How long do I hold out?

[Guitar_grrrl]

Hoo Boy!  Where to begin...

I finally got funding for Tysabri, and I get my first infusion next week.

I'm getting stiffer and weaker by the week, but I'm still able to get in some exercise, which helps my mood tremendously.  Monday I came very close to asking about steroids again.  I really want to hold off until I can't handle it anymore.  Then Tuesday was more bearable.  Go figure...

The thing is, I never have recovered from my last flair in November.  I don't know if I'm still dealing with the same flair, or if my current last week of increasing weakness is something new.  In any case, I feel like I'm progressing.  My neuro exam hasn't changed since Nov.  I still can't play my guitar for more than 15-20 minutes.  

So, my question - How long should I hold off with steroids?

Thanks,
Guitar_grrrl
P.S.  I got a "round-robin" gig up in San Francisco.  Three guitarist, all taking turns playing solo guitar.  I only have to prepare 8 tunes, and I get to rest between each tune while the other two play their turns.  Now, that's MY kind of gig!  It's on the 24th of this month.

[Guitar_grrrl]

Debs and Quix,

Thank you both SO much!  I read you loud and clear.  I'm hoping my symptoms cool off.

Today was a good day at work.  I took "paperwork breaks" between patients.  My boss is totally cool about it all.  I took a little nap when I got home.  Thank goodness I sleep 8 - 10 hours a night.  But I'll have a few good days like this, then a couple of really cruddy weeks .  I guess that's just the nature of the beast.

Thanks again,
Guitar_grrrl

[Quixotic1]

Thanks, Debs!

Q

[shermay]

Hi GG,

Congrats. on gettting your funding for Tysabri :)

Tysabri can ONLY be taken as a mono-therapy, so steroids are a no go.

If your first infusion is next week, then I would try and hold off the steroids as long as possible, othersise your Tysabri infusion will have to be delayed.  With the TOUCH program they are really careful.

Way to go with your gig in S.F - hope it goes well for you.

Hugs

Debs xxxx

[Quixotic1]

GG - there are precautions against being on any other immune-suppressants while on Tysabri.  So the question has to asked of your neuro.  Tysabri is only given under the surveillance of the TOUCH program.  One of the requirements is no other immune-suppressing or modulating meds are to be used.  High dose steroids are VERY immune suppressing, but I don't know the specific rules.

So, your neuro has to check this out and decide.  I suspect you cannot have them within a few weeks of the Tysabri infusion.

I am not 100% sure of all this, but it should be checked out.

Quix