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Tysabri For Multiple Sclerosis Linked To Another Death

Posted by Jane Akre
Friday, December 19, 2008 11:46 AM EST
Category: Major Medical
Tags: Tysabri, FDA and Prescription Drugs, Biogen, Multiple Sclerosis

Tysabri linked to another death.



IMAGE SOURCE: Tysabri banner ad, Tysabri Web site

The popular multiple sclerosis drug, Tysabri (natalizumab), appears to promote a rare brain infection and is linked to the death of another multiple sclerosis patient.

This would be the fourth such infection reported among Tysabri users in five months since the drug was re-introduced to the U.S. market in 2006, reports bizjournals.

It was pulled from the market in February 2005, after three patients contracted a brain infection, two fatally.

*New * The American patient’s death was reported to Cambridge, Mass-based Biogen Wednesday.  The patient had been diagnosed with PML, or multifocal leukoencephalopathy. The virus invades the brain causing irreversible damage.

Four cases have been reported since the drug was introduced in 2006. Three have died. This patient had received 14 Tysabri infusions before falling ill.

Reuters reports that the fourth case of infection occurred in a European patient who had been taking Tysabri exclusively for 26 months.

The researchers, who conducted an autopsy on an MS patient, tell Reuters, that it may be possible to make the drug safer by giving patients treatment "holidays" from time to time to allow the brain's immune protection to recover.

Tysabri is the second-best selling drug for Biogen Idec and is co-owned by Elan Corp, a drug company in Ireland.

Severe brain infection is predicted by drug makers to occur in one in every 1,000 patients. 

"Whether or not treatments other than prolonged, uninterrupted dosing may benefit patients with MS should be tested in controlled clinical trials," Dr. Olaf Stuve, a neurologist at the University of Texas Southwestern Medical School in Dallas, said in a statement.  

43,000 people have reportedly taken the drug since 2006.

Fred Baron, a Democratic party fundraiser and well-known environmental trial lawyer, sought treatment with Tysabri for his multiple myeloma, a cancer of the bone marrow, though that was considered experimental.  

His condition became known when his son, Andrew, fought with the Mayo Clinic to obtain permission to use the Tysabri. Baron died in October.#


Anonymous User
Posted by Enfermera
Friday, December 19, 2008 1:41 PM EST

"Reuters reports that the death occurred in a European patient who had been taking Tysabri exclusively for 26 months." This is not true. Another case of PML was found in a patient from Europe who was on Tysabri for 26 months. He did not die. According to Bloomberg News, the patient who died was from the US. The US case was diagnosed in October. Here's the link to that story: LINK

Jane Akre Injury Board Community Member
Posted by Jane Akre
Friday, December 19, 2008 1:55 PM EST

Right you are and sorry for any confusion we caused. There have been three deaths and the fourth is a reported case of infection.

The story has been corrected!

We strive to be responsive and responsible- so thank you for your help!!

Anonymous User
Posted by Enfermera
Friday, December 19, 2008 2:41 PM EST

Glad I could help! I'm currently on Tysabri and just had number 15 yesterday. I've set up Google alerts on Tysabri to keep me informed on pertinent issues, that's why I know about the death in the US.

Personally, I would much rather roll the dice and take my chances of getting PML than to go off the medication. If Tysabri was not available I believe I might not be here today. Tysabri has stalled my progression for now.

Jane Akre Injury Board Community Member
Posted by Jane Akre
Friday, December 19, 2008 3:17 PM EST

I'm so sorry to hear about your condition and your concerns. Have you looked into alternative/complementary medical remedies? Have you researched accupuncture?

You may be suggesting to me another viable story here. please let us know what other remedies you have sought out!

And thank you!


Anonymous User
Posted by Enfermera
Friday, December 19, 2008 5:05 PM EST


I haven't tried acupuncture yet. I do see a chiropractor who practices the Gonstead Method. He has certainly helped me with pain. He's more than the typical pop-your-neck-and-back doctor; he really adjusts areas of the body that correspond to pain/ailments. A few days ago I casually mentioned having problems with my ears. I blew it off as trigeminal neuralgia. He asked me a series of questions like do your ears pop, does your jaw pop, where is the pain, do you occasionally bite the inside of your mouth, etc. Of course I answered yes to all of those questions! He then asked me open my mouth wide and he proceeded to put pressure on each side of my cheek where the mandible and maxilla meet and had me close my mouth. I could feel the ‘pop’ and my earache went away immediately! He is yet another one of my fantastic doctors I see. I go to him every three weeks.

I also take a lot of vitamins and eat healthy. I stay away from processed foods, nitrites/nitrates, wheat products, fried foods, fats (except for olive oil and a few nuts) and milk. My husband just recently added the last one after reading about its inflammatory process and how it’s not a good thing for MS patients. Funny thing, when I cut milk products out of my diet, my headaches went away. The headaches weren’t minor ones, either; they were more like migraines. Imagine that! The only time I get them now is after my monthly infusion and they’re not as painful or debilitating as when I consume milk products.

I hope this helps. I will say I have lost more than 100 pounds since I started Tysabri in September ’07. I don’t know if it’s because I’ve changed my diet or if it’s the Tysabri. It’s possibly the combination of the two. It’s certainly not because I exercise. My mobility and heat sensitivity make that almost impossible. I do know that research has not been conducted on Tysabri and its effect on metabolism. I’ve suggested it to one of my neurologist’s at UCSF.

Anonymous User
Posted by Jane Akre
Friday, December 19, 2008 8:46 PM EST

Wow Enfermera- You are my hero!! Someone who has taken their ability to understand their own condition and help direct their own care combining the best of what conventional and alternative offer. Good for YOU!!! AND it sounds like you have someone interested in healing as a chiropractor- not all physicians have the ability to heal---prescribe medication- yes, they know how to do that. Anyone chime in on accupuncture for MS? Please join in this.

If not I will do some more research and get back. Some healing thoughts everyone to Enfermera- no matter what your background and belief, that does seems to do amazing things!!

Anonymous User
Posted by someone
Saturday, December 20, 2008 7:55 AM EST


have you investigated on all the medications of the HIV drugs that lead people to death ? and that HIV=AIDS is a fraud hypothesis ? Many journalists dont want to study that area...

Anonymous User
Posted by James Hawkins
Saturday, December 20, 2008 10:17 AM EST

MS sufferers should research LDN--Low Dose Naltrexone. Lot of info on googleldn.com.
Many claim they owe their life to this low cost
and almost side effect free drug.

Anonymous User
Posted by Paul Manning
Saturday, December 20, 2008 10:25 AM EST

Jane, I have secondary progressive MS and there is no medication indicated for me. I have tried acupuncture, reflexology, kinesiology(sp), yoga and a host of other treatments, all to no avail. I found a lot of the practitioners to be charlatans, willing to prey on someone's illness to make a quick buck. One person who really impressed me was an acupuncturist (amonst other things) who had MS himself. After a number of treatments he told me that ethically he could no longer treat me as I was showing no benefits. He is the only alternative medical practitioner I met who seemed to have a genuine concern for the patient rather than the lucre. His name is Dermot O'Connor and his website is LINK if you fancy a look. While I experienced no benefit I know of a lot of people who are indebted to him.

Anonymous User
Posted by Kim Z
Saturday, December 20, 2008 2:52 PM EST

Letter I sent to friends family and ldn advocates if your interested in my history(from Dec 08)

I just returned from my neurologist office with my LDN script in hand. Let me tell you my story. Diagnosed in 2003 with ms in Chicago by a regular neurologist . He started me on copaxone which I had no problem with. I made a appointment with a MS specialist in downtown Chicago and he told me that copaxone is like shooting yourself up with water and then started me on Avonex. Had flu like symptoms but as long as I took Aleve I functioned very well. I was doing a lot of reading and kept coming across LDN. I finally asked my Dr for the script. Surprisingly he gave to me. I waited 6 months before I started after I had another flair. I stopped the Avonex and started the LDN (Oct 2004). My husband notice a difference in attitude and I noticed a difference in tingling in my extremities. I believe that could have been my body healing and I don't necessarily attribute it to LDN. I made a move from the middle of the country to western NY kicking ,screaming and crying the whole way.(Nov 2005) I would have gone anywhere but here. I had a flair that was confirmed with a MRI of the brain and cervical spine. I had severe burning of extremities like a hot iron I could not get away from. Also a lesion in the c-spine that distorted the spinal chord. Found a new nuero did a course of steroids and the new ms Dr wanted me to go on Novantrone. I did all the pre physical tests needed and decide that I had not given LDN a fair chance since the move was incredible stressful for me. During this time I discussed LDN with new GP and NP. New nuero would not give me the script and neither would my GP. Meanwhile I received my LDN from a Dr in Ohio who also has MS herself and is a quad and practicing medicine in her 70's by a phone consult as my Chicago script had run out.. This year (Sept 2008) I finally asked my NP as I was bringing my children for school physicals about prescribing me LDN. He said the Dr was not comfortable with it. My next step was to have my neuro give me a script for a MRI to see how I was doing, Well I made the appt went and discussed what I had been doing for the last 3 years and he did my physical test. At the end he laughed and asked me if I had been practicing. He then gave me a script for a MRI . When I got home I said what the heck I'll call back and ask if he will give me LDN. He gave me 2 months. At this point I knew he had given me enough LDN to cover me until I got my MRI and came back to see him. I have the MRI, bring the disc home and look at it my home computer. This MRI was with and without contrast . I then headed back to his office to go over the MRI. I brought a previous films from Rush Univ in Chicago(2004) to compare with the new one. We went into his office and he brought up the new scan on his computer and I brought out the old one from 2004. I spent about 5 minutes(I looked at my watch) going back and forth between the computer screen and the films I had brought. Half way through he looked up and said "these films are out of order". I said "sorry I was looking at them and matching them up with the new scan". At the end he looked at me and said " Your doing good you might be making me a believer out of this LDN'. I asked for another script and he gave me 6 months. I discussed that maybe this was my course of MS or maybe the LDN was working for me. We also dicussed injectables and he relayed new positive studies on Copaxone which he knew was compatible with LDN. I told him about the previous Dr opinion on it and he mused wether or not some Docs make decisions on there own or are drug companys are invovled in there opinions. He told me his practice has over 2500 MS patients. In six months I'll see if he refills my LDN for me . My point to this story is as a professional when I moved to WNY obviously I was in a flair and my course of action was not working he definitely was correct in not giving me a script. I could have also been on copaxone, avonex or tysabri and I would have broken through he course of treatment I believe with the amount of stress I created for myself. If you are asking you physician for a script you must realize that is his/her profession and respect that. Send info before hand. I believe that the medical articles are all that they want to look at not personal tales. I sent those articles as they came out to the neuro, GP and NP. I DID THIS FOR 3 YEARS- maybe one or two articles a year not 100 personal storys that they do not have time to read.. At the end of my appt I asked if he had others on LDN and he said yes- 2. Both have had the disease longer than me and are doing well . One came to him already on LDN and the other one asked for the script. Maybe I helped open the door 3 years ago for the other two. Maybe the door opens because of me for others. I could have came on here three years ago and said I was denied and never went back to the Dr. Im still working on my GP because I'm sure he has patients with Chrons and othe disease that LDN might help. The Penn state trial I email as soon as the results came out. LDN is working because if it doesn't in a few years I only have myself to blame. I knew if my MRI showed activity then I would be asking for help from the Dr. Neither of the two DR's that wrote scripts would I put on a refering LDN doc list because they are not advocates for LDN but they have let me try this course of action and I hope I am correct. Kim- Buffalo

Anonymous User
Posted by ido
Saturday, December 20, 2008 2:54 PM EST

may the doctor that prescribe tysbari before trying low dose naltrexone stand for trial for causing death.i have seen beautiful results with low dose naltrexone for copd,AS,and artritis psoriatica

Anonymous User
Posted by Enfermera
Saturday, December 20, 2008 8:35 PM EST

I'm sure LDN works for a lot of people, but I will stay on Tysabri. It's the only medication that has stopped the flares. Like I said earlier, if I get PML, then I get PML. I'm ok with the risks. I did (or I should say my husband did)extensive research on Tysabri before I asked for it. I also discussed different treatments with my primary neurologist, as well as the director of the MS Center at UCSF before I went on the medication. I don't plan on going off of it unless it's taken off the market. I'm not willing to mess up what I have right now to go onto another medication that may or may not work. Sorry, I'm a supporter of Tysabri!

Anonymous User
Posted by sue
Monday, December 22, 2008 6:53 AM EST

I started on Copaxone and found the injections EXTREMELY painful. After 3 months changed to Avonex -it appeared to help and even shrunk some leisons. Then progressed to Rebif. It helped but i was unable to get all the injections done so when first Tysabri came out , i jumped at the opportunity. I quit rebif on Friday and rec'd my first Tysabri infusion on MON morning.Monday afternoon til Fri morning, I felt like i did NOT HAVE MS!!! All my symptoms had disappeared!!!! However , by the end of the week i reverted back to my M.S. self. I was so excited to think that ONE infusuion of Tysabri couls do this..i could hardly wait for the next month infusion. HOWEVER, it was the next month when they PULLED the drug of the market because of the reported deaths. When the drug came back on i was excited to start it again because i had an active leison that was continuing to grow. I took several months of tysabri BUT NEVER acheived that state like i did not have M.S. AND the sctive remained active and continued to grow larger while on Tysabri. After the next round of deaths and my non response to the Tysabri , i opted to stop the tysabri. It is my belief that the combination of residue Rebif in my system and the 1st Tysbri infusion which caused my miraculous non M.S. feeling for about a week after the 1st Tysabri infusion.

Anonymous User
Posted by Ned
Monday, December 22, 2008 7:05 PM EST

Hi! Check out the website of Professor George Jelinek, An Australian doctor who has had MS for 10 years, and is symptom free. He is the author of the book Taking Control of Multiple Sclerosis, which recommends a mainly dietary approach:

Anonymous User
Posted by Ned
Monday, December 22, 2008 7:08 PM EST

If that link doesn't work, copy and paste this:


Anonymous User
Posted by Liz
Tuesday, February 17, 2009 6:47 AM EST

Kim from Buffalo - I am looking for a Low Dose Naltrexone friendly doc in WNY/Rochester area. My brother is on Tysabri but he is "gearing" up to try LDN. There is a compounding pharmacist in Canandaigua, NY that compounds this for hundreds of people. He couldn't/wouldn't tell me a doc. HELP!!

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