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Avatar universal

Relapse symptoms vs Tysabri side effects?

Hey All! New here to posting, but have been reading quite a bit! Great info!

My question is, I had a relapse over the summer, major numbness/weakness on my right side, pain (allydonia) all over, my arm felt cold when it wasn't, major sensory issues. This eventually resolved with the help of Soulmedrol and time. This was my 3rd relapse in a year and a half, so my doc started me on Tysabri in the fall. I have had 5 infusions so far. I didn't think I had any major side effects from it besides the fatigue the day of and day after infusion.

Recently, since Christmas-wish, my old relapse symptoms have come back with a vengeance, but have spread. So now instead of only my right side being numb, it's my left leg too, parts of my face and scalp, my ears are numb. I called my doc and I have had a brain MRI and I am getting the spine MRI Monday. Shockingly the brain MRI was clear, not what I expected at all. After reading many posts, I have realized that the MRI is not the be all end all of relapse diagnosing, so I will not put all my eggs in this basket, I just thought it would be a clear cut answer (spine MRI is still TBD, btw). Why would my symptoms return like this without a relapse?

I have also noticed over the past week or so (starting a few days after my last infusion) little red bumps on my face and hands that itch. After reading many posts I'm realizing this may be a side effect of Tysabri, which has led me to wonder is everything going on related to Tysabri? Has anyone had an experience where Tysabri triggered old symptoms to return, or had side effects similar to this? I looked up the side effects and it sounds sort of similar, but it's just odd that what I am feeling is exactly the same as my previous relapse, just way worse.

Is this a relapse? Side effects? Something I'm stuck with now?

Any thoughts would be helpful!

Looking forward to reading more!

Alissa
5 Responses
Avatar universal
Oh, and how could I forget (thank you brain fog) the INTENSE increased sensitivity and pain. If it isn't numb or sensitive it down right hurts!
Avatar universal
Hi and welcome.

I can't say anything about Tysabri side effects as I've never been on Ty, but quite a lot of others here have been, and some of these will be able to comment on this through their experiences. I can say, though, that the bumps/rash are very likely to be a reaction to something or other, and in themselves are not an MS symptom.

Now as to why you're having more MS problems, I'd say it's because this is a genuine relapse. You don't need new lesions for that--old ones can do the job nicely :-(  The definition of relapse, flare, attack, exacerbation, etc. is the appearance of new symptoms or the return of old ones, lasting a minimum of 24 hours. You have this in spades. Old ones can get more intense and spread as well, and this is you too.

Tysabri would not be triggering the relapse. I'd say you're having it despite the Tysabri, just as others can have relapses while taking one of the other MS treatment drugs. I don't know how long Tysabri takes to 'work,' so I hope someone else comments here, but with the more first-line drugs, doctors generally give it a good 6 months or more before deciding whether it is effective.

In any case I think you should contact your neuro asap. Possibly he or she will prescribe another course of IV solumedrol now, while considering what steps to take for the future.

Good luck.

ess
Avatar universal
Thanks! I could have recited the definition of a relapse to anyone, 'new symptoms or worsening of old ones' but I have always thought of relapses in the context of MRI results too. I have never really thought of them outside of MRI results. Reading all these posts have helped me with that.

I'll talk to my neuro when the cervical MRI results come back and challenge him around relapse without new lesions (if in fact the cervical is clear too). I really feel like something is going on, and in the past I have been right every other time.

Thanks for the validation!
667078 tn?1316000935
There are two things in MS inflammation and nerve damage. With inflammation which can be weeks, months, or sometimes longer when the inflammation is increased so are symptoms. Steroids are good at bringing down inflammation. Steroids do nothing to stop the progression of MS. When you have inflammation it is called a relapse. When the inflammation dies down so do symptoms.

The second thing is nerve damage which is progression. With nerve damage the symptoms are permanent. Doctors can't tell which is which except with time.

For example I have had double vision for 50 years so that is nerve damage. Sometimes my legs do not work for a month or more then they go back that is inflammation.

Most damage in MS is gray matter which does not show up on MRIs. MRIs are not worthless they back up what the doctor suspects. You can have symptoms to change on the MRI.

Alex
Avatar universal
Do your leg symptoms come and go? Are they the same every time? That is what I am experiencing right now, but what was showing up on the MRI before (which may or may not have been the reason for the symptoms I suppose) isn't showing up now, that's what is confusing to me.

I guess that is what is worrisome to me at this point too, is this a relapse or progression. Since the MRI didn't show anything, my automatic thought was to jump to progression.
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