Hi, I am pretty new here and it's been a long whiles, so I will introduce myself again. I am 29 years old, never smoked, am not overwight, and have had asthma all of my life. Things were bad as a kid, but improved throughout my teens. Since around 20 things have been progressively getting worse. My doctor has now labeled me as severe steroid dependent. I am currently taking a suitcase of meds. These include Advair 500/50, pulmicort neb .5 mg three times a day, singulair, allegra D, nexium ( for silent GERD), prednisone ( anywhere from 20 to 60 mg a day), xopenex 1.25mg about every four hours, diazide( for htn due to steroids), wellbutrin (for obvios reasons lol), maxair as needed,xolair( which my doc doesn't think is helping much since I have been on it for 10 months) and of course calcium and potassium. I have been hospitalized numerous times. This year it has been six times so far. Twice being intubated and on a vent, and the remaining four I have squeaked by on heliox, BIPAP, continuous nebs at 15mg/hr and huge doses of iv steroids. I am pretty cautios of all triggers etc.

My question is has anyone ever used or heard of using methotrexate to get off of oral steroids? My pulmonologist mentioned staring that at my last visit, since the xolair is not making much difference.From what I have read it is a pretty scary drug. So I was wondering if anyone had any experience with it. I know prednisone is not good for your body, but this drug sounds worse. Thanks for any replies. If you have any other suggestions I could talk to my doc about that would be great also.

I don't know much about methotrexate for asthma, but I do know that methotrexate is often used for rheumatoid arthritis and cancer. It works by interfering with how the DNA in the body is produced. Perhaps if you go onto the Arthritis board, they can provide you with more information on it. My doctor didn't want me on it because I have mild COPD also... but I don't know what that has to do with methotrexate. lol.

And yes, I've heard it is pretty scary also. It has been known to cause problems with the blood, bone marrow, stomach, kidney, and liver. Probably some more that I've missed too. If you were to go on it, I'd think you'd need to be closely monitored as I am (blood draws, weekly dr appointments, etc.)

I just began 50mg of Sandimmune (cyclosporine) twice a day about a week ago, much to my disappointment (it's an immunosupressant). The worst part is - I'm still taking prednisone. They want me on it while on Sandimmune, argh. I hate this. My immune system is going to go splat. Lovely.

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

Hi
Sorry your having such a rough time of it. I've not been on methotrexate, but have had it mentioned to me as an option. I'm hoping to start a sub cut infusion of terbutaline in the next few weeks to try and get me off the steroids. The other thing I've had mentioned is the cyclosporin.
Sorry I can't be much help, but I know it sometimes makes me feel a little better just knowing there are others out there going through the same thing!
Take care
love and hugs blue x x x

Thanks everyone for the ideas and support. I just got back out of "jail" again. Things were not as bad as they have been, so only had to stay five days. They did start me on the methotrexate in the hospital, it is oral three times a week. I am pretty tired all the time, but not sure if its the meds or just asthma. I am definately going to ask about the lidocaine. Thanks so much for that idea. All I want is off this stupid prednisone. It is nice to know I am not alone, although I wouldn't wish this on anyone. Will let you know if the mtx helps at all. Thanks again for all the support.

Hugs

Hi
Hope that it works for you. I'm going in for the sub-cut trial on the 20th September. Slightly apprehensive, as everyone is worried that I am pinning too much hope on it! If it doesn't work and get me of the steroids I wilol be devastated.
Take care
Blue

Well, I couldn't handle the methotrexate. I got severe nausea and fatigue from it. I could't go for more that four hours of being awake!! Doc is talking about trying gold as an option now. Looked it up, but doesn't sound too great. Blue, let me know if the sub-cut terbutaline helps. I see my doc on thursday to talk about the options out there. I intend to mention the lidocain and the tubutaline to him. He is doing a lot of research and calls me at home to see how I am doing which makes me feel like he is a great doc. I am just frustrated and so is he and everyone else. Thanks again for the support. I will let you know what the next option is that I will try.

Hugs to all, sandra ( a very tired wheezy mess)

Merlin
Will definately let you know how I get on with the sub-cut. If your consultant needs info on it, it's the Royal Brompton hospital in London which has done a lot of research on it. Hope the Drs come up with something to help you soon.
Blue
x x