Leaving the Pred Zone

[Alysia]

I think I will forever be on pred 5mg. Cant reduce it.
Some of us can be "predless". Some not.
I am still mad at Phil'd dumb wg doc who told him that he doesnt need pred. I think that the wg was smoldering and caused him the holes in his lungs. If he was still on pred all the time, he might still be alive. At least this is what I think.

[Debbie C]

I have been in drug free remission since 2010 with a little bump of a couple of months when I went back on Pred, like Michelle, Doc gave me the option of taking it or not. I did for a month or so and found little difference so tapered off and I remain there.
Dale

Did you have any withdrawal systems getting off it? Like I mentioned before I tried just by lowering it by 1/2( taking 4 1/2 ) and I felt horrible that I couldn't even do it for 2 days.

[renidrag]

I don't recall withdrawal symptoms. Dr. Stone (MGH) asked me how I felt and I felt okay. Well "let's see how it goes" and here I am. I still suffer from fatigue, probably always will. Most people have a problem getting off Pred, for some reason I did not .
Dale

[Jaha]

I have been on various doses of preds for 5years now and have developed Cushing's syndrome, damage to my back and joints. I am trying to taper down to a least 5mg of preds and then will see what happens. I have always had a lot of problems when I would try to lower to 10mgs, but was taking it down by 2.5mg every two weeks. I took the advice from many here and am now at 8mg, by going down by 1/2mg at a time. I am having pain in the joints, but am just trying to adjust to it. I am just doing the RTX right now after, using every Tx their is. I wish for everyone the every best for getting to the lowest dose possible for them.

[Green Grass & High Tides]

After a 1.5 year taper from 60 mg of prednisone, ... I'd be interested in hearing from anyone who has achieved drug free remission and for how long.

Hi Tom - I had mild to moderate disease from 1998. For approx 10 years, from 2004 until 2014, I was more or less off wegeners drugs. However, I drastically changed my lifestyle which only the wegeners horror of 1998-2003 could convince me to do. 1 or 2 years of pred and 3years of MTX didn't really do the job and I refused Cytoxan after kidney and lung involvement. You shoulda seen my face the first time I had juice with Kale in it! But w/ lifestyle change it worked! I got better. A lot better. Stopped the MTX a few months later. Remission? Not sure I believe in that word for this. But I got better, with flares. I used Flonase occassionally if the sinus flush didn't do it and I could feel the weg type sinus, throat, lung thing coming. Occasssionally, I used 40-60mg of pred for a painful neuritis flare or eye thing and then taper down 10mg day for 7-10 days to zero pred. But after 10 years that's hard to do and this thing is a beast when it wants to be. 2014 had severe disease activity I'm finishing a year of RTX and have had 4 infusions of CTX with 2 to go. Got off pred for a month in april 2015 but had a lung and cns flare. Scary. So back on the pred and Cytoxan.

I currently have concerns about low dose pred being subtherapeutic and ultimately counterproductive to my disease long term. I tried 10mg a day pred for about 10 months of Rituxan tx. My endocrine system is a mess from the steroids and the number one trigger for wegs is stressors that the endocrine system including the HPA Axis regulates. So at this point I'm in a catch 22. I need steroids to survive right now but they also aggravate the disease. When I take a low dose it helps a little but keeps feeding the wegs. It does nothing to treat the autoimmune disorder that I can tell and actually aggravates the system designed to tell my immune cells stop attacking "self" cells. I hope this is being looked at by researchers. I do however, treat steroid use therapeutically. I finally agreed to take something to counteract the negative effects. There's a million ways to do that and perhaps everyone's needs are different. But unchecked prednisone is a dangerous thing and I'm not so sure about subtherapeutic doses being a good long term solution. Neuroendocrinology may someday tailor the exact right dose of steroid for us but this is impossible without baseline cortisol testing. I've never had that done.

Abtatecept is something that I'm interested in that seems like a way to get away from pred after "remission" like states are achieved. But that's pending I think...
T

[Dirty Don]

I am in drug free remission as of 2 mos ago. Got rid of pred after 1 failure & a very slow taper last year. MTX this year is gone...nothing left! Been a long 4 years. Mostly slow and monitored tapers of both drugs. Numbers are all good for 2 years in a row...that's how tediously exact & careful Mayo is. No reactions after MTX gone, am feeling well, still get fatigued, feel like a 'drugged' weight has been lifted...I feel very good now. I am now in the 40% category for relapse within 2 years...way it goes, better than I've been. Hcp is even slipping down finally! I PASS the spoons out now instead of receiving them...yea!

[Alias]

Congratulations, and fingers crossed for a permanent remission. I hope to follow in your footsteps, but expect the doc will want me to coast along on MTX for quite a while yet. Based on what I've read here and elsewhere I feel fortunate to have had an uneventful taper from prednisone.

[Birdie]

that's how tediously exact & careful Mayo is.

If only Mayo accepted Cigna... Stay clear of both Scottsdale Health Care hospitals. They have serious issues.

[drz]

e

I currently have concerns about low dose pred being subtherapeutic and ultimately counterproductive to my disease long term. I tried 10mg a day pred for about 10 months of Rituxan tx. My endocrine system is a mess from the steroids and the number one trigger for wegs is stressors that the endocrine system including the HPA Axis regulates. So at this point I'm in a catch 22. I need steroids to survive right now but they also aggravate the disease. When I take a low dose it helps a little but keeps feeding the wegs. It does nothing to treat the autoimmune disorder that I can tell and actually aggravates the system designed to tell my immune cells stop attacking "self" cells. I hope this is being looked at by researchers. I do however, treat steroid use therapeutically. I finally agreed to take something to counteract the negative effects. There's a million ways to do that and perhaps everyone's needs are different. But unchecked prednisone is a dangerous thing and I'm not so sure about subtherapeutic doses being a good long term solution. Neuroendocrinology may someday tailor the exact right dose of steroid for us but this is impossible without baseline cortisol testing. I've never had that done.

Abtatecept is something that I'm interested in that seems like a way to get away from pred after "remission" like states are achieved. But that's pending I think...
T

Have you looked at other forms of steroids that might work better for you? Some people have gone this route and it seemed better for them.

[Green Grass & High Tides]

Have you looked at other forms of steroids that might work better for you? Some people have gone this route and it seemed better for them.

I looked but could only find fludrocortisone. I asked my Rheumatologist about it and he didn't think it was a good idea. I'd love to find a steroid that did work better.
Do you have any suggestions?
Tom