Ides on beating pred dependence?

[BookNut]

Alysia suggested I post this question. Here is a brief history for those of you who don't know me.

I was MISdiagnosed with Wegeners 2-3 years ago because of recurrent sinus and lung infections which cause a 24/7/365 wheeze in my lower lobes when I am doing well (!) - and extreme shortness of breath , gasping for air, and heavy duty wheezing when I am in an exacerbation. I stayed on the forum because many of my symptoms are similar and I love you guys!

This all started 4 years ago out of the blue. The only things that have been diagnosed are "Mild Bronchietasis", supposedly so mild that it should not be causing all this illness, chronic rhino-sinusitis, and asthma . Things worsened over the years. At first a low dose of pred took care of the worst times. Then I was on a 40 mg taper about 4 times a year. Now it is up to 8 times a year at least. I have tried going down to 5 mg and staying there, No luck. I tried 10 mg daily - no luck.

Here is what is really making me nervous. The last two or three tapers at 40 mg did not really solve the problem. A taper used to make me feel almost normal for 2-3 weeks before the inevitable down-hill slide. Now it takes 60 mg to get me out of the funk. 60 mg has serious effects on my ability to hold my temper. I am usually a very calm person - but 60 turns me into the incredible hulk.

I am currently following a very strict diet of no grains, no dairy, very little fruit, and only grass fed/organic meat. After 10 days, we are going to try adding things back. Trying to ID a food allergy. Not sure this is going to work. Once I am ready to add things back - i might be off of the prednisone and getting ready to get sick again anyway. But I guess that is for my doctor to decide.

THE CRUX OF MY QUESTION IS THIS:

How do I get over my prednisone dependence? I have heard about massaging the adrenal glands. The sites I find on google are mostly pushing herbal remedies. They MIGHT be useful. I take many myself. But I just don't trust a site whose main thing is to sell you a product. I will keep searching of course - deeper into google. It is just annoying that the commercial sites come up first.

The sinus issues have virtually cleared up since I have been taking n-acytlcysteine 3 x a day. I had great hope of that stopping the cycle - but - so far no go.

I would appreciate any advice you might have for me.

P.S. The diet is horrendously difficult. I started a modified version last Friday and started for real on Monday. Lost 4 pounds as of this morning.

[Birdie]

60 turns me into the incredible hulk.

How do I get over my prednisone dependence?

In the near future I see a new comic book: Librarian Hulk! Seriously, no really, overdue books and talking are not a wise idea.

I was originally on 80mg for less than four weeks when he reduced it to 60. In a few days I crashed bad and was in the ER and back to 80. Next time he tried 70 with the same result. Then 75 gave me same-same. A total of six times in 7 months. Then they figured out my entire body was polluted with infections and the pred was masking them, keeping me propped up. Without it I crashed. 80 mg for about 9 months nearly killed me. Once the infections were handled I reduced pred without serious issues, 5 mg every two or three weeks. Stayed at 10 for a few months because 5 started a flare. I've been at 5 mg for over 2 years. 10 mg causes serious problems after about 5 days.

Six different times I was in the hospital for several days whenever he told me to cut pred from 80 to anything lower. There was mention of replacing pred with, uhm, I don't remember what it was called. There was another option but they figured out my issue before getting to that point. Maybe something else (not very helpfull, eh?) is what you need instead of pred next time. The substitution method sometimes works for other addictions.

[BookNut]

Wow! That's intense. i have had a bronchoscopy and nothing big was found in the lungs. ENT took a culture from my sinuses and found staph aureus. I take antibiotics thee times a week for that. Nobody seems to know what to do...other than throw more prednisone at me.

[Birdie]

throw more prednisone at me.

Duck. Keep ducking. That's my only thought on the matter. Find another way of taking care of the issue next time, and from now on.

[BookNut]

:biggrin1: I keep trying that. But when my breathing gets really bad - I think I need a lifesaver. Can't eat the candy kind, as I am allergic to artificial colors! Hoping for a different med. Maybe if I try staying at 20 mg for a little while.....

[Birdie]

Maybe if I try staying at 20 mg for a little while.....

Onward Predrage soldier.
Marching off to Walgreens.

[annekat]

The only substitution for pred I've heard of is hydrocortisone, another steroid. My weggie mind has to keep trying to remember what the differences are and why our friend Sangye was switched. For her, I think it had partly to do with that it made it possible to measure the actual level of cortisone being produced by her adrenals, apart from the steroid. Reading this article, Medical Mojave: Prednisone vs. Hydrocortisone for Adrenal Suppression: Pros, Cons, and Tips (http://pissedoffpatient.blogspot.com/2011/04/prednisone-vs-hydrocortisone-for.html) helped me to understand that better by pointing out that hydrocortisone has a much shorter half-life than pred. Thus, if you take it once a day, there will be a time when there is no steroid in your system, which is not the case with pred. The article, though, focused not on the testing of levels, but on your adrenals being prodded to produce cortisol during that window of time. I got the feeling that this switch would be done while at lower levels of pred and not in acute stages of disease. It reminds me of the alternating method of pred tapering where some have done, say, 5mg. one day and 0mg. the next. So the second day, there'd be no pred in your system and the adrenals would be stimulated to produce, if you could handle that. Maybe best if you just read the article, which was written by an asthmatic (see 'patient cliff notes' in sidebar). And better yet, check out this whole Google Search that I got that from, but I didn't read most of the entries.... it looks like there is a lot of info there: prednisone or hydrocortisone for adrenal insufficiency - Google Search (http://www.google.com/search?client=safari&rls=en&q=prednisone+or+hydrocortisone+for+adrenal+insuffi ciency&ie=UTF-8&oe=UTF-8)

Good luck!

[BookNut]

Looks like a good article. Will read tomorrow when I am not under the influence of benadryl. :biggrin1:

Also, you have given my foggy brain some ideas on how to reframe my google search. That should help. I should have time to do some research tomorrow.

Thanks so much Anne. This will really help!

[drz]

Have you consulted with a good endocrinologist with experience in this area?

The right one can certainly explore alternatives to pred and also advise you on best way to try get off pred altogether. It might mean taking another similar drug that has less side effects for you.

This link also has some good info about adrenal insufficiency and treatment:

http://press.endocrine.org/doi/full/10.1210/jc.2009-0032

[BookNut]

Thank you. I have not seen one. That is an excellent idea and I will definitely pursue it!! As usual - this forum is awesome!