Prednisone Side Effects and Withdrawal Symptoms

Posted by hopeinal @hopeinal, Jul 6 3:55pm

Since it's been a couple of years since the last discussion I found about one of my problems since going on Pred---red eyes that are red rimmed as well, sort of like a really bad case of pinkeye---I thought I'd ask again to see if anyone else has experienced this.

I was tapering last month and doing well, went from 15 mg down to about 6.5 when I crashed and burned with a huge flare and had to go all the way to 20 to get relief. But while I was tapering and got below 10 mg, my perpetually demon-red eyes cleared up and actually looked normal again. As soon as I had to increase my Prednisone dose, they went back to the pinkeye effect. Not being a big believer in coincidence, I feel sure the Pred is the problem with my eyes. I've seen three ophthamalogists and they couldn't diagnose it.

Anybody else had this happen? Also, as I mentioned on here recently, my forearms and tops of both hands are absolutely scary looking. So covered in deep purple bruises, skin tears everywhere because my skin is now tissue thin....it's awful. I've seen photos in other PMR groups of people on Pred whose arms look like mine. According to my research (thank you Google) thinning skin is a side effect of Prednisone. So, I'm now wondering if that's also the problem with my eyes, that the blood vessels are breaking because the membrane (skin) over my eyes has thinned.

What are your thoughts or experience with side effects of Prednisone?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@hopeinal

Thank you so much for the well wishes and same to you. I don't take NSAIDS at all because I have CKD and I'm not on a blood thinner, so I feel that it must be the Prednisone causing such extreme bruising and tissue thin skin on my arms and hands. 50 years!!! Oh gosh, that's a long time to take Pred. I've had my PMR for about two years, too, but didn't manage to get it diagnosed until I did it myself. Went to doctor after doctor. Luckily for me I was a nurse for 42 years and know how to navigate and understand medical sites and jargon, so I finally found PMR and realized it was what I had. The doctor ran my inflammation markers and they were out the roof, plus I had the typical symptoms: locked up and couldn't even get out of bed in the mornings, couldn't raise my arms above my head, excruciating pain in my arms, shoulders, hips, flu-like symptoms, etc.

Prednisone worked for me within 3 hours of taking the first 10 mg pill. I stayed on that dosage until I got in with a rheumatologist who bumped it up to 15 for 6 weeks then back to 10. The 10 mg completely controlled my pain and other symptoms. I have a love-hate relationship with Prednisone. haha Best wishes to you, too!

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Me too! I have a love/hate relationship with prednisone! Yes, it really is a miracle drug in a lot of ways, considering how many times it’s worked for acute asthma episodes and also for arthritis and PMR inflammation!
And then there’s those long term side effects—your thinning skin and the fragile bones of osteoporosis…..

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@janetorcas

Hi! I am one of those with the purple bruises and skin tears. One (small) tear on my hand came very close to an exposed vein! I was very worried that the wound wouldn't heal because the flap of skin fell off and I couldn't get the edges of the wound to meet. But using non-stick pads and paper tape to hold it in place did the trick. It took about 10 days to heal. Amazingly, there is no scar.

I have not had the red rimmed eyes, but have had several burst blood vessels - definitely demon-like, scary looking. My rheumatologist didn't seem concerned.

I am tapering and am at 9mg/day. My skin isn't bruising quite as easily and I have had fewer eye issues - although I noticed a newly red eye just yesterday. It isn't as bad as previous issues, so maybe the lower dose is making me less susceptible?

I have read here that skin does make some recovery over time. Crossing my fingers! Wishing you the best!

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Hi Janetorcas!
Just a small tip for all of you thin skinners— don’t use any tape ( yes, even paper tape!) on your skin. Use the self-adherent wrap that stretches and sticks to itself (trade names co-flex or co-ban). They sell it everywhere and target even sells it in other colors besides white or beige! I used it on my patients who had thin skin or who were allergic to tape after drawing their blood…

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@dadcue

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.

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Dadcue,
They took a lot of fluid from my affected knees when I was hospitalized for this. They did cultures for bacteria, fungus and TB—all were negative so they came to the conclusion that my infections were caused by a virus! I was also only the second female that my rheumatologist had seen who had this condition— which is present in only 2% of the female population!

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@jlo2252

Hi Janetorcas!
Just a small tip for all of you thin skinners— don’t use any tape ( yes, even paper tape!) on your skin. Use the self-adherent wrap that stretches and sticks to itself (trade names co-flex or co-ban). They sell it everywhere and target even sells it in other colors besides white or beige! I used it on my patients who had thin skin or who were allergic to tape after drawing their blood…

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Thank you! I learned that the hard way back in my early days of nursing when I caused a skin tear on an elderly patient with an adhesive bandage. I've gone through a lot of the elastic wraps and like the pretty colors they come in now. 🙂

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@jlo2252

Me too! I have a love/hate relationship with prednisone! Yes, it really is a miracle drug in a lot of ways, considering how many times it’s worked for acute asthma episodes and also for arthritis and PMR inflammation!
And then there’s those long term side effects—your thinning skin and the fragile bones of osteoporosis…..

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Yes, I agree! Prednisone gave me my life back. I was so miserable and debilitated from the agonizing pain and flu-like symptoms by the time I started on it, my quality of life was very poor. It turned all that around within 3 hours after swallowing the first pill, so it was like a miracle for me. That being said, while I do still love its good points, I really really don't love the bruising, skin tears, fatigue, hair loss, extreme red bloodshot eyes, big undereye bags on top of bags and puffy face. Next Monday I'll taper to 8 mg daily. I think the other times I've tried to taper I went too fast, against what my doctor told me and the taper chart he sent home with me. I'm being compliant this time. 🙂

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@hopeinal

I sympathize on the fatigue. I've had a lot of that, too. But I turned 72 last week so it's hard to tell how much of my slowing down is Pred and how much is age. I can relate about your job too and not trying to rub it in but I LOVE being retired! It's a perk of old age as far as I'm concerned. lol I'm hoping that when I can taper completely off Prednisone---if I can---my eyes and bruised arms will clear up. My hair was always very thick until the Prednsone and that's very much a possible side effect. The weird thing is mine is growing back in curly. It's never been curly. The texture is different too, much finer. It's crazy I know. Wishing you the very best! It's right at 100 degrees every day where I live, so I can relate to that too.

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Yes, retirement is very nice! Hard to work when you are so tired much of the time. I was also in the medical field for 45 years!
First as a medical assistant for 5 years. Then I took a year off when I had my son. Then for another 20 years in hospitals working as a certified phlebotomy technician( and taking a short break to have my beautiful daughter!) Also during this time I trained as a Laboratory Assistant working in Microbiology (my favorite!), Pathology ,chemistry and Hematology.. then another 20 years working for Kaiser-Permanente clinic as a Lab Assistant/Phlebotomy Technician. I loved my work, but I truly don’t miss getting up early in the morning! 🙂

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I don't know. I do know that it causes muscle atrophy, which would certainly cause crepey skin over where the mucsles deteriorated. My forearms and even calves have become crepey since the PMR and Prednisone but my friends and family that are in my age group complain of crepiness and they aren't on Prednisone so maybe just aging. I've gotten so weak though that I'm almost like that "Help I've fallen and I can't get up" commercial. Signed up for YogaGo, an online thing that's very inexpensive and offers tons of videos for seniors. A lot of them are for "armchair yoga" which I like. Only been doing it about two months but I can definitely tell a difference so I'll stick with it.

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@jlo2252

Yes, retirement is very nice! Hard to work when you are so tired much of the time. I was also in the medical field for 45 years!
First as a medical assistant for 5 years. Then I took a year off when I had my son. Then for another 20 years in hospitals working as a certified phlebotomy technician( and taking a short break to have my beautiful daughter!) Also during this time I trained as a Laboratory Assistant working in Microbiology (my favorite!), Pathology ,chemistry and Hematology.. then another 20 years working for Kaiser-Permanente clinic as a Lab Assistant/Phlebotomy Technician. I loved my work, but I truly don’t miss getting up early in the morning! 🙂

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Wow you've had a wonderful career! I didn't work much when my three kids were growing up, just sporadically. But I made up for it later. lol

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@hopeinal

Wow you've had a wonderful career! I didn't work much when my three kids were growing up, just sporadically. But I made up for it later. lol

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@hopeinal,
Yes, I’ve been very fortunate to have worked in a job I loved, considering all the health issues I’ve had!! My only regret is that I didn’t complete a nursing program— but I still loved what I did and I was good at it and worked with some wonderful people! I was lucky! 🥰❤️💕

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@hopeinal

That may be, but I've seen several photos posted by men in other PMR groups that show their forearms and hands as bad or worse than mine. But like I said, we don't all have the same side effects. Sounds like you dodged that bullet although it affected your legs. Sorry. I'm sure that's painful. 🙁

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@hopeinal,
I know that everyone is different in there side effects, but I do think that bruising could be dose-related!
What is your current dose of prednisone?

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