Neuro update - staying onTy

[pennstater]

I had my neuro appointment yesterday. He thinks I should stay on Ty despite the respiratory infections. My titer is .11 so still negative. He didn't see any advantage to stretching out infusion schedule, as he said no studies to support it. And he pointed out that both with the stretch in later fall/early winter and now, I was missing infusion every other month and still got sick.

So he'd rather still get the stretches where I stay healthy and get it every 28 days and if I miss a month, so be it. Since I have tolerated the medicine and it has slowed progression, he thinks worth staying the course. He is not a fan of the risks/side effects of Gilenya and Aubagio, but would go with Aubagio if I force it.

He did recommend working with primary to coordinate seeing ENT and getting pulmonary testing to rule out contributing causes. I just have to stay healthy enough to get tested

[lindaincolorado]

Hi Kathy,
you might want to add 500 mg of vit C and 400 units of Vit E to your daily routine. If you feel a cold coming on add up to another 1500 mg of C for a few days. I, also, believe in vit D but not to hold off your infections.

I hope you stay healthy

[Remy9111]

I started getting really bad UTI's every month after being on Tysabri for awhile (plus a couple of respiratory infections). When I switched to every 7-8 weeks the infections completely disappeared. Now I never get sick. And my MS did not progress one bit (knock on wood) getting Tysabri on the 7-8 cycle. This was 4 years ago.

I'd do more research and consider pushing your doctor to consider going every 7-8 weeks. My understanding was it was common for neuros to stretch the cycle out to minimize suppressing the immune system so much that one repeatedly got sick. My neuro is the one who suggested it and he is involved with research at a medical school.

Good luck sorting it out. I hear you on the other drugs -- they don't sound appealing!

[pennstater]

Thanks Linda and Remy. I love my neuro but he is retiring. My next neuro may have a different opinion. I get my infusion this week, so we will see. I did start bumping up vitamins.

[sunshine008]

what does titer mean? i'm new to all of this, i begin infusions next week. mine is 0.23. they are awaiting verbal confirmation i'm still jvc negative...yet she said anything under .30 is safe.

does that make sense??

[pennstater]

Hi Jen,

The titer is an index to know if you have antibodies to the JC Virus, and if so, how strong. Anything under .2 is negative, .2-.4 is indeterminate, and greater than .4 is positive. You are in a safe range. As the titer increases, the length of time you have been taking Tsabri becomes more important. There are threads related to this that provide risk factors for PML based on titer and length of time taking.

If you need help finding the info, let me know and will get link for you.

[Myoak]

Extended interval dosing of 6 to 8 weeks and standard 4 week dosing relapse rate has nearly identical relapse rates.

Free PubMed article: Extended Interval Dosing of Natalizumab: a Two-Center, 7-Year Experience http://www.ncbi.nlm.nih.gov/pubmed/25342976

It is understandable that some are cautious about extending dose out of concern MS may get worse. But evidence such as this study, holds that MS doesn’t worsen on dose extension; in fact, not at all.

Considering there is less Tysabri in the body during dose extension, and considering that Tysabri suppress the immune system, and considering a suppressed immune system is less able to maintain good health one could easily believe dose extension has health benefits.

It will be interesting to see if/when best practices will incorporate dose extension. My guess is that it will take much time overcome more doses = more profit interests.

Only my opinion.

[pennstater]

Myoak,


Yes, my neuro said no studies to support the interval dosing and I fiction reduction. Then he also said he doesn't expect to see any soon since its not like the pharmaceutical company would sponsor it. As you said all about profit.

[LL60]

I took the study done into my doctor and we went to every 6 weeks. My titer numbers were cut by half by doing this. Hoping they will continue to go down.

[Myoak]

Hi Kathy,

I have a great deal of respect for you (and Penn State, too!). I don't want you to feel I'm targeting you or your doctor as I add to this thread.

MS is such an intricate disease; individuals often respond to medicines and treatment techniques differently. Doctors know their patients better than anyone else.

I find the theory behind dose extension both sound and appealing. So far, the results are very encouraging. But even today, more than a year (I believe) since dose extension was first discussed here at MSWorld it remains preliminary. Changing practice is done cautiously. There are always early adopters who may pay a price if things don't turn out as hoped. It's understandable that many wait until the smoke clears and the way forward becomes clear before making changes.

I'm including another link concerning dose extension. Probably, very few will be able to view the slides in the link (you have to be able to register to view them) but at least the abstract can be read.

If the link doesn't work Google this title: Establishment of a global registry for multiple sclerosis patients on extended dose natalizumab schedules. http://www.multiwebcast.com/ectrims/...IMS2014/63924/

Hopefully, neuros will register all patients on dose extension so data will be collected more quickly and results presented for peer-review. So far, no one on dose extension has gotten PML. Obviously, if this pattern holds, it will be explosively good news for everyone on Tysabri.

Possibly, someone on dose extension will get PML at some point but if the technique reduces PML risk by 50% it would still be worthwhile. More data are required before evidence can be considered conclusive.

As always, there is much to learn. Some MSers may not be able to tolerate dose extension. Perhaps, their MS would become significantly worse. So far, that has not happened. Relapse rate for those on extended dose and standard dose have been running at 13% in both groups (according to the study linked in my previous post). But for individual people MS symptoms could get worse. However, a slight increase in symptoms may be tolerable for many high-risk MSers who remain on Tysabri if PML risk is substantially diminished.

Just my thoughts. Best to all.