Drug Preference

My thoughts too. Originally I had suspected ADEM, now it's suspected CLIPPERS. I'll need a low dose of steroids for some time, and we know the steroids work. I want to understand if there's a good reason to change drugs, or whether it's just my specialist's preference. He did offer me the choice - his preference was for Azathioprine, I didn't think to ask why.

According to this paper:

"CLIPPERS: chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. Review of an increasingly recognized entity within the spectrum of inflammatory central nervous system disorders   A Dudesek,"

the treatment is longterm steroids combined with an immunosuppressive agent as a steroid-sparer. i.e. pred works - but you may manage on a lower dose using a second drug.

A few drugs sometimes enable patients to get the same result from a lower dose of pred. So it isn't CHANGING the drug - it's adding it in the hope your long term treatment with pred will be achieved with a lower dose of pred. But if generally you get away with only 2 or 3mg I wonder why he is so keen to get you on to azathioprine. It has some unpleasant side effects - of course, everything does. 

The paper says 

"Chronic GCS therapy seems to be necessary, as attempts to taper oral GCS below a daily dose of 10–20?mg (prednisone equivalent) leads almost inevitably to neurological relapse. As chronic GCS therapy is limited by GCS side effects, additional GCS-sparing agents were commonly used to reduce the daily glucocorticosteroid dose in long-term therapy. It seems noteworthy, however, that some immunosuppressive agents, given alone without sustained GCS therapy, are obviously not capable of maintaining remission and therefore cannot replace GCS completely."

So I think if it were me, I would want to discuss it in detail with him. If you needed as much as 10-20 mg to prevent a flare then I see why he would want you to try a steroid sparer. If you are doing pretty well on 5mg - I'm not sure I see why he wants to rock the boat if you feel well and the side effects are minimal. However - I don't think he wants to try aza INSTEAD - if he does I would ask for reasons and possibly a second opinion. It is a very rare disease, you need to be sure he's up to speed on it!

I have no problems now with pred - I did gain weight with one sort but a low carb diet has dealt with weight concerns and also helps with the risk of developing pred-induced diabetes. No bone-density problems even having been on pred for over 7 years, a lot of it at above 10mg. Nor cataracts (I wish) or anything else.

The paper is a bit heavy - but there are sections about treatment that are OK. The whole paper is free to air to read if you are interested - I'd put the link but it will go for moderation, If you google it and get the abstract at the top right is a bit where it tells you how to get to the full text. I'll send you a pm with the link though.

Hope this has helped.

Thanks - that is useful. I'm not very convinced that I need to change

As I said - I doubt it is a CHANGE, I think it is an add-on which he thinks may reduce the dose of pred (even though it is already low) or he thinks it may prevent flares, which was something I hadn't thought of when I wrote before. 

Good luck doing your homework and discussing it with him.