Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Tuesday, September 09, 2008

My Tysabri Diary..., updated Tysabri information:

The following opinions were expressed by a very learned acquaintance of mine whose wife is currently on Tysabri (I believe she is on her 26th infusion):

"Yes, we got our first two cases of PML since the re-introduction of Tysabri. And yes, cases in monotherapy, but there are positives here which may in the long run prove very beneficial to the opinions of Tysabri....,

1. Both patients are alive and were diagnosed due to the European surveillance program (remember, they do not follow the Touch program that is in place here in the US).

2. One was diagnosed VERY early and is almost completely recovered, having NEVER been hospitalized.

3. The other patient was diagnosed somewhat LATE, given that the patient presented with symptoms suggestive of PML with an atpical MRI. This patient should NEVER have been given more Tysabri and high dose steriods. Yet despite the above, the patient APPEARS to be making a recovery.

4. Again in a sense, these two cases provide a nice range. One diagnosed very early, one diagnosed rather late. Both are alive and APPEAR to be recovering. Both cases are being actively followed by ALL Tysabri prescribing neurologists, via conference calls by Biogen. Should these patients continue to do well, it will go a long way to changing the risk/reward ratio, IMO. The risk was previously assumed to commonly be death, or at best severe permanent disability.

5. In addition to the neurologists, a great many of the CURRENT Tysabri patients have been told of these cases and the fact that the patients ARE ALIVE and APPEAR to be recovering. This is being done via the neurologists and/or the infusion nurses (and most do not want to come off Tysabri).

6. THUS FAR, there have been no new confirmed cases in the last 5 weeks. ALL of the 17 suspected cases in the database have been resolved to satisfaction.

7. Biogen has re-stated their business plan which still includes 100,000 patients on Tysabri by late 2010. They have stated that their projections have always assumed additional cases of PML. In fact, these cases came later than originally expected.

8. Because the second patient had a prior history of immunsuppession, and may in fact have been immunosuppressed BEFORE starting Tysabri, neuros are going to be even more cautious about checking and monitoring the immune status of potential Tysabri patients.

9. Tysabri is now postioned to be used BEFORE the strong immunosuppressive agents. Since Tysabri's re-introducton, a great deal of patients with prior STRONG immunosuppression (and who were still progressing) have already been exposed to Tysabri. Going FOWARD, I believe there will be fewer of these high risk patients going on Tysabri. Again, most patients progressing on the CRABS will now go to Tysabri PRIOR to the strong immunosuppressants."

I hope that some of the above information will also help calm the fears of current Tysabri uses (not many are afraid of PML), and help calm the fears of prospective Tysabri patients.


Love, Lauren :)


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