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Pmarsh
06-08-2011, 01:24 AM
I started off my treatment with 6 rounds of Cyclophosphamide and the usual prednisone and other drugs. I had a short cross over when I switched to Imuran in April. My Dr. started me on 75mg of Imuran thinking he would bring the dose up to 100mg eventually. By early May I ended up having a mild flare up (joint discomfort, some sinus discharge, and some new granuloma/blood in the lungs). So I was told 3 more months of Cyclo and to up the pred again (from 7.5 to 50mg) I also did 3 solumedrol doses.

My question to everyone is what next? My Dr has to decide if it was an Imuran failure or if the dose was too low. Then what other drug could I use. I obviously want a drug with the fewest side effects and potential for long term damage. I've heard of a few other choices (methotextrate, rituxan). Any other suggestions? I want to go to my Dr in a month armed with some knowledge and an opinion.

Thanks.

drz
06-08-2011, 02:44 AM
You sound like you have a good grasp of the alternatives and maybe's. This is where your doctors experience and intuition come into play. Like Yogi Berra said, it is hard to predict things, especially the future! Only trial and error will determine what drugs works best for you. I am on 200 mg azathioprine (Imuran) so a higher dosage might be a good option to try. I think dosage sort of relates to weight with 1 mg per pound being a good guide for max dosage. I was on 150 and also had a flare that seemed set off by infections. My doctor wants to save the Rituxan for a serious flare. All drugs have side effects but choice might depend upon how good are your kidneys and liver since these drugs seem to load one or the other so if one of those organs is damaged it will influence their options.


I started off my treatment with 6 rounds of Cyclophosphamide and the usual prednisone and other drugs. I had a short cross over when I switched to Imuran in April. My Dr. started me on 75mg of Imuran thinking he would bring the dose up to 100mg eventually. By early May I ended up having a mild flare up (joint discomfort, some sinus discharge, and some new granuloma/blood in the lungs). So I was told 3 more months of Cyclo and to up the pred again (from 7.5 to 50mg) I also did 3 solumedrol doses.

My question to everyone is what next? My Dr has to decide if it was an Imuran failure or if the dose was too low. Then what other drug could I use. I obviously want a drug with the fewest side effects and potential for long term damage. I've heard of a few other choices (methotextrate, rituxan). Any other suggestions? I want to go to my Dr in a month armed with some knowledge and an opinion.

Thanks.

Sangye
06-08-2011, 12:22 PM
Peter, I forget-- is your doctor a Wegs specialist?

Doing an additional 3 months of ctx seems odd to me. If it were going to work it seems that it had a good chance in 6 months. Also, I can see increasing your pred again (not necessarily up to 50 mg though) but doing pulse steroids on top of it seems like overkill. Were your lungs massively hemorrhaging? There are a lot of factors involved that could justify it, but personally if that wasn't a Wegs specialist's treatment plan I would get one involved before moving forward.