Prednisone support group?

Posted by Suzi R @suziropiequet, Jul 13, 2019

Greetings all, it’s been some time since I’ve been on the Mayo board. I thought there was a Prednisone support group. Can anyone helpmeet wth that? Thanks! Suzi

Hi Suzi @suziropiequet — I see one of your earlier posts was in the following discussion group. Is this the discussion you were trying to find?

> Groups > Autoimmune Diseases > Autoimmune attacking my lungs
https://connect.mayoclinic.org/discussion/autoimmune-attacking-my-lungs/

Can you share a little more about your diagnosis and treatment?

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@suziropiequet I’m glad you asked about a prednisone discussion group. That’s exactly what I was going to do! I just started to taper off prednisone and I’m nervous as h… I haven’t been feeling so great since I started and I’m worried that my disease will come back. 😪. What are your questions, concerns? Have you been on prednisone a long time? Maybe some on here can help us!

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Hi Becky @becsbuddy and @suziropiequet — I think that the Polymyalgia Rheumatica (PMR) discussion group is probably the best source for discussion of tapering off of prednisone or long term effects. Here's a link to the discussion.

> Groups > Autoimmune Diseases > PMR Anyone?
https://connect.mayoclinic.org/discussion/pmr-anyone/

My PMR is currently in remission. I've had two occurrences of PMR. Both were treated with prednisone starting with a dosage of 20 mg. The first occurrence it took me 3+ years to taper off of the drug. The last 6 months or so was going back and forth between 1 mg and 1/2 mg of prednisone until I was finally able to stop taking it and only had minor stiffness and not much pain. The second occurence came 6 years after that and it took me 1-1/2 years to taper off of prednisone. The biggest problem I had with prednisone the first go around was a significant weight gain. I was cognizant of that the second time around and worked on some lifestyle changes to keep the weight gain at a minimum 3 to 5 lbs vs 50+ the first time.

What I learned tapering off and working with my rheumatologist was that each of us are different. When I was down in the dumpers trying to taper off and had been stuck at 1 mg for awhile, my rheumatologist shared with me how another one of his patients had finally been able to taper off after being on 1 mg of prednisone for a year. I think you just have to listen to your body and if it doesn't feel right, slow down the tapering effort.

Oh, yes… I do think about my PMR coming back. I call him Mr. Nasty and he is definitely no fun to be around. I think we can't worry about the future but we can make choices that will help us on a day to day basis. Hoping your journey get easier every day.

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Here is another Prednisone Discussion where some members are talking about tapering off prednisone.
https://connect.mayoclinic.org/discussion/prednisone/

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need advice on Prednisone tapering

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starting dose 15 q every other day. Started at seven one day and six the next day and so on. I have been on prednisone much higher doses together with the rituximab as treatment for myasthenia gravis. The myasthenia gravis has burned out and is now marker negative. At my present doses every day have developed symptoms of adrenal insufficiency. Need help on better approach to decrease prednisone. However, concern is possible loss of pituitary— adrenal axis and now prednisone acts las replacement therapy for adrenal insufficiency. When I take 15 mg for example, I feel normal without symptom Bonds on presents therapy regimen of six and 7 mg persistent symptoms of adrenal insufficiency.Does anybody else have a similar problem?Does anybody else have I’m better prednisone tapering system?

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@chals

starting dose 15 q every other day. Started at seven one day and six the next day and so on. I have been on prednisone much higher doses together with the rituximab as treatment for myasthenia gravis. The myasthenia gravis has burned out and is now marker negative. At my present doses every day have developed symptoms of adrenal insufficiency. Need help on better approach to decrease prednisone. However, concern is possible loss of pituitary— adrenal axis and now prednisone acts las replacement therapy for adrenal insufficiency. When I take 15 mg for example, I feel normal without symptom Bonds on presents therapy regimen of six and 7 mg persistent symptoms of adrenal insufficiency.Does anybody else have a similar problem?Does anybody else have I’m better prednisone tapering system?

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@chals What has helped me taper off of prednisone the 2 times that it was active was to keep a daily pain and dosage log on how I felt every day. I generally tried to taper down every two weeks but there were times when it was a month or so at the same dosage. Each time my PMR was active I was started at 20 mg prednisone dosage. Early on I tried to go down by 5 mg but it was difficult so I had my rheumatologist prescribe 2.5 mg and 1 mg tablets so that I could easily go down less than 5 mg every week or so depending on how bad my pain was. I didn't taper lower unless the pain was a 1 or 2 on my personal pain scale of 0 to 10. The last six months of my first occurrence of PMR I went back and forth between 1 mg and 1/2 mg dosage until I could stop taking it and still tolerate the minor aches and pains. Exercise is a must but I just don't over do it and only do what I feel comfortable doing.

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@chals

need advice on Prednisone tapering

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@chals, Here is an easy to read article that hits o the basics of prednisone withdrawal from WebMD.

Prednisone: What to Know About Withdrawal Symptoms
https://www.webmd.com/drug-medication/prednisone-taper

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