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

By: The Value of Openness: The PatientsLikeMe Blog » Treat Us Right: Mapping Patient Sentiment About Medications

Wed, 15 Dec 2010 19:13:04 +0000

[...] 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 [...]

By: Barbara Kostreva

Barbara Kostreva — Mon, 27 Sep 2010 15:59:11 +0000

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.

By: belter

belter — Sun, 08 Aug 2010 15:24:40 +0000

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…

By: cyndi

cyndi — Sat, 10 Apr 2010 03:35:05 +0000

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

By: Walkin

Walkin — Sun, 28 Feb 2010 22:15:16 +0000

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.

By: Romintek

Romintek — Sat, 27 Feb 2010 21:35:10 +0000

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.

By: L

Fri, 05 Feb 2010 13:18:45 +0000

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.

By: lisa conner

lisa conner — Sun, 31 Jan 2010 08:18:36 +0000

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!!!

By: Jim

Jim — Wed, 11 Nov 2009 23:41:38 +0000

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

By: paula mieczkowski

paula mieczkowski — Mon, 17 Aug 2009 20:08:45 +0000

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

By: catmandu

catmandu — Thu, 09 Jul 2009 00:38:48 +0000

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.

By: EmPath

EmPath — Wed, 01 Jul 2009 17:40:57 +0000

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!