cyclo and now rituximab

[Sangye]

My wegeners specialist Dr. Langford told me that people who have wegners with sinus involvement have a harder time getting off prednisone. The sinus like prednisone.

Dr Seo at JHU has told me the same thing. He said it's hard for them to get below 10mg.

[elephant]

I am down to 2.5 mg of prednisone, and that is good for me, but I won't lie...My left nose is running on/off. I know if I get stuffy or sinus pain and everything has been rule out I will have to up my prednisone. But I don't have shortness of breath or hearing loss or joint pain. If those symptoms come back then I make my call.

[Sangye]

That is awesome, Elephant. I wonder if you can just pulse a higher dose occasionally instead of increasing. Not higher than 10 mg.

[kulharv]

Elephant,

With my new problems of numbness, tingling and 'rash' appearing on my foot, my rheumy has increased my prednisone up to 60mg and I was also taking gabapentin for the neuropathy and that has been increased from 200 mg to 2400 mg per day. It seems to be working as the pain is reduced by the numbness is still there.

I have noticed the my sinus has been cleared up but don't know if it is due to the prednisone or the RTX.

Other than my new problem in the foot, I'm am feeling better.

The results of the bone scan will be given in 2 weeks.

Take care!

[elephant]

Having Wegeners is a wait and see approach. We are always waiting for a test or of a symptom is going to get better or worse..then waiting on a doctor call ...then the doctor prescribes a medicine and we wait to see if that works..it goes on and on! Thanks guys for answering!