enough energy to enjoy my life and I am happy. I agree with Drew that decisions should never be made in haste but for me; Tysabri saved my life! Good Luck to All no matter what your decision may be.

Regarding Tysabri: After being on a beta-interferon for six months after my diagnosis of MS, I began looking for a different approach in handling my disease (or so I thought), by going onto Tysabri. At the time, I was questioned by several other people with MS about the safety and prudence of my knee-jerk decision regarding my start of Tysabri. One person even asked me, “aren’t you afraid of DYING from the drug?”, to which I hastily responded that the chances of me coming down with progressive multifocal leukoencephalopathy (PML) were only one in a thousand (a rough estimate at the time). Everything was fine during my first six monthly rounds of treatment, until the seventh month… that’s when my white blood cell count started going through the roof. My neurologist and her staff were puzzled and alarmed at the same time, until two weeks after my seventh infusion. I’ve had bad headache/migraine-pain since my diagnosis of MS, but NOTHING compared to the type of head-pain I began having after my seventh infusion period of Tysabri. This is when all hell started to break loose for me. I started experiencing unimaginable pain in my head, and remarked to both my mother and my girlfriend that it literally felt like hot grease was being poured directly onto my brain. Two days later, I told both of them that I needed to be taken to the hospital, and fast. After being examined by a wise and seemingly very experienced older emergency room surgeon, I was diagnosed with Viral Meningitis, and was admitted immediately and started on a very aggressive antiviral medication regimen. I went on to spend two days and nights in that very hospital, and have never experienced as much pain before, as I did in that period. My suggestion to anybody who is considering therapy with Tysabri? – don’t leave your house; don’t go to the grocery store; don’t shake hands with anyone; don’t even go outside… Sure, Tysabri does a wonderful job of suppressing the immune system and halting attacks and relapses of MS and Chrone’s Disease dead in its tracks, but that’s the key word – dead. We are surrounded by germs – viruses and bacterium alike, and our immune system usually does a rather remarkable job of thwarting these unsavory bugs. But when we start tampering with the immune system itself? – we start inviting in illnesses that we would normally just shrug off, with disastrous results. I should have heeded the warnings and remained on a tried-and-true therapy of betaseron for my fight against MS; but then again – hindsight is ALWAYS 20/20. But I’m just one of the lucky ones – the patients that died as a result of Tysabri don’t get a do-over. All in all? I’ve learned not to be too hasty in making decisions, especially when it comes to medicine. Experimental does NOT always mean successful…