PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases

Posted November 16th, 2008 by

tysabrilogo.gifPatientsLikeMe recently released a new PatientsLikeMeListen™ report: “Did the July 2008 PML announcement affect the Tysabri brand?” Among our findings, the report reveals that MS patients retained an overall positive perception of the Tysabri brand despite the July 2008 announcement of two additional PML cases.

When we originally covered this topic back in August,  the discussion among our members was just starting to heat up.  This report analyzes the patient perspectives shared on our site after the initial PML announcement, and shows how they are empowered to educate themselves about this topic.  Take a read and let us know what you think!

PatientsLikeMe member dwilliams


14 Comments

  1. After 2 yrs. of Tysabri treatments I had to discontinue. Venous access became ^ difficult & I.V. would infiltrate soon after initiation despite expertise of Nurse, & stability of patient. That was about 3-4 yrs. ago & venous access is still difficult on me. (back to Copaxone)

  2. I am about to receive infusion number 31 or 32? My experience has been great. I have had some mystery illnesses this past year but my system has been pretty stable and predictable again in the last 5 months. Yes I am aware of the two new cases of PML and I keep positive that the percentages will win out. I am cautious about adding any new drugs to my regimen. So far, so good. I am waiting with hope for a better Tysabri. We have come very far.

  3. MS is such a challenging yet hopeful condition. It is good to see that the horrible news of the PML cases did not have an overly-significant affect on the community’s optimism. As we are here in July 2009, it would be wonderful to see an updated report, considering there have been new cases. Stay Optimistic as advancements are being made!

  4. There have been more deaths just reported and I am surprised to not see any mention of the re-bound effect on those coming off the drug.

  5. Just had my second dose of Tysabri and am still scared to death about the pml but nothing else has slowed down my progression so as scared as Iam I will still try to be optimistic. Pittsburgh is known as a sports dynamo and it is so will it be known for world class medicine and MS treatments. I also participated in a clinical study involving botox for the bladder. I thought it was a miracle! lol Works like a charm!!! Not where I wanted my botox… but what the heck it still worked. lol I love to laugh and believe it can be the best medicine after all. Take care everyone. Paula

  6. I am going for my fifth Tysabri treatment and thanks be to God all is going well. I am staying hopeful and optimistic!

  7. Just had #30 infusion on 1-28-2010. I feel great!!! I still have my moments of fatigue and pain, but compared to all the things I can do now that I couldn’t do 5 years ago!!! Thank God for Tysarbri!!!

  8. I have been on 2 of the orginal DMD’s and despite them I’ve continued to worse. I have (had?) RRMS but haven’t had a remission in a very long time only a worsening of my ability to walk and do other things.
    I see a specialist is very knowledgable and he is very optimistic about Tysbri. He went over all the risks but feels it may actually be safer than some of the others, and that the cases of PML have been so few in number and of those, most had an underlying problem also so it’s not a definate fact that it was a direct cause of the Tsybri itself. He put me on it and is optimistic that it will help me more than any of the other drugs have. He seems to know a lot more than any other doctor I have ever known and he’s a big believer on it and has said he has seen people go from being WC bound to walking independently, and he looked at my cane and said “we’re going to get rid of this”.
    I would still like to hear of others’ personal experience with it.

  9. I recently had my 37th infusion of Tysabri and have been holding steady since I started. When I first went on Tysabri I was not able to walk and was using a wheel chair or elec scooter to get around. Now I can walk using a walker. I dont walk smoothly but at least I can walk. I had tried Avonex, Copaxone and Rebif but was unable to tollerate any of them. I am very thankful for Tysabri.

  10. I will be having my 43rd infusion on March 5th. What a difference Tysabri has made in my life.
    I had Tried Copaxone and Rebif, both for 2 years. Neither one of them was making my MS any better. I was sick more often due to side effects.
    Now that I have switched to Tysabri I have not missed a day of work and have resumed doing some things that I had given up because of this disease. I will never go back to doing shots.
    My MS buddy was legally blind due to MS. We have our infusions together, he has regained his vison. Got his DL Back and went out and Bought a New 2010 Camero, He is really thanking the makers of Tysabri. I can’t say enough good about it.

  11. I have ben on tysabri 4 two years an have had no flare ups but doctor jus let me know i need to come off of it because of the 2 year study, i can stay on it but pml really scares me. I do know one thing it had ben nice to be taken tysabri an with no flare up. good luck to all

  12. Eleven (+?) Deaths are dismissed, for the most part, with Tysabri. But ONE death due to a previous condition is used AGAINST CCSVI treatment…..find that interesting? me too…

  13. Had 36 infusions November 2009– couldn’t find doctor willing to continue tysabri infusions. First month off was miserable emotionally and physically draining. Found neuro & re-started August 2010. First week had huge Energy and balance improvement but didn’t last. Anxious for 3rd infusion next week- hoping for longer lasting effects.

  14. […] about a serious and sometimes fatal side effect of Tysabri (occurs in about 1 in 1000 patients).  The results revealed that patients were indeed frightened by the announcement, but these patients were also so positive […]

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