Anyone dealing with chronic immune system diseases? Long term steroid use?

[Flounder]

Just seeing if anyone has advice for staying active while battling immune system disorders. Six years ago I was diagnosed with Churg-Strauss Syndrome, a very rare immune system disorder.http://en.wikipedia.org/wiki/Churg-Strauss_syndrome So far things have been going better than expected given that I had a 40% chance of making it 5 years. I have been treated with immune suppressants and prednisone after a course of cytoxan after diagnosis.

Last year I actually got off the prednisone for several months. I was doing so well I was able to reduce my main drug, Cellcept, quite a bit. Unfortunately it got too low and I had a relapse. Back on high doses of prednisone and Cellcept. At last weeks visit to one of my doctors, he mentioned that I would probably not get off prednisone ever again. Sucks because it will keep me alive right up until it kills me. Hopefully it will be low doses with not a lot of side effects.

Any suggestions on things that will help? I did the obvious with diet changes, I don't drink much anymore, and I am working out a lot more. I am actually in about the best shape I have been in. The past 2 years my skiing has been better than ever, my friends claim it is the steroids! I am also getting back into mountain biking and hiking. The thing that sucks the most are weeks like this where I did a reduction in prednisone and it just wipes me out. Also I knew I was never going to be cured but I had hoped for remission and no drugs. Now I have to adjust to the fact that I will be one meds the rest of my life and will have to deal with the long term side effects.

Any suggestions/commiserations welcome.

[Orthoski]

Flounder - props to you for taking a difficult situation and making the most of it. Sounds like you're doing all the right things. One thing to make sure along with diet (and you're likely already doing this) is to take calcium and vitamin D to mitigate the effect of prednisone on bone mass.

Thanks for sharing your experiences with the TGR community.

[Flounder]

Thanks ortho! I am conscious of the calcium and vitamin d. For awhile I was on fosamax but now it seems I am doing well with diet and fortified OJ. I walk a fine line trying to get enough sun exposure without getting burned due to side effects from the meds.

I have a hard time dealing with the message boards that deal with this disease. It seems too many people either give up or don't make the changes to lifestyle that will help them. It took a bit to get my head back on straight but i feel good now. I was always too cautious of a skier (biker, climber) and let fear compromise my performance. Now with a new attitude I am getting over a lot of those fears and it is helping my performance. I also think the disease was impacting my body long before diagnosis. With it under control I feel so much better even though the drugs take a toll.

[XtrPickels]

If you search around on here, I've posted a bit ( I think) about automimmune issues that I have.

The quick recap:I have a slew of autoimmune issues from liver, to pigment cells to GI. I've taken a fairly low dose of predisone 20mg/day, a different steroid (oral budesonide) and am on azathioprine constantly.

For me the story began when I had routine blood values for liver enzymes that were elevated. After about of year we figured out that I had an auto-immune liver disease. All was fine and well until I started getting very fatigued 2 winters ago. Additionally, I was having very severe arthritic pain (I was 28 at the time). I ended up on a medrol-dosepack which cleared up all of my symptoms... immediately. This got me put on Predisone 20mg, which helped me to feel a lot better.

April of last year I broke my hip in a fairly routine mountain bike crash. In September I broke my wrist in an even sillier crash. Turns out I'm osteopenic, which may be related to the prednisone use or to the fact that I am primarily a cyclist.

The hip break was enough to get the doctors to take me off the prednisone and onto budesonide which was a bit more liver specific. After a while of taking that we tried to forgo it and everythign has been ok.

When I started taking the budesonide, I also started the Imuran (azathioprine). That alone has been keeping most things in check, however I do generally feel more fatigued and enter an "over training" state much easier than I feel I ought to. Its all about balance.

My recommendations:
1. Get a bone density scan. Don't wait to break a hip. Also, forget bisphosphanates like fossamax, some bad research is coming out on them (also the commercials for class action law suits). I've been taking Forteo, which is a daily injection. You can't take it for more than 2 years or you risk of bone cancer increases greatly. The literature suggests it works well otherwise. (You win some you lose some?)

2. Attempt to find a drug that is specific to your issue. I wish that we had started with prednisone to calm the initial flair and then changed to budesonide immediately instead of after I broke my hip.

3. Listen to your body and get some sleep! This is my biggest thing. I really feel like garbage if I don't get 8 hours.

4. Fund an FSA (if possible) More shit may pop up in the future and hospital bills build up quickly!

5. Enjoy your life, which is sounds like you're doing. Shit happens, its how we deal with it that matters.

Good luck and have fun.

[Flounder]

Thanks XtraPickels. I do get the bone scans, and so far I am "dense". Of course the wife said she could have told them that without the test. Sleep is so important. I try and be good about it. The meds do really run you down.

I was kinda lucky with my team when I got diagnosed. I started with sinus allergies one summer when I had never had allergies. Come fall I had full blown asthma. By January I was in constant pain from what felt like nerve damage in my back and right shoulder. I also lost some feeling in my right hand. Idiot primary told me it was normal and the pain was muscle related. He even took out a nerve chart and told me nerves didn't make since because it would have to be affecting several nerve branches and that never happens. I spent 3 months totally doped up on oxy and muscle relaxants and just kept getting worse. Luckily one day he was out and I saw another doctor who diagnosed it by reading my chart. He had never seen it but remembered it from med school.

Anyways by that time it was reeking havoc with my kidneys. I had a bunch of tests with my new group of specialists and one day at work they called and said I had to get to the hospital in 2 hours and to plan on spending a week. Hit me with 1,000 mg of pred via IV. Nurses had to keep double checking the dosage since it was so high they thought they misread. Did monthly cytoxan for 6 months and then on to Cellcept. Pred doses are mainly for flares. Tapering now down to 10, and current at 14. I will hopefully only be on a few mg for the rest of my life. Cellcept works really well for me and it doesn't always for others with this disease.

Glad to know others can stay active. The worst thing was loosing the 35 pounds I put on with the heavy doses of pred. I have to stay on top of what I eat and drink and exercise more than ever. I think I am actually headed into better shape than I have been before due to all the exercise.

Thanks!

[Art Shirk]

Flounder, I have no advice but am wishing you the best. Way to take some lemons and say "fuck you lemons." Best of luck in the future.

[old goat]

If you ever have to have surgery or have an open wound or anything else that has to heal Vitamin A 20,000 units per day for no more than 6 weeks will counteract some of the bad effects of steroids on healing. And tell your friends that the kind of steroids you're on are different than the kind athletes use--opposite effect actually--decrease muscle mass instead of increasing it. Good luck.

[Art Shirk]

And tell your friends that the kind of steroids you're on are different than the kind athletes use--opposite effect actually--decrease muscle mass instead of increasing it. Good luck.

That was the joke

[Flounder]

Thanks common law and old goat. I may try the vitamin a trick. It sucks trying to heal cuts on prednisone. Only had one surgery so far. It was when they went in and cut out the polyps in my sinuses and also cut open the passages a lot. Seemed to help immensely as the sinus are where the trouble begins. Recovery of that was better than I expected, and the improved airflow is great. Only downside is everyone now hides the blow when I show up.

Best part of the disease is I now have an excuse as to why my skiing sucks! It always sucked, hence the name flounder....but at least I have a good comeback if anyone calls me on it!

[culcrsr]

This may be a long shot but I'm on a construction project for Baxter Bioscience and they have a product called Gammagard that is for people with immune system deficiencies. You may want to ask your doc about it? Good luck!