tysabri jcv

My dco says that a postive serum test for JCV is not, in and of itself, a big concern for Tysabri users. More important is whether or not there are JCV antibidies present in the CSF. This indcates that there is current JCV activity. So if the CSF comes pack positive we have to talk about switching off of Tysabri. If the CSF comes back negative I'm OK for a while. We talked about what happens when I hit 24 infusions.

The risk associated with being JCV + and getting Tysabri is PML. PML is a rather nasty little brain infection. In addition to monitoring my blood for JCV, my doc also used MRI to watch for signs of PML. My MS dod not advance, nor did I have any relapses while on Tysabri. I stopped for 2 reasons. The first was that after initially being JCV -, I converted to JCV +. At the same time my doc was able to determine that Tysabri was no loger working.

I was offered Gilenya when I had problems with Tysabri (which turned out to be something other than Tysabri that caused it) and after reading the cardiac warnings and other side effects, chose not to take it. Tysabri has a wonderful financial support program. They fully donated my first 4 months of Tysabri until I could get an insurance program in place. Tysabri is considered an "outpatient" procedure and under my insurance, is paid for now at 100%.

I've been tested twice in the last year, and they were both negative. Since you can acquire JCV at any time, I opt to have my status tested once a year since I'm on Tysabri. There is also a Tysabri antibody titre available, now. I plan on doing that once a year, too, although development of Tysabri antibodies is relatively rare.

At 18 Months I converted to JCV +, and we discussed switching from Tysabri to Tecfidera. subsequent LP showed the presence of this biomarker. At that point my JCV status was moot. The disease activity, shown through this new biomarker, indicated that Tysabri had stopped working. If Tysabri wasn't working it was unlikely that Tecfidera would. We changed course and I will start Rituxan a week from Friday.

I started on Tysabri. After 20 infusions I converted to JCV +. It was also determined at that time that Tysabri was no longer working. I switched to rituximab.

Food for thought for those on, or conteplating, Tysabri. Blood antibody testing for JCV may not be enough. http://www.medpagetoday.com/Neurology/MultipleSclerosis/39649?

t know numbers yet, as nurse wants Neuro to tell me) There was apparently a note on my file that if it was positive that I was not to go on Tysabri. We never discussed this with her, and if the numbers are high of course I would not try it. , but, I know of people who are positive and low numbers and have done very well on Tysabri. I just want o give it a shot. I have to wait now till Wed. when my neuro is in and the nurse will chat with her as to what to do.

My question is the impression of my mri stated T1 and T2 disease burden is at least moderate ( written for head and cervical MRI). Also JCV negative this whole time can I stay on Tysabri indefintely as long as I am negative?

Make sure that you ask about how they will monitor you JCV status in order to manage your PML risk. After infusion # 18 I converted to JCV +, so I stopped using Tysabri.

I will start tecfidera in 3 months I hope I dont have the rebound effect I have heard about after stopping tysabri. Tysabri has really changed the way I feel was using a walker now nothing and I do Zumba too. I hope I stay like this but having doubts. anyone using tecfidera? How was your experience.?

Anyone know anything about Fetuin-A, Osteopontin & Total Cell Count #'s? I just got a copy of last month's LP results. These 3 were the only results, other than the JCV results. The CSF JCV was negative, but all of the others were significantly out of range.... Bueller? Bueller?

Recently diagnosed with MS (November) and they are starting me with the drug Tysabri. Trying to find out what to expect and if it is helping others with their symptoms? All new to this, really have no idea what I need to know or ask? Just looking for someone with some insight on what I will experience.

There has been some recent discussion about LP's as part of JCV/PML detection protocol. I am having a blood test, brain MRI and an LP every 6 months as part of my Tysabri treatment. This article from the Journal of Neurology discusses this protocol. http://www.msrcny.org/sites/default/files/articles/JCVpaper.

So to anyone who is THINKING about Tysabri, this should be your last resource of treatments to use. Also, PLEASE get tested for JCV BEFORE yiou start on Tysabri, and THEN make your decision!!

Well I saw my neuro today and after a lengthy discussion with both him and the nurse, the subject of UTI did not come up! There was so much else to cover, I completely forgot to ask and they apparently did too. Argh. Why didn't I write it down? No 12 year old resident this time lol so it was nice to get to know my neuro better. We had a long discussion about changing treatment.

I was on tysabri for 9 months till my liver decided it didnt like it anymore but I loved the drug went from using a cane to nothing. I just started gilenya yesterday so jury still out on that. Its been 7 months since being off therapy and feel like crap the fatigue is overwhelming and my balance is bad dragging foot again so should be using cane again just not mentally ready for it. if your jc neg I would go for the tysabri as long as insurance covers it 1 hr a month and done so easy.

I tested JCV- and immediately started Tysabri. After 20 months I converted to JCV + and it was simultaneously determined that Tysabri was no longer working. I switched to Rituxan and after two rounds of infusions I am alive and well. There are risks associated with all meds. There is risk associated with walking out the door in the morning. Only you can decide if you are willing to accept thise risks. I choose to accept them.

m still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control. but Tecfidera should be able to keep it under control.

I'm looking forward to discussing Tecfidera with my doc later this month. My last JCV antibody test was positive so we're going to be looking for alternatives to Tysabri, my current DMD.

Most know my unhappy experiences with Tysabri recently but DH drug me home from the ER early this morning. Had been nauseous and upchucking since Monday after my August Ty infusion 10 days ago. Nice doc, ran tons of labs (only WBC was elevated) and x-rays and wonderful meds and hydration fluids. He and I both feel was Tysabri side effect.........now the interesting part is that I seriously burned my esophagus and now have days of liquids and meds while it heals.

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