Just another Update:

The UTI is almost gone.

I am dealing with another issue associated with a reduction in the power of the immune system....a minor fungal infection.

The last time I had this issue it was in the middle of my Tysabri process, and before that it was thirty years ago when I played sports.

The Klotramin is helping as it always had with this issue.

Fungal infections are a well-known side-effect of having a reduced immune system.

Time will tell when things can proceed as planned with Tysabri.

-Vic

I had so many infections last year, Vic, until I realized the underlying problem was an ongoing "inflammed" (translation: infected) root under my cap. As soon as I had that tooth removed, all the other infections stopped.

My advice is take stock on every part of your body that MIGHT have something going on that you may be ignoring.

Hope it all works out well, and you can continue with your success.

Cherie

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

Hi Wiz, this is alias lindaincolorado Twice I have gone 5 weeks and it was rough. The fourth week I start to run down, so the 5th was not good. My daughter told me to NEVER do this again
Good luck,
Linda

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! )

Hi Linda!

It will be five weeks, two days on Monday. Last night DH thought I was having PMS, though I'm past that stage in life. I need my Tysabri fix, Monday will be infusion #18 for me... (right RW? )

Boy, if they kept moving me back like that I would be doing some growling to both my doc and the infusion center! You should point out that Tysabri is designed to be infused every 28 days...repeatedly... if it's your infusion place that is doing this and not you or your doctor due to something going on with YOU! It's a different story if it is your choice. They are making a LOT of money off of you/your insurance. It's NOT ok to be scheduled at the convenience of the infusion center!

I have never been moved back even a day since the first infusion when they didn't get the vial in time. I've been moved up a day or two for both my convenience or for theirs when the infusion center and the doc and I were in agreement, but never back. I also schedule my appointments at the same time/same day every month for 6-7 months at a time.

Is it #18??? Congrats to you, partner!

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