Hi all Currently reducing my doses of Prednisone and still on Cyclophoshamide. My Specialist is intending on switching me over to Imuran eventually. Has anyone had success with this drug?

Hi Lildreamer, Recently they switched me from cell cept to imuran. I have to be on a reduced level because my enzymes are low, but it is working and my blood levels had improved slightly. I find it much easier to take than cell cept because the pills are normal sized not huge. So far I seem to be doing well on it. I do not have muscle involvement but interstitial lung disease. My capacity has improved to 59% with my diffusion rate around 30%. Other than oxygen 24/7, I am doing much better than when diagnosed in February.

Cheers. Anyone with muscle involvement as well had success with this drug?

yes

Yes again. I was put on 50mg Prednisone and 50mg Immuran which will go up to 150mg. Generally speaking its been going well but there are days when my muscles are really weak and more recently my joints are arthritic but I think that's when I do too much. I take a gastrointestinal med as well to stop bleeding. Despite all that Im happy with it.

Unfortunately imuran wasn't successful for me, it was the first immunosuppressant I tried after my initial cyclophosphamide infusions. As I started to reduce the pred after 6 months of taking the imuran, my CK's rose and my symptoms flared, so the imuran couldn't hold the disease at bay. I was then switched to cellcept which has kept my Ck's in normal range, but still have symptoms rumbling away in the background. Good luck with the switch, I hope you have success with it.

An abbreviated history of my meds over the last five years: Started on high dose prednisone, then Imuran was added. Lungs improved greatly. Tapered down and off pred, did ok a few months until I got a stomach virus, then immune system flared and lungs tanked. Back to high dose pred, stopped Imuran and added cellcept. Seemed to stabilize for a while but then myositis developed when reducing prednisone so we added IVIG to the mix. Helped with muscles but after four months started to have big allergic reactions to IVIG and docs were unwilling to risk more. Switched off cellcept to tacrolimus & prednisone, continued to decline. Then back to pred & cellcept and added rituxan (which has stabilized both lungs and muscles.). For the last 17 months have been tapering down prednisone (trying to get to 10 mg), while still on cellcept and doing rituxan every six months. It is clear my body responds mainly to prednisone. Rituxan has been a godsend. My Rheum thinks the cellcept isn't really doing anything but says they all feel better with me on it because it tends to be the protocol to have pts on something other than pred. And all my docs want the prednisone as low as possible but think I'll always need 5 - 10 mg of it. I'd like to try going off the cellcept once I get to 10 mg of pred but at the same time, not sure I should mess with the current triple combo if things are holding steady. It's a constant dance of tinkering!

Thanks for that. I don't know if I should tell my specialist that I want to go straight on the CEllcept or trust his approach and give the Imuran a try. Usually a risk taker but in this case....

Ask your specialist why they're recommending one over the other. Do folks with similar disease profiles to yours tend to respond better to a certain course? (Of course there may be little data to compare. heck, sometimes we are the only data!). My case has been called "refractory" or unresponsive to treatment. I have the OJ subtype, started with acute severe lung involvement and didn't have an elevated CK, muscle weakness or joint issues until three years after initial diagnosis. One thing I have learned is that we all respond so differently. Trust yourself and if you feel a treatment course isn't working, change it. If you're not already, keep a notebook with your symptoms, medication levels, side effects, etc. Over time it will be a good tool for customizing your treatment and assessing risks. You're already doing an amazing job of sorting through the resources and quickly scaling the steep learning curve that comes with this diagnosis. This is how I know you will survive this illness.

Hi everyone Tomorrow there is a live discussion on the Myositis association web site all about Rituxan. It stats at 3:00 ET. The doctor will be answering questions submitted to the web site. I thought you guys might be interested in what's going to be discussed. If you have questions log into www.myositis.org to get more details. Best to you all. Csarv

Hi everyone, Changing from Imuran to Cyclophosphamide infusion tomorrow. What were your experience with it and what were your side effects, if any, to the cyclophosphamide?

I was on cyclophosphamide for a while and found that I had improved dramatically, but it is not a long term drug. I never had the infusion though. Hope it works out for you. How did the Imuran go?

I started on cellcept and it worked well until I reacted to the medicine. My enzymes were low so they put me on a reduced level of imuran and my diffusion rate dropped significantly. So we're trying the cyclophosphamide p. I could have had either pills or infusions, but my problems when it comes to reacting to meds are often in my stomach due to other issues so I opted for the infusion. What dosage did you start on?

From what I remember I was taking 100mg of cyclophoshamide a day 2 tablets. Good stuff that was, most effective to date.