madelyne

Hi,
I am also diagnosed with severe steroid-dependent asthma...i've been on oral steroids (dreadnisone) for 12 years; I am 28.

I have been on methotrexate as a "sterioid-sparing" agent, as well as numerous other drugs that are thought to be steroid-sparing. It is thought that methotrexate has anti-inflammatory properties, as does prednisone, so that by using mtx the patient can then reduce the steroid dosage. The literature out there is pretty mixed on this, there are few studies for asthma where it is truly successful. My experience on mtx was this: the oral dosages did not help me, and I ended up taking it via IM injection q weekly, I think (this was many years ago!). I ended up getting some severe side-effects from it, but many patients with RA and other disease tolerate it fine. In the end, I had to d/c it b/c of the side-effects, which somehow caused bleeding in my colon.

I also have done another steroid-sparing agent with much better success....it's nebulized lidocaine. Your doc is not likelyto have heard of it is b/c it much less widely used and published about. I first started on it when I finally went to the Mayo clinic to consult and the doc there had just started using it. he had some pretty good success with getting patients off of steroids. It involves nebulizing lidocaine (which is a numbing agent) four times a day...the only drawbacks for me were that it was four times a day and you can't eat/drink an hour afterwards b/c it numbs your throat, so I had to carefully time my meals, etc. But it was much better than the mtx. I did have success on it with tapering my steroids, but never enough to get off completely. It is thought to work by making your lungs less reactive, less twitchy, etc. If you search google i think you can come up with some studies on it. I konw the docs at Mayo use it for steroid-dependency but I don't know if anyone else does. You can also try pubmed through NIH as I know there are some articles there.

I know it's so hard when you've "maxed out" on traditional drug options. It's rough being on the steroids for so many eyars. I just found out recentlythat b/c I've been on oral steroids for so long, the likelihood of my ever getting off is nil as myadrenals no longer work and are atrophied. I am still trying to taper down as low as I can though.

I'm sure you have already done all of this, but haave you ruled out any other underlying diseases? I was diagnosed with a primary immunodeficiency a a late adolescent, after years of severe asthma. It has helped me to control the infections better, though a new disease brings along a host of other issues. Have you ever consulted with an immunologist? the prednisone itself does cause decreased immune response.

Anyway, good luck with whatever you decide. I would definitely look into the lidocaine b/c it's much less intrusive than the mtx since it's inhaled rather than injected. there are no long-term side-effects and just the numbness for short-term. Plus you can mix it with albuterol or whatever else you are already nebulizing.

If yout want any more info or just to talk, let me know!

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Maddy