80 treatments of tysabri...now jc pos

[kim_aikey]

I just had my 80th tysabri IV. No flairs in that time. Now I am JC pos. My doctor wants me to switch to tecfidera and I am at a loss of what to do. I am a 3 yr old mom of 3. (9-18) this decision doesn't only affect me.
I have read awful things about Tecfidera and I know how I have felt on Tysabri. WONDERFUL. But PML risk is higher since I have had so many treatments. I called my doctor to ask for the levels and while trying to get them the lab said they lost my blood. So I had it drawn again yesterday and now am awaiting the results. So much to consider and I am being overwhelmed the more I read.

Can anyone help with your experience or anything that may help me?

[lindaincolorado]

Good morning Kim,
I became + at around my 89th infusion; yesterday I had #91 The titer # is low .28, .4 is actually considered positive. My Dr, RMmsC in CO is fine with me staying on but, is giving me a jcv test every 3 months. I don't know at what # he (and or I) will want me to stop I hope it doesn't come to this unless there is something better for me to do! Tysabri still has the efficacy of any of the ms meds!!

Best wishes and good luck

[KatieAgain]

80 treatments! Goodness...Yahoo! Where you been hanging out Darling? Not MSWorld.

I am only going on treatment #6...and I am hoping to make it as far as I can on the drug. But if, or I should say when, I have to go off TY, Tecfidera will be my next drug of choice. In fact there is a box of it in my Medicine Cabinet.

There are some wise people here that will help you out.

[jiljb]

JC + and on TY

Hi Kim, I hope the lab gets your results for your titre soon, as it would be so much harder for you to make a decision without knowing your number.

I have had 58 infusions and I am JC+. I went off of Ty when I first found out that I was JC+, at my doctor's suggestion ( not insistence - he gave me the choice). I was off of TY for 3 months before starting Tec. Tec didn't work out for me so after about 2 months I went off of it and looked for other options. At this time, the test to check for titre numbers was suggested by my dr. By the time I had the blood draw, received the number (.55), got insurance to approve restarting Ty, and waited for my infusion nurse to return from vacation, it ended up being another month off of Ty.

I had not had any relapses during the 4 1/2 years on TY, but now with the (what ended up being 6 months) time off of Ty I ended up having a relapse which I am still trying to recover from (I have had 5 infusions since restarting).

I gave you this info because there doesn't seem to be too many people who have gone off of TY and then back on, although that may be changing. I really hope you are able to restart TY, but if you decide not to, that you find another med that will work for you.

Oh, I should mention that although I have not fully recovered from this latest flare, I do have more energy and feel that I am headed in a better direction. I just didn't feel well while on Tec.!!

Keep us posted on your decision! ~ Jil

[poppydarling]

I had around 8 Tysabri infusions before I had to stop due to allergic reaction. I felt pretty darn good on it, too. One thing I will say: definitely don't come off it cold turkey. Read the literature and their recommendations for tapering--it's there but it should be MUCH more prominent, imo. Within 4 months of coming off it cold turkey, I had the mother of all flare ups and three years later, I have never recovered. I reported this to the FDA, and I'm doing more research and apparently I'm not alone.