Re: Prednisone stepdown - side effects (warning - long)

[Guest guest]

oh my goodness, Madeline!!

I am so very sorry that this has happened to you, and sure wish I knew a fix for you, and for the rest of so many folks on our list who also have such extremely difficult situations thrust on them.

btw, you did present your situation quite concisely, I thought, so whatever cognitive problems the drugs caused didn't compromise your presentation here. and you made it easily readable.

I think, if it were me, I would see whether by ADDing a few complementary modalities, there could be any relief or even bettering. but it would need to be someone REALLY experienced, and knowledgable, methinks.

For instance, sometimes homeopathy can be very powerful.

and acupuncture might ease things? but again, I am feeling not at all sure, and would want someone who is a qualified practitioner, an M.D., a 'collaborator' with your other docs, and someone most intuitive to boot.

and you know, I think I would also write in the TheDoctorsTV or whatever they are called. Can't hurt? But then, if Mayo Clinic is having trouble helping...

In fact, I think I would do what you may already be doing in this post, just presenting my case everywhere I can think of. And I'd find someone(s ) who do Reiki to help me in the meantime. The energy they can give I would hope would also help, and if several at once, maybe even more than help 'keep me going'.

and I'd get on all the prayer groups I could find... Unity, Cayce included?

Jean

From: Madeline

Sent: Thursday, December 11, 2008 1:01 AM

Subject: Prednisone stepdown - side effects (warning - long)

Hi all. I am one of your "lurkers". I try to read most of the postsas I have time, but I don't post on my own on this particular groupvery much. However, I am having some major issues with trying to getoff of these steroids and thought someone may be able to help a bit.First a little bit of history. I have asthma and other severe lungissues due to ozone exposures at work. I have been fighting thissince August 2007. I spent about 3 weeks in and out of the hospitalin Aug/Sept with my lungs just continually "gunking up". They finallybrought in a pulmonologist who diagnosed adult onset asthma andreferred me to a local asthma specialist (who by the way is "thebomb". Best dr I have ever had hands down!) My asthma doc was neversatisfied with the simple adult onset asthma diagnosis because of thequick and severe way it came on (no genetic or historic history of anytype of lung issues) also almost all cases of adult onset asthma aredirectly allergy related. Well, I test negative to all allergies hecan test me for except for the drug Sulfa. Also, I do not respond asindicated to the asthma medications. So, from the time I startedseeing him in October 2007 through May 2008 we tried various"cocktails". Even Xolair did not provide any clinical relief. Theonly thing that helped were albuterol (in large doses) and steroids. So, at least once a month I had to have steroid shots followed by aprednisone step down pack. Then in May 2008 there was an ozone leakat work. It almost completely shut down my lungs. I nearly diedseveral times that night. The attack was so severe that itpermanently damaged the muscles in the bottom of my lungs. They arecompletely "dead" at this point. Also, I only move air in the top 1/3of my lungs and my lungs have shrunk to about 35% of their previousestimated size. From May to the end of August I spent more than 10weeks total in the hospital. Each visit getting progressively longer,and all with extremely high doses of steroids. Finally upon dischargein August. My pulmo decided to keep me on a "maintenance" dose of60mg/day of prednisone, and send me to the Mayo clinic in villeto see if they could figure out what is going on. Mayo is actuallywhere we learned that my lungs are shrinking, but we all agree that Ican't stay on theses levels of prednisone indefinitely. Basically,since August of 2007 I have been mostly on steroids and since May of2008 almost constantly on IV steroids (which are even stronger). Soat this point I am full blown Cushings sydrome, steroid induceddiabetes, 100 pounds heavier, immunity is fried, and all of the otherlovely issues that come along with the steroids. However, on the upside, I can breath. Have to use oxygen only at night, and when theasthma side of this acts up the albuterol actually works. Best ofall, I haven't been in the hospital since coming home from Mayo inlate September. However, I am pretty much under "house arrest". Ihave to avoid groups - no church or school functions with the kids. Iam also having all kinds of cognitive issues. So, if I ramble orrepeat please forgive me.Anyway, all of my docs and myself are in agreement that I have to finda way to majorly decrease the steroids. They are slowly poisoning meand impacting me way too much. It's a case of the cure being worsethan the disease at this point (although next time I can't breathe youwill probably hear me change my tune! LOL) So, we started me on 15mgof methotrexate per week (I just got a phone call the other day frommy daughters health teacher. They were studying drugs and Amberpopped up and said her mom was on meth! It was too hilarious! Had toquickly educate her on the differences between methotrexate andmethamphetamines! Such a sheltered child.) This was one month ago orso. We also started a step down on the prednisone of 5mg every twoweeks. (55mg/day for two weeks then 50mg/day for two weeks, etc.) Well, I was due to drop to 45mg/day this past Monday. However, Istarted having some major symptoms and by Thursday went to see myendocronologist. She told me I was in full DT's from the prednisonewithdrawal and also in the beginning stages of renal failure. Obviously my body really likes the steroids and does not want to letthem go. At this point all of this is totally unrelated to the lungissue. I have never had issues with the lungs until I get to about35mg/day or less on the steroids. So, we have now bumped my levelsback up to 55mg/day for this week and next week. Then we will try torestart the step down at a rate of 2.5mg every two weeks (52.5mg/dayfor two weeks, then 50mg/day for two weeks, etc.) If I havewithdrawal effects again I will have to be hospitalized for the process. My question is has anyone else been through this withdrawal processand is there anything I can do to facilitate the process. I didinform my endo that I checked my calender twice and renal failure isnot on there anywhere. I also don't have any time slated for "jail"(or if you prefer - hospital). LOL! At this rate I am looking at 6months or more before we even get to a point where we can startevaluating to see if the methotrexate will help stabilize my lungs asI have to get the steroids down to at least 30 - 35mg/day for severalweeks. Anyway, sorry this turned into a book. I just thought it might helpif you guys understood some of the history and the whys andwherefores. Any advice is appreciated. I am just completelyexhausted but can't sleep more that about 2 hours at a time right now,and of course my kidneys hurt. The docs are telling me that by theend of the week the kidney function should be a good bit betterbecause the failure was being caused from the withdrawal effects?Thanks for listening.Madeline