Rituxan Protocols and Successess or Failures

[Psyborg]

lightwarrior, sorry you are feeling poorly. I hope things turn around for you soon.

[Psyborg]

Catching up on this thread.... Lightwarrior, how are you doing now?

Bob, please let your doctor know. The end of the month might be too far away. You might just need to bump up a dosage of something to stop a flare.

Have a call into the Doctor today. My hips started hurting in the mornings where they have pressure on the bed at night...very reminiscent of the first bout. I'm almost exactly 6 months out from the last infusion.

If I'm flaring this is starting to get really frustrating. Seems to happen every time I start to feel "normal" again. I suspect that is because its the point my immune system starts to replenish. Didn't even manage to hit 5 mg of prednisone this time around.

[pberggren1]

I sure hope you're not flaring Bob.

[Psyborg]

Me too I'm not feeling horrendously bad or anything, but the hips hurting is just weird since I haven't done anything to aggravate them.

[carriej22]

Bob, my hips hurt too about a month or two ago.. Time seems to run together.

The were really, really bugging me for the course of a few weeks. I was losing sleep because I couldn't sleep as laying on one side too long was really uncomfortable. I seen my specialist in that time and he suggested it may be because I was weaning off pred.

He slowed my pred wean down a bit and the pain diminished and I don't have the pain now. Not suggesting this is your problem, but I was panicking too. I was like "Oh god, oh god it's coming back and I'm going to die" (I'm a bit of a drama queen).

[Psyborg]

I'm hoping that is right. It's been a bit over a weak since the last drop in pred. That said, I do feel a bit better today so maybe that was the problem

[Psyborg]

Well things cleared up. I'm still having a few weird issues here and there, but i think it is actually the pred reductions causing the issues. My doctor called me back on Sunday, but the pain I had been having had subsided. I'll bring up the weird stuff when I'm up there, but I can go slower on the Prednisone if it means no flares

[Pete]

Hope you continue to feel OK and can eventually get off pred.

[drz]

Well things cleared up. I'm still having a few weird issues here and there, but i think it is actually the pred reductions causing the issues. My doctor called me back on Sunday, but the pain I had been having had subsided. I'll bring up the weird stuff when I'm up there, but I can go slower on the Prednisone if it means no flares

I have some minor transitory symptoms when tapering down on the pred but it usually went away in a few days. Then I would wait a few more days and try another small taper. From 8 to 5mg I went down only 1/4 mg about every ten -twelve days or so.

[Psyborg]

I think the worst thing about this is not knowing what is the withdrawl symptoms versus the symptoms of the disease...doesn't help that our symptoms can be so wide ranging