Question:

Love of my life (LL) has recently developed a new symptom after a year on Tysabri - that being intermittent severe body-wide joint pain. Yesterday she was in agony - today she's just fine.

Have any of you had similar (MS) symptom or (maybe Tysabri) side effect? Thanks in advance for any feedback you can provide.

I don't recall hearing of anybody else with that symptom from Tysabri. Since it's gone, could it possibly be a touch of the flu or something else like that?

I hope it was a one-time occurrence for your LL.

IF it keeps up . . .

I suddenly developed a very rare (and serious) "allergy" to Tetracycline, and that is exactly what it did to me.

If it goes away, it was probably coincidence.

Cherie

I have what I used to call joint pain. I found out that it was spasticity in my case. It is the muscles spazzing and pulling on the joints that they are joined to. It's not always the joints and that is what confused me. I get it regularly in my wrist joints, knee joints, foot joints, toe joints and sometimes in my hip joints! It all depends on what muscle group is spazzing. I swear sometimes I feel like I have been hit by a car!

I take baclofen and tizanidine for spasticity now and it controls it (when I remember to take it!) and it relieves it when I DO forget.

Maybe your LL could look into spasticity control and see if it helps.

Let us know how it goes and tell her we're pulling for her! ( only not on her joints! )

RW, good one !

Thanks to all for the feedback. LL has been prescribed valium for spasticity - mostly muscle cramping. The joint pain is intermittent. She has good days without any joint pain at all - then she might have a week of severe joint pain without relief.

The valium doesn't seem to have any effect on relieving the joint pain although it does help with occasional muscle spasms. I suspect that the joint pain is a MS systemic symptom and not a side effect of Tysabri since this symptom manifests itself regardless of her medication regime with valium and seems to have no direct correlation with Tysabri infusions.

RW, have you ever used valium for spasticity? Are baclofen and tizanidine comparatively more effective? This joint pain issue is really impacting our quality of life. As you described it, LL also has days where she feels like she has been hit by a car and can't get out of bed.

Appreciate your feedback.

JJ

I haven't used Valium or any other benzodiazepines for any thing. I try to stay away from meds as a whole, but the spasticity was really getting to me and interfering with daily life so I took the advice of my doctor ( and one of our valued posters-Thank You MBSews!) and decided to just try the tizanidine before I went to sleep. I was having spasms that kept me awake at night. The tizanidine relieved them and continues to work as well now as it did the day I started it.

I held off on the baclofen for as long as I could, but when the pain started interfering with my daily life, I started on that. I have gone from 10mg 3xday to 20 mg 3xday. There are days when I am ok and I don't take the full day's dose. There are times when I do it all. So far it is relieving the spasms for me and my doctor is fine with me taking it as needed.

It doesn't work for everyone. I am sure others will chime in with what has worked for them. The whole point is to accept that sometimes meds DO help and to work with your doc to find one that works for you. Medication can make a difference as to whether you walk through your day like this or like this ...

Edit to add that joint pain is a side effect of Tysabri ( contained in your drug leaflet included with vial of Tysabri in box-Ask for the box and the vial!)

Hope this helps!

Sorry to have not posted in awhile. I had posted about the downhill slide that I thought might be connected to Tysabri - but it wasn't. It was a major excerabation. My neuro admitted me into the hospital, ran three MRIs and saw a lot of progression and enhanced lesions. He put me on IV solumedrol for 5 days.

After much investigation, he did tell me that he didn't want to change the Tysabri schedule. I was released from the hospital on September 19 and had my second Tysabri infusion 9/26.

I am getting my strength back following the steroids and I had no issues with the Tysabri infusion. I did not pre-medicate this time as the Tysabri nurse chastised me last time (even though my neuro wanted me to).

I am looking forward to great results from Tysabri. Thanks for all who gave me feedback!

Glad to hear you're on the comeback trail! Please let us know how it goes for you!

I get my infusion tomorrow, I'll update then. BTW, I'm going to let them know that I want it every four weeks from now on, even if a different doctor needs to check in on me.

My appt is at 11:15 am, and I can hardly wait! I even packed us a lunch to get us through until suppertime.

JJLL,

Since this is intermittent (and perhaps a side-effect of Tysabri or some other med), I'd suggest that LL keeps track of the meds used to see if this the joint pain follows a pattern.

I'm not sure why my doc and pharmacy think joint pain from an allergy to meds is serious business, but I am not even permitted to take Tetracycline any more for that reason.

If you find there is a pattern, i.e. 2nd week after infusion, or day after taking some other med (each time), then I would definitely bring this up with LL's doc AND neuro.

Cherie