Why so many JCV tests Grammie?
I do have my tonsils...

and my appetite is just getting out of control!!!!!!!!!!!!

Congrats Linda on the 3rd negative JCV test! YEAH! It's so strange that you got a false positive, don't you think? Did the neuro have any explanation?

I've had 3 negative tests too. I think I'm due for the next one in Oct. My neuro was confident that doing it every 6 months would still be safe even if you happened to test positive on the most recent one you got and subsequently had to stop. I can't remember why but it had something to do with how long Tysabri stays in your body and how PML develops.

So I miscalculated my Tysabri infusion span and I think the 8 week mark was yesterday not last week!!!! So that means I still have a window of 2 weeks left (10 weeks was the limit my neuro said). I saw my doctors yesterday and they were amazed at how fast the wound is healing. The infectious disease doctor recommended 2 more weeks of IV antibiotics to add to the 2 weeks I have already had. So I am feeling more optimistic overall!

So glad to hear that Nat..

Update on the foot infection and Tysabri! This Friday I will have been on IV antibiotics for 3 weeks. This Friday will be 9 weeks since my last Tysabri infusion. Most likely I have to be on IV antibiotics for another 3 weeks. I was so certain I was a done deal with Tysabri because you just can't take the drug when you have an infection. After waiting anxiously for 36 hours from my neurologist, he and my infectious disease doctor came up with a plan.

If I stay on antibiotics for 3 more weeks that would put me at the 12 week mark for no Tysabri (very bad because of possible rebound effect). The solution is to get 1 large dose of IV steroids (500 mg) ASAP. The neurologist said that not only would this buy me 4 more weeks but the wound is far enough healed that the steroids wouldn't affect the larger healing process (can't remember the details why since he called when I was in a dead sleep). What this means is after the antibiotics are done in 3 weeks I would immediately get a Tysabri infusion the next day. Then I would be back on the regular Tysabri track.

Hallelujah!!!!!!!! I don't have to give up Tysabri!!! If for some reason the infection comes back (small chance) I would just transition to BG-12 which is about to get FDA approval and is not an immunosuppressant. [big sigh of relief....finally some good luck!]

PS: I haven't had the 'roids in 5 years. I'm not sure I can even remember what the side effects are except for manic energy and lots of weeping.

offinthedistance, when you are in the strata trial for the jcv test they take your blood approx every 12 months and my Dr ordered one test outside of the trial.

Natalie, first let me say I am very happy for you that you have a plan of action and that you are healing well What a miserable ordeal When I have had pedicures I ask about their procedures - now I will be even more vigilante

Dr Vollmer and Dr Corboy of the RMmsC have told me there is a 1-3%margin of error in the jcv test. So, when I had one positive and one negative Dr Corboy considered me positive, when it became 1 to 2 he was more into considering me negative-now ...

Linda

Hi,
I'm Jenna and I am brand new to this forum! I just had my 10th infusion today. Got results of my newest MRI's and everything is stable YAY!
Here is my problem, I just finished up a 2nd round of doxycyline for and infection of the uterus (Endometritis) This is my third month having problems with this and my OBGYN says there is no normal cause for this infection and my Neuro wants to pull me off Tysabri if I have this infection again this month. I'm scared cause I feel like Tysabri has made my MS stable, but I also don't want to have some weird chronic infection that no one can explain.... and besides it hurts
Has anyone had something similar, or any advice?
Thanks,
Jenna

Hi Jenna, I started getting a UTI after every infusion (infusion #14-17 which involved antibiotics all the time. We decided to switch to every 8 weeks. That was 2 1/2 years ago and I have not had a relapse even on the 8 week plan. You might ask your neuro if you can try this before being yanked off. Of if that makes you nervous ask for every 6 weeks. Be proactive. Ask for the 6 or 8 week plan and ask the neuro to give you 2-3 months to try it. You might find the infections stop and the drug still helps. Good luck!

I'm no doubt repeating the question but I can't trawl through so many pages so I'll ask... does anyone have any home fixes for the borderline UTI/thrush tingle feeling that no doubt comes under the V'itis umbrella of side effects?
Feel like I'm on FIRE!! But swabs and dips are negative.

I've heard about drinking cranberry juice ?? My ex had a kidney problem, he ate cherries/drank cran-cherry juice.

I was supposed to get Tysabri next Friday. As you recall I had the bad foot infection from the pedicure that delayed Tysabri by months. They wanted me off antibiotics for at least 2 weeks (which was yesterday) to see if the infection came back before getting Tysabri. Bad news. In the past 48 hours it has come raging back. I sent pictures to the doctor today and he said it looked bad. He said tomorrow morning (Sun) I have to be readmitted to the hospital. They need to drain the new abscess, culture for bacteria (since nothing grew after 6 weeks on the last botched one), and possibly do a bone biopsy if it appears the infection is in the bone. Likely it's more antibiotics. I'm sure I am off Tysabri for a long time--not sure if I'll ever be able to go back on. . I guess the doctors treating this will confer with my neurologist. So sad..........