until your symptoms are gone and then you start tapering them You try to get off the steroids first as they are the most dangerous to our system. We take the suppressants at a much lower dose than they use for chemo so our side effects are less too.

Lots of info at TMA The Myositis Association. It is free, you just register. Much info there abuot all the treatments
S

I was on Prednisone for 5 years. I tapered off last December. I am still on Methotrexate. I've been on that around 4 years. I was told I will never get off.

I believe at our low doses, the chances of cancer are slim. I actually had cancer before Myositis so I've talked a lot with both my Neurologist and my Oncologist about my Myositis and the drugs I take.

My Neurologist feels it is a necessary evil to stay on these drugs as long as we have symptoms. She was shocked I was able to taper off Prednisone. I gave up some strength, endurance, and balance to get off. She isn't worried at all about the Methotrexate and neither is my Oncologist. Actually, Methotrexate is a cancer drug and used to treat cancer in significantly higher doses than we take....like 1000s of times stronger than we take.

I would try not to worry about it. The alternatives are grim as well. Speak with your doctor about your medications and agree upon a long term plan of action. You will probably feel better.

I have been taking Azathioprine andrednisone for nearly a year now. I have tapered from 60 mgs daily Prednisone to 6mgs daily and still tapering, hopefully will be off by Christmas. My Rheumatologist hates Prednisone and see it as a necessary evil. It can do far more damage long term than the small dose of Azathioprine 100mgs daily. He seems to think I may well be on this med longer term. I have JO-1 antibody which needs to be kept suppressed. I trust my doctor completely. He has brought me this far from being very sick indeed to almost back to normal life. Ask questions but don't worry, you will get there, it just takes time sometimes to find the right mix of Meds. I was fortunate that the first line Meds were for me. I cannot think about the 'what ifs' the alternative to not taking these Meds is too dreadful to contemplate. Autumm

I also meant to add that the monthly lab tests are done to alert your doctor to any signs of anything untoward happening to you whilst taking your drugs not just to check CK levels. Autumm

Thank you everyone. i love this forum and really appreciate your prompt replies. I am only on painkillers and Azathioprine as the prednisone did not help my muscle weakness or pain after 6 weeks. They think this was because it took 10 years to get a diagnosis. I do trust my specialist and i guess that is why I have not asked too many questions. Thanks for allaying my fears.

I was on them for almost 2 years and a couple of months ago when my white blood count was 2.0 my rheumatologist took me off of them. I took Cellcept. My first neurologust told me that I will be on them the rest of my life, but I think that I feel a ittle better since I have been off them. I don't know how I was suppose to feel when I stopped them, but my rheumy said that is the only way to raise my white count back up. I am going for lab work on Friday and I will see. My veins are so bad that the techs can't get blood. They have tried in both arms, both hands, between fingers all at one sitting and had to tell me they can't get it. So I don't look forward to going. I drink plenty of fluids and rub my arms and hands and it still doesn't work. I buy the genetic brand because the name brand is too expensive.

I have been on Cellcept for 3 years now and will be on them for awhile. May be a lower maintenance dose. We do take lower doses than what they are usually used for. Some receive remission without drugs, some remission with drugs and some with the disease controlled by drugs. Good that you have a monthly blood test as you can see how your glucose, WBC count, etc is. Hang in there -:)

What specifically have you been taking? Maria