Tysabri Withdrawals after 3 months?

[rickalex2]

I went off of Tysabri on October 19th, 2012 when I became JCV positive and had been on it for over 4 1/2 years. My odds became 1 out 250. I couldn't wait for the Tysabri to be out of my system so I didn't have to worry about PML.

On January 14th, almost 3 months after stopping Tysabri I had a muscle cramp in my right arm that was like a charlie horse! Only lasted a few seconds but came out of nowhere. I had been feeling amazing. Two days later I had another muscle spasm in right hand. By Jan. 18th, both hands were weak along with my right leg... then my left leg would be weak... it was moving and I was getting muscle cramping and additional weakness daily.

The Neuro ordered a spine MRI to see if the disease was progressing. I just had one in November so we could monitor the disease after going off the Tysabri. My MRI's were UNCHANGED! So what the heck??!! The Neuro didn't think it was the MS and left me wondering what was happening to me! I can't use "contrast dye" because I'm allergic so we couldn't see if the old lesions were lighting up, but he just felt like this wasn't acting like MS, but treated me with a low dose of steroids.

Well I've been freaking out because I feel worse each day. Very tired and weak and sometimes feel like my feet have cramps in them and my arm muscles.. neck.. shoulders.. all over... not so much nerve pain, as muscle pain.. started thinking it was a pulled muscle somewhere. But then I read some of the posts from others who left Tysabri and I think I'm having Withdrawals??? Did anyone have withdrawals without the lesion progression?? And if so, what did you do to make it better? Any help or thoughts are appreciated. I'm really nervous though, so I appreciate honesty but also would appreciate keeping in mind that I'm scared and looking for positive reinforcement on this. I've been very stressed out and this is actually helping knowing this might be it. Its the NOT knowing that scares me.

[dalechilders51]

Rickalex, I hate it that your going through this. A few years ago I missed 2 infusions and the 2nd month I noticed my symptoms returning. I've read that it takes months rather than weeks for this to happen. I started back on Ty and it took a couple of months longer for things to settle down. Are you on any MS med now? It's good your on steroids. My MRI didn't change significantly either. I think as soon as you start another medication this will calm down for you. Hang in
there. Dale

[rickalex2]

Thanks so much for responding to me! I'm set up to start Copaxone in a week or two but now I'm wondering if I can while on steroids..? I was going to just do Copaxone until the BG-12 comes out. That sounds like a great new drug! I hope the steroids start helping soon. I forgot how awful these attacks are. I guess that just means I should be grateful for being Blessed for this long while on Tysabri! I just pray I will get all of my health back again. It sucks to look around at everything I could do a couple weeks ago and now I can't even do the dishes. Thanks again!

[Remy9111]

Rickalex: you say you went off Tysabri when you became JCV +. Does this mean that you had previously tested negative and then turned positive? I've never heard of anyone going from negative to positive although I'm sure it happens. Thanks!

[mgoerke]

I was on copaxone and was able to get solumedrol infusions without issue. I hope this clears up quickly for you.

[rickalex2]

Rickalex: you say you went off Tysabri when you became JCV +. Does this mean that you had previously tested negative and then turned positive? I've never heard of anyone going from negative to positive although I'm sure it happens. Thanks!

The answer is "yes". I was checked in Oct. 2011 and I was NOT JCV positive and it was recommeneded then to get rechecked yearly because you can pick up the antibody at anytime. I went back in Oct. 2012 and I was POSITIVE! Ughh.. (Now it sounds like they will recheck people every 6 months!) Anyway, I had been on Tysabri over 4 years and then turning positive put me at a 1/250 chance risk that I just could not do. And now.. 3 months off the Tysabri I am having a "washout" effect from the treatments and it has caused some old lesions to flare at the moment. Sucks too, because the Tysabri was working like a CHARM! I loved it! Next week I start Copaxone and will do those until the BG12 is released. Hoping it will be soon because I'm not looking forward to the shots but I don't ever want my disease to get out of control. We've come a very long way since I was diagnosed in 1990 and as long as there is something that can keep our disease from progressing, let's do it!!

[Remy9111]

The answer is "yes". I was checked in Oct. 2011 and I was NOT JCV positive and it was recommeneded then to get rechecked yearly because you can pick up the antibody at anytime. I went back in Oct. 2012 and I was POSITIVE! Ughh.. (Now it sounds like they will recheck people every 6 months!) Anyway, I had been on Tysabri over 4 years and then turning positive put me at a 1/250 chance risk that I just could not do. And now.. 3 months off the Tysabri I am having a "washout" effect from the treatments and it has caused some old lesions to flare at the moment. Sucks too, because the Tysabri was working like a CHARM! I loved it! Next week I start Copaxone and will do those until the BG12 is released. Hoping it will be soon because I'm not looking forward to the shots but I don't ever want my disease to get out of control. We've come a very long way since I was diagnosed in 1990 and as long as there is something that can keep our disease from progressing, let's do it!!

Rickalex, that completely SUCKS that you tested positive after testing negative. There is a 2.5% chance one can have a false negative so I suppose it's possible you were always positive. But if you flipped, I wonder how or why? I feel so lucky (knock on wood) that I have tested negative 4 times the past 2 years (every 6 months).

Before the test was available and they had less of a sense of odds, the fear of PML could get overwhelming. I hear ya on not wanting to take the 1 in 250 risk. That would cause too much anxiety for me. PML is a nasty disease which can lead to some pretty severe disabilities. In the beginning when they said 1 in a 1,000 I could handle that. Anyhow, good luck hanging on until the BG-12 comes out. I've heard the studies are super positive and it won't be as good as Tysabri but almost. You might try asking your neuro for a dose of steroids to bridge you between Tysabri and Copaxone. If I had to switch, my neuro said he would do 1 blast of 1,000 mg of methylpred on the 60 day mark. Then you start the new drug on the 90 day mark. It helps reduce the possibility of a flare up as you transition to the new drug. Cheers!

[rickalex2]

Rickalex, that completely SUCKS that you tested positive after testing negative. There is a 2.5% chance one can have a false negative so I suppose it's possible you were always positive. But if you flipped, I wonder how or why? I feel so lucky (knock on wood) that I have tested negative 4 times the past 2 years (every 6 months).

Before the test was available and they had less of a sense of odds, the fear of PML could get overwhelming. I hear ya on not wanting to take the 1 in 250 risk. That would cause too much anxiety for me. PML is a nasty disease which can lead to some pretty severe disabilities. In the beginning when they said 1 in a 1,000 I could handle that. Anyhow, good luck hanging on until the BG-12 comes out. I've heard the studies are super positive and it won't be as good as Tysabri but almost. You might try asking your neuro for a dose of steroids to bridge you between Tysabri and Copaxone. If I had to switch, my neuro said he would do 1 blast of 1,000 mg of methylpred on the 60 day mark. Then you start the new drug on the 90 day mark. It helps reduce the possibility of a flare up as you transition to the new drug. Cheers!

I am doing steroids right now to treat the flare. Not IV, but a tapered dose. Hoping that will help. Your Neuro is right on with doing the steroids at 60 days and starting something new at 90. I was the first of his patients to go off Tysabri and now I'm his benchmark. However, neither of us were worried about a relapse because after I was on Tysabri for 2 years I did a 3 month "vacation" from the Tysabri to build my immunse system back up and I had NO problems at all. So we assumed I was home free when I went off this time. Nope... I will start Copaxone next week though. If necessary, I will end up doing IV Steroids too. Hoping I won't have too. Thanks for all your input!