Prednisone Side Effects and Withdrawal Symptoms

I’m not sure either, I have the same problem, thought maybe it was just aging (I’m 74), but now not so sure!!
I did get a pair of 1 pound weights to exercise with- didn’t want to lift too much weight because PMR in my shoulders is so bad. I’m currently on 7.5 mg. Prednisone.

I was told there were three possibilities when I was diagnosed with reactive arthritis. The first possibility was that it could happen once and never recur. The second possibility was it could recur and then have a recurring pattern of flares. The last possibility was that reactive arthritis could become a chronic condition.

I thought I had the "one and done variety" of reactive arthritis because it didn't recur until 5 years later. After the second time, the flares of reactive arthritis would recur once or twice every year. I treated my lower back pain myself. However, my ophthalmologist said I needed to be seen if ever I suspected a uveitis flare. He made it very clear that I should never start Prednisone for uveitis before he looked at my eye first. My ophthalmologist said an eye infection can cause uveitis and the treatment would not be Prednisone in that case. Only the autoimmune type of uveitis was treated with Prednisone.

I never saw a rheumatologist during this 20 year period of recurring flares of uveitis and reactive arthritis. When I went more than a year without a flare. I thought maybe I was "over it" and I would never need Prednisone again. My prednisone supply was mostly expired so I threw it all away. I figured my supply would be replenished if I ever had another flare of uveitis.

I never had another flare of uveitis but I started to have bilateral shoulder pain with stiffness that seemed to spread everywhere. My wife made me go to her primary care doctor. I just wanted some Prednisone but I didn't have my own primary care doctor. My wife's primary care doctor looked at me like I was an idiot and she said I needed a rheumatologist.

For about a year, the rheumatologists I saw thought my reactive arthritis had become chronic. They "restricted" me from taking Prednisone because they said reactive arthritis wasn't treated with long term Prednisone. I managed to find a "sympathetic" primary care doctor who tried to help me. He prescribed limited amounts of Prednisone to me. When I told my rheumatologist how quickly the "shoulder pain" disappeared when I took Prednisone they said shoulder pain wasn't a characteristic of reactive arthritis. When I told them I never had shoulder pain during my 20 years with reactive arthritis --- PMR was diagnosed. When I told my primary care doctor about the PMR diagnosis, he said that was what he thought it was all along. However, he was listening to the rheumatologists who were telling him it wasn't PMR.

I didn't know what PMR was at the time. I just kept insisting I needed some Prednisone. The longer I needed Prednisone, I was convinced it was PMR because of all the shoulder pain. I was 52 years old at the time so I was old enough to have PMR. I think there was reactive arthritis mixed in with PMR and that made it impossible to get off Prednisone for 12 years.

Wow 😮 we are a mess, aren’t we?!
When I was first diagnosed with “Reiters syndrome” (now reactive arthritis) I had the textbook symptoms of conjunctivitis(hemorrhage type)/uveitis, cystitis and inflammatory(non-rheumatoid) arthritis all over— I was 25 yrs old.
I was told at the time that all my infections would clear up but that I would most likely have arthritis for the rest of my life! Not something you want to hear at that age since I had it all over, everywhere!! I was treated with Indocin, aspirin and prednisone cause that was all they had in those days and they didn’t want me addicted to any opioids. After a year of arthritis , I went into remission for 20 years! When it flared up after that period I received short treatments with prednisone. One time they gave me Meloxicam for a short time, with carafate to protect my stomach. It was also during this time I was taking Motrin and I learned not to use any more long term NSAIDS as they caused some GI bleeding, that stopped when I discontinued Motrin.
The doctors also told me when first diagnosed that even though I tested negative for RA, it acted like RA!
I did not get PMR until two years ago—also with classic symptoms of shoulder, neck, upper arm pain. Mostly I’ve been treated with prednisone and occasional opioids for pain. Ttied other oral meds with no success, just yucky side effects, so now doctor wants me to try Actemra — on hold for now because of respiratory issues I’m having.

I hope you get to try Actemra. I also hope Actemra works for you. Actemra was offered to me as my best hope of ever getting off Prednisone but it didn't come with any guarantee.

Do you know why it is called reactive arthritis now instead of Reiter's syndrome? Hans Reiter was a Nazi war criminal. I will put a link about reactive arthritis here in case anyone is interested.
https://emedicine.medscape.com/article/331347-overview#a2
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I'm not a fan of prednisone. However, I give prednisone credit for me not being addicted to opioids. My doctors never prescribed opioids to me except for post-op surgical pain. I mostly took Prednisone for all my autoimmune pain. I have tried many types of NSAIDs and DMARDs. I am relatively new to biologics but I have been on Actemra for more than 5 years.

Prednisone spared me from surgical interventions a couple of times. I was told I wasn't a good surgical candidate for a lumbar fusion because of chronic prednisone use. The spine surgeon didn't think I had enough solid bone to hold all the hardware that would be needed to fuse my lumbar spine. Also, when I needed Prednisone, I was at risk for too many surgical complications.

I had a tremendous response from Actemra. I haven't needed any Prednisone for 3.5 years. Not only was I able to discontinue Prednisone but I also was able to discontinue 5 more medications that were treating Prednisone side effects.

A lumbar fusion is a possibility now but I don't have that much pain anymore. I would need to be off Actemra for a month before surgery and a month after surgery. I could probably be off Actemra that long but I won't do the lumbar fusion unless the pain returns.

My medical problem list now reads a "history of" long term Prednisone use.

I'm not sure how I feel about Actemra because I don't seem to have any adverse effects from it. However, my medical record lists "long term, current use of Actemra (tocilizumab)" as a medical problem.

Mine told me the same thing. In fact, he said if I could taper down to 4 or 5, it wouldn't hurt me to stay on it for years.

So I’m currently taking 7.5 mg prednisone but with no L.D. Aspirin and I have no bruising on my forearms, just very thin and dry skin that I have to keep moisturized! I also have that crepy skin on my forearm that I don’t like!! I think that’s from aging, not prednisone….☹️

Not sure I agree. I am 72 none of that skin. My wife has been on steroids the last four years and looks like a Georgia peach. True not everyone ages the same but I would say a lot more to do with prednisone enhancing the aging process.

Not sure I agree. I am 72 none of that skin. My wife has been on steroids the last four years and looks like a Georgia peach. True not everyone ages the same but I would say a lot more to do with prednisone enhancing the aging process.

Strange, but probably true!! My husband tells me my skin on the rest of me is still as soft as it always has been!!😂. And it really is soft!!! But my arms are a different story….rough, crepy and occasionally with purple bruises if I’m clumsy and bump against something with my arm!!
Hope you wife is doing better- my thoughts are with you and the wonderful care you give her. ❤️🙏