Prednisone support group?

Posted by Suzi R @suziropiequet, Sat, Jul 13 11:53am

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.

Liked by noahs

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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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