Tysabri treatment

[Momto3andNanato2]

Has anyone taking tysabri having any side effects such as jerking of the hands and legs? And extreme weakness of he legs?

[immisceo]

It's important to know that none of the disease modifying drugs work in a way that improves our symptoms. Taking one of them with the mindset that it will improve current symptoms or 'make me feel better' is a misunderstanding of their aim.

They are simply aimed at reducing the number of future relapses and (potentially) reducing the severity of disability. They play the long game—sometimes this is frustratingly hypothetical and abstract feeling.

For symptoms, your doctor can prescribe specific drugs, for pain, fatigue, bladder issues, etc. For acute relapses, a course of steroid infusions may help bring the immediate inflammation down.

If you have structural spinal issues, that may be causing your experience. It could also simply be the MS. The perception that it's a result of the Tysabri though seems to be more a timing thing. But, as they always say, correlation is not causation. If the jerking, etc is new for you, I'd be sure to mention it to your neurologist as well. It pays to have new things like that documented.

[Momto3andNanato2]

Good question. In my mind I keep trying to stay positive and be hopeful but after the treatments I get very discouraged because it was a big let down. December was the worst month so far, maybe the extra stress that goes along with the holidays had something to do with it….idk. I do know that my depression has gotten worse due to the fact that I am feeling no better and the Tysabri is approximately $10,000 per treatment. Thankfully we have good insurance and the drug company offers financial assistance since I can no longer work. I just wish the government was more understanding and give back what I have paid in all the years I was able to work without giving me the run around and  putting us through unnecessary stress. I can relate to the joint pain, the mobility and balance, unfortunately we have had to get another potty seat to fit over our potty because they are so low and its harder to get up and down as well as a walker for stability. My husband donated mine when he thought I was going to get better.. I feel for you and hope things improve for you. please keep me updated on your situation. Thanks and wishing you the best.

[SoCalGirl2007]

I've experienced both. Just had my 8th infusion and keep feeling worse. After the last 2 infusions I had horrible joint pain in my knees lasting 5-6 days. My mobility, balance, etc is worse than 6 months ago. How do you know when to call it quits?

[Momto3andNanato2]

I have had 4 treatments, the jerking was mild before the treatments but has gotten more intense. I can walk around the house and out the driveway and back even though my back is still broken I am awaiting news from spine surgeon as to a date for surgery to repair hardware. My mobility is getting worse because its harder to get up and down and move a lot due to all the pain. I take another treatment this upcoming week. Thanks for sharing.

[bbassel]

I have been on tysabri for about ten months or so. The only side effect I had was extreme tiredness for about a week and feeling a bit on edge. That usually passed in the first day or two. I was only really tired the first two or three times. I haven't had a relapse since starting it and it has been the onlly medicine to work for me. So I am very happy with it.

[SarahL2491]

I suspect the jerking might be your MS, but usually only one side is affected.  You might want to give your neuro a call, it may not be related to either one or he may put you on some Baclofen.

Weakness of the legs?  Are you getting any exercise at all?  Even walking around the house just to be walking?  I finally had to start walking the dog, not far, but enough and that is helping me.

Have you just started Tysabri?  Read the side effects on the pamphlet that they gave you?  If not, go to Tysabri's web side and look for the pfd file that describes side effects.  I'll look on mine tonight, can't do it this morning, no time.  I had my Tysabri on Wednesday and its like a magic infusion for me…….