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.

@emo

Hmm, never heard of that! I’m glad it’s growing back though. I had a PT who was treated for lymphoma, and after it went in remission and started to grow back after chemo, her hair also came back much curlier.

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I had definitely heard this happen with chemo patients! No such luck here with me— just the thinning part—-will see what it does when I finally taper off (on 7.5 mg) !🙂

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Has anyone else noticed the skin on their upper arms loose and wrinkly? I am 66 and my upper arms have no muscle tone, sagging and wrinkly skin. My arms look like that of a 90 year old. This change has occurred in the past year. My arms were not like this last summer. I feel embarrassed to wear short sleeves. I have always used hand weights in my workout twice weekly, so I know it’s not that. I guess it’s the prednisone. But I have been taking no more than 8 mg in the past year and now down to 3. Could this be the prednisone? And if it is, what are the chances the skin on my arms will tighten up again?

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@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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To hopeinal,
Just to clarify, I was not on prednisone for 50 years! It was off/on short term (usually 1-3 weeks) during this time for my asthma. My arthritis actually went into remission for 20 years and I didn’t need prednisone during that time! With PMR, I’ve had to take more long term doses for the last two years. Currently on my 2nd flare up of PMR. ☹️🥲
Still, it is a long time dealing with this medication and it did leave me with osteoporosis and thin skin!

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@ekgilpin1

Has anyone else noticed the skin on their upper arms loose and wrinkly? I am 66 and my upper arms have no muscle tone, sagging and wrinkly skin. My arms look like that of a 90 year old. This change has occurred in the past year. My arms were not like this last summer. I feel embarrassed to wear short sleeves. I have always used hand weights in my workout twice weekly, so I know it’s not that. I guess it’s the prednisone. But I have been taking no more than 8 mg in the past year and now down to 3. Could this be the prednisone? And if it is, what are the chances the skin on my arms will tighten up again?

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Yes, I have noticed this side effect, which has only gotten worse as I taper. I still have hope that when I get off the prednisone, I can get a thicker skin. Anyone have that happen? I started at 10 and after a year I am down to 2. No flares yet, fingers crossed.

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@jlo2252

To hopeinal,
Just to clarify, I was not on prednisone for 50 years! It was off/on short term (usually 1-3 weeks) during this time for my asthma. My arthritis actually went into remission for 20 years and I didn’t need prednisone during that time! With PMR, I’ve had to take more long term doses for the last two years. Currently on my 2nd flare up of PMR. ☹️🥲
Still, it is a long time dealing with this medication and it did leave me with osteoporosis and thin skin!

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What doses of Prednisone did you take for asthma? My first dose of Prednisone was at the age of 32 for reactive arthritis. I had recurrent painful flares of reactive arthritis which were overshadowed by flares of uveitis which accompanied the inflammatory arthritis pain.

An ophthalmologist treated the flares of uveitis with anywhere between 60-100 mg of prednisone. My uveitis responded well to high dose prednisone and I could always taper off quickly in 3 to 5 weeks. I did these bursts of high dose Prednisone followed by a fast taper many times --- probably 35 times for flares of uveitis alone during a 20 year period.

I quickly learned that my painful flares of inflammatory arthritis responded the same way. I always had Prednisone which was prescribed for uveitis leftover so I self medicated any additional flares of reactive arthritis with bursts of Prednisone. I was probably doing Prednisone bursts 4-5 times per year. Each Prednisone burst was a month of Prednisone. The rest of the time I wasn't taking any Prednisone.

I was 52 when PMR was diagnosed in addition to reactive arthritis. I thought I could treat PMR with a Prednisone burst for a month or two. I did 30-40 mg of Prednisone and tried to tapered off in a month or two. That didn't work for PMR. I didn't understand PMR would required 1-2 years of Prednisone instead of 1-2 months. My rheumatologist clarified it and said PMR was treated with "long term" Prednisone. However, long term Prednisone for PMR was 12 years for me until Actemra was started.

I didn't have too many problems when I was taking Prednisone on a "short term basis" for uveitis. Prednisone on a "long term basis" for PMR was another matter and characterized by many side effects and medical problems.

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@dadcue

What doses of Prednisone did you take for asthma? My first dose of Prednisone was at the age of 32 for reactive arthritis. I had recurrent painful flares of reactive arthritis which were overshadowed by flares of uveitis which accompanied the inflammatory arthritis pain.

An ophthalmologist treated the flares of uveitis with anywhere between 60-100 mg of prednisone. My uveitis responded well to high dose prednisone and I could always taper off quickly in 3 to 5 weeks. I did these bursts of high dose Prednisone followed by a fast taper many times --- probably 35 times for flares of uveitis alone during a 20 year period.

I quickly learned that my painful flares of inflammatory arthritis responded the same way. I always had Prednisone which was prescribed for uveitis leftover so I self medicated any additional flares of reactive arthritis with bursts of Prednisone. I was probably doing Prednisone bursts 4-5 times per year. Each Prednisone burst was a month of Prednisone. The rest of the time I wasn't taking any Prednisone.

I was 52 when PMR was diagnosed in addition to reactive arthritis. I thought I could treat PMR with a Prednisone burst for a month or two. I did 30-40 mg of Prednisone and tried to tapered off in a month or two. That didn't work for PMR. I didn't understand PMR would required 1-2 years of Prednisone instead of 1-2 months. My rheumatologist clarified it and said PMR was treated with "long term" Prednisone. However, long term Prednisone for PMR was 12 years for me until Actemra was started.

I didn't have too many problems when I was taking Prednisone on a "short term basis" for uveitis. Prednisone on a "long term basis" for PMR was another matter and characterized by many side effects and medical problems.

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To DadCue,
When being treated for my asthma the doctors would normally give me an injection of a steroid, usually solu-medrol. Then the next day I would do either a 1 week tapered dose pack of prednisone, or start me on 60 or 40 mg prednisone to taper over the next month, depending on how bad my breathing was.
I only had one occurrence of conjunctivitis, when I was first diagnosed with the reactive arthritis and it was really bad at the time. My first occurrence of this arthritis lasted a year. I needed to go back to work, even though I had a slight limp that finally went away—-after that, it went into remission for 20 years!

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@jlo2252

To hopeinal,
Just to clarify, I was not on prednisone for 50 years! It was off/on short term (usually 1-3 weeks) during this time for my asthma. My arthritis actually went into remission for 20 years and I didn’t need prednisone during that time! With PMR, I’ve had to take more long term doses for the last two years. Currently on my 2nd flare up of PMR. ☹️🥲
Still, it is a long time dealing with this medication and it did leave me with osteoporosis and thin skin!

Jump to this post

I'm tapering again nut only down to 9mg so far this time. I've been hitting a wall when I get to 6 or 7. Just oredered some geri gloves from Amazon that I hope will keep me from looking like I've been run over by a train. lol

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@ekgilpin1

Has anyone else noticed the skin on their upper arms loose and wrinkly? I am 66 and my upper arms have no muscle tone, sagging and wrinkly skin. My arms look like that of a 90 year old. This change has occurred in the past year. My arms were not like this last summer. I feel embarrassed to wear short sleeves. I have always used hand weights in my workout twice weekly, so I know it’s not that. I guess it’s the prednisone. But I have been taking no more than 8 mg in the past year and now down to 3. Could this be the prednisone? And if it is, what are the chances the skin on my arms will tighten up again?

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I don't know but same here.

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@hopeinal

I don't know but same here.

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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.

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@jlo2252

To DadCue,
When being treated for my asthma the doctors would normally give me an injection of a steroid, usually solu-medrol. Then the next day I would do either a 1 week tapered dose pack of prednisone, or start me on 60 or 40 mg prednisone to taper over the next month, depending on how bad my breathing was.
I only had one occurrence of conjunctivitis, when I was first diagnosed with the reactive arthritis and it was really bad at the time. My first occurrence of this arthritis lasted a year. I needed to go back to work, even though I had a slight limp that finally went away—-after that, it went into remission for 20 years!

Jump to this post

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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