PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases
PatientsLikeMe 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!
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)
Comment by Catherine Morris — June 3, 2009 @ 8:51 am
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.
Comment by Donna — June 17, 2009 @ 5:04 pm
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!
Comment by EmPath — July 1, 2009 @ 11:40 am
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.
Comment by catmandu — July 8, 2009 @ 6:38 pm
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
Comment by paula mieczkowski — August 17, 2009 @ 2:08 pm