I started on Azithioprine a month ago with my CPKs climbing to almost 4000. I just got new blood work back and it looks like it finally kicked in coupled with Methotrexate and dropped a 1,000 points in my CPKs in 10 days! Thank goodness, I was headed for Ivig treatments. I still have a ways to go for normal CPK, but the trend improved! Liver enzymes are good so far, and no other side effects. Tapering Prednisone every two weeks until I get to 20 mg. Then it gets really slow. Azithioprine is really working for me in terms of function, too.

Great news Wonup. You have been brave and strong and positive. I am delighted its finally working well for you. Autumm

@wonup
It sounds like the docs are finally getting a handle on your situation. I'm so glad. You appear to be making positive progress. Congratulations!

Thank you Autumn! I also appreciate Wonup & Nanny! I must admit that I am scared of azathroprine. I get female infections frequently from the prednisone and I read that infections are deadly with azathroprine. My doctor wants me to take 100mg which is two 50mg pills a day. I am not sure how many hours between each pill. I have not been given enough info on this drug to feel secure. I read that the pills also cause pressure in the eyes and I have high pressure already. I am getting a second opinion next week.

I like my doctor, but I am not sure this med is a fit for me. I have been on MTX for three years at this point. MTX was a good drug until it started to effect my brain. I am not taking anything this week except prednisone for now. I hope my doctor will be able to convince me or find a suitable med. I read about all the new meds available for myositis from The Myositis Assoc. I printed out a copy of these meds, and hopefully one of these might be a fit. I must avoid the neurotoxicity.

I will keep everyone posted. Thank you so much for the kind support from each of you.

Wonup, I forgot to mention, but it is terrific to hear that you are stabilizing!!! This is answered prayer!!! I am so glad that you can avoid the Ivig treatments. It is time to celebrate! Thanks for telling us the good news. YEAH!!!

Hi Trpt 1. I am sure you will make the best decision for you as we all must do. I wish you all the very best. It's interesting that some myositis people just take the steriod and no steriod sparing drug at all. Not being a doctor I have no idea why this is. My own doctor is very keen on steriod sparing drugs. At some point when I reach a low dose of steriod I may ask him. Autumm

Hello Autumn,

Steroid sparing drugs are something I ponder about too.

It seems to me that rheumys are prone to putting us on them as a routine matter of course whether we really need them or not.
Maybe because it takes so long for them to kick in.
But in the meantime, we are suffering the side effects of all these drugs.

I'm not so sure we all need them.
What would happen if we just continued the Prednisone taper without additional meds, as long as we are maintaining strength?

I guess I'll find out soon enough.

@autumm
Regarding your question about doctors not using steroid-sparing drugs, my neuro was one who only put me on prednisone. His philosophy was to stay on the steroid until it stopped working, and then add methotrexate or something else. He felt that if you started with a few things, then you didn't have as many options in the future. Again, every doctor is different. But for me, his protocol worked well, and I am now off all prescription meds, which he never thought would be possible. I am really blessed, and the Lord sent me to the best doctor for me. As all doctors are different, so each of us is different. And our diseases all seem to have their own "twist." It's amazing that any of us gets the right "combo," but I'm glad we do.

Hello Nanny,

Was Prednisone the only med you were on?

I'm hoping to taper down to 0 without adding anything.

Hi Nanny and Kathleen. I will ask the question when I next see my doctor. Somewhere in the fog of my steriod brain I seem to remember him telling me it was to dampen down the inflammation and supress any lung issues. Best wishes. autumm

Autumn & Kathleen, I totally understand the reasons for the sparring drugs. The reasons for the drugs are:
1. Prednisone plus a sparring drug quickly brings down a high cpk and gets the disease under control.
2. The sparring drug SHOULD make it possible to totally get off prednisone. The truth is that even with a sparring drug, my DM flares below 5mg of prednisone.
3. The sparring drug slows down the progress of the disease in the body so that less damage is done.
The terrible truth for me is that the sparring drug causes toxicity of the brain. I do not think the doctor looked at the fact that taking a chemo drug for three years would cause a problem.

This sparring drug issue is a big one for all of us. Doctors do not want to put people on Ivig because of the cost. There is also the debate that the disease is effecting the brain as a paraneoplastic problem. I have noticed in the articles that I have read, that even after brain poisoning, the patient is often kept on the same drugs anyway. The medical profession has a tendency to blame the disease and not the medications for the problems.

I will see my neurologist at the end of this month. I am going to let him make the determination on whether I should be taking anything at this point. There is so much that is not known about this disease. We need healthy, effective medications that are affordable and not deadly drugs that kill us.

Hi Trpt 1. You are so very right in what you write. In the meantime we take the drugs because we want to feel better. My doctor seems to believe I will be off the prednisolone eventually but remain on the Azathioprine to suppress the disease. After four months I just want to feel better. Autumm