Side effects of prednisone

Posted by jillkellyauthor @jillkellyauthor, Apr 24 12:09pm

Hi. Were any of you offered a list of side effects before you began your prednisone misery? Offered help with any of them? Or is this a gaping hole in the medical system?

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

Profile picture for megz @megz

The only thing I was told about prednisolone when I started on it was that I would need to very slowly reduce the dose because it suppressed adrenal function and the adrenal glands needed time to "wake up" as I reduced. When I got the script I was shocked to see the reduction schedule would have me on it for well over a year at best and possibly two years...if the reduction went to plan. Now I know it often doesn't.

The PMR pain was so disabling that I couldn't use the computer to research it properly till I was already on prednisolone and the pain was reduced. I did tell the doctor at the time that the pain was so bad and I'd slept so little in the two months prior that I was prepared to take anything that wouldn't kill me. So she prescribed and I grabbed it gratefully. Afterwards I found out about skin thinning, bone effects, etc. I don't blame the doctor for anything. She helped me regain functionality by prescribing it.

Jump to this post

I was told by the rheumatologist that I would have some jitteriness, a "little" weight gain (20 pounds now and counting), and possible mood swings. I asked if it would affect my Afib. She said not. It has. I've also had headache, vertigo, and a general feeling of "crummy" most days all days. I wasn't told about the diabetes possibility until I did my own research and talked to my PCP, who said "oh yeah, we should test for that." So far my A1C is normal. I know we have to advocate for ourselves and I do my own research but it seems fairly simple for the prescribing physician to give us a simple handout of prednisone side effects. It's not like they are a secret. I've also learned there are supplements, like chromium picolate, that can help with blood sugar and cravings. Of course, I do not expect allopathic docs to know about those.

REPLY
Profile picture for jillkellyauthor @jillkellyauthor

I was told by the rheumatologist that I would have some jitteriness, a "little" weight gain (20 pounds now and counting), and possible mood swings. I asked if it would affect my Afib. She said not. It has. I've also had headache, vertigo, and a general feeling of "crummy" most days all days. I wasn't told about the diabetes possibility until I did my own research and talked to my PCP, who said "oh yeah, we should test for that." So far my A1C is normal. I know we have to advocate for ourselves and I do my own research but it seems fairly simple for the prescribing physician to give us a simple handout of prednisone side effects. It's not like they are a secret. I've also learned there are supplements, like chromium picolate, that can help with blood sugar and cravings. Of course, I do not expect allopathic docs to know about those.

Jump to this post

I'm surprised that no sheet of side effects comes with my prescription bottles of prednisolone. Rather than from the doctor, side effects lists are usually given at the pharmacy. Like you, I've looked most of it up myself and many people wouldn't bother.

The way we individually react to prednisone is different with a lot of variables like diet and activity levels, pre-existing conditions and other medications we're already taking, so the list of possible side effects would be very long.

Weight gain is not inevitable. I eat strictly low carb/sugar, high protein and no processed food or gluten, a dietary change I'd made to lose weight shortly before PMR struck. I haven't gained a pound in (almost) two years on prednisone, and blood pressure and blood tests are all good. But without dietary changes to mitigate the metabolism changes caused by prednisone - which messes with the digestion of sugars and fats and sends strong hunger signals even when our body doesn't need food - I'd have gained weight, no doubt. I expect dietary advice isn't given because either the digestion changes prednisone causes aren't fully understood by doctors or most people aren't willing to change eating habits.

REPLY
Profile picture for megz @megz

I'm surprised that no sheet of side effects comes with my prescription bottles of prednisolone. Rather than from the doctor, side effects lists are usually given at the pharmacy. Like you, I've looked most of it up myself and many people wouldn't bother.

The way we individually react to prednisone is different with a lot of variables like diet and activity levels, pre-existing conditions and other medications we're already taking, so the list of possible side effects would be very long.

Weight gain is not inevitable. I eat strictly low carb/sugar, high protein and no processed food or gluten, a dietary change I'd made to lose weight shortly before PMR struck. I haven't gained a pound in (almost) two years on prednisone, and blood pressure and blood tests are all good. But without dietary changes to mitigate the metabolism changes caused by prednisone - which messes with the digestion of sugars and fats and sends strong hunger signals even when our body doesn't need food - I'd have gained weight, no doubt. I expect dietary advice isn't given because either the digestion changes prednisone causes aren't fully understood by doctors or most people aren't willing to change eating habits.

Jump to this post

I get several sheets of paper about side effects every time I pick up my prednisone prescription. It is not very well written. It lists the major side effects plus a bunch of others that seem random. My doctor orders labs before every visit and side effects have showed up there, especially when I was on higher doses. My blood sugar was running about 100, which is on the edge of being pre-diabetic, before I got PMR and started prednisone. It's gone down 10-15 points, into solidly normal range. I gained 12 pounds on the higher pred doses but have lost 7 or 8. That's partially due to dietary changes I made to counter the slight rise in cholesterol on prednisone and big increase on Kevzara. I never was overweight. The side effects of prednisone have been mild so far compared to methotrexate and Kevzara.

REPLY

I don’t recall my rheumy discussing side effects but that was 6 months ago and I’ve done a lot of research, in the meantime. I can’t get off prednisone fast enough and tapering 1 mg every 2 weeks as per the doc. It hasn’t helped imho. Right now I’m on 4 mg. I’m having some hair loss, heart palpitations etc which I’m trying to deal with (going gluten free (mostly) and trying to not eat too many sweets (which I’m not inclined to any). I was on hydroxychloroquine for a month but with the hair loss and no relief I had it up.

REPLY

Question about side effects of Prednisone. 63 year old male. Diagnosed in April 2025, started on 15 mg around May 4th. Tapered to 12.5 mg after a month with small amount of pain/stiffness, then tapered to 10 mg after 3 weeks, also with minor pain/stiffness. I am on week two of 10 mg and notice a few side effects of Prednisone such as thin skin, a generally weird feeling like I am not in control of my body, fatigue, etc. Yesterday on a hike I found that I had anxiety when driving on a cliffy- type of road. Let me explain: As I was driving to the hike (Colorado--Mountains!) I had a cliff on the driver's side of the car. This typically does not bother me nor does a reasonable exposure to heights when hiking or skiing. In fact I have been a skier and climber for over 50 years. I would not say that I love "exposure" (as it is called) but usually deal with it quite easily. Yesterday however, when driving I had the typical visceral twinge with the exposure along the driver's side of the car. It was not just a twinge but more like an electric shock in my pelvis and legs. It was clearly related to the cliff on my side of the car because the exposure I was experiencing would come and go and the "twinges" would follow perfectly with the "stressor" of the cliff as it came and went from my side. I was wondering if anyone else has had a lower tolerance for heights or stressful events while on prednisone. My hypothesis is that the adrenals are not operating on their own with the right secretion of cortisol, adrenaline, etc. In other words the prednisone alone is not enough to abate the stress symptoms of exposure to heights in this case. Any thoughts or experience or references on this are welcomed.

REPLY
Profile picture for petermccarville @petermccarville

Question about side effects of Prednisone. 63 year old male. Diagnosed in April 2025, started on 15 mg around May 4th. Tapered to 12.5 mg after a month with small amount of pain/stiffness, then tapered to 10 mg after 3 weeks, also with minor pain/stiffness. I am on week two of 10 mg and notice a few side effects of Prednisone such as thin skin, a generally weird feeling like I am not in control of my body, fatigue, etc. Yesterday on a hike I found that I had anxiety when driving on a cliffy- type of road. Let me explain: As I was driving to the hike (Colorado--Mountains!) I had a cliff on the driver's side of the car. This typically does not bother me nor does a reasonable exposure to heights when hiking or skiing. In fact I have been a skier and climber for over 50 years. I would not say that I love "exposure" (as it is called) but usually deal with it quite easily. Yesterday however, when driving I had the typical visceral twinge with the exposure along the driver's side of the car. It was not just a twinge but more like an electric shock in my pelvis and legs. It was clearly related to the cliff on my side of the car because the exposure I was experiencing would come and go and the "twinges" would follow perfectly with the "stressor" of the cliff as it came and went from my side. I was wondering if anyone else has had a lower tolerance for heights or stressful events while on prednisone. My hypothesis is that the adrenals are not operating on their own with the right secretion of cortisol, adrenaline, etc. In other words the prednisone alone is not enough to abate the stress symptoms of exposure to heights in this case. Any thoughts or experience or references on this are welcomed.

Jump to this post

I think you're right. I've tapered over the past year from 60 mg prednisone down to 2, to treat GCA and PMR. As I have gotten below 10, I've had occasional days where I felt minor anxiety, fatigue, or depression. I've read it's common to feel some anxiety when tapering prednisone. I don't have any references other than Google. It sounds like your body wanted extra cortisol to deal with the stress of the exposures, but it didn't get it, so it responded with anxiety. It's like pressing your foot on the gas pedal of a car and not getting any response.

What is your taper plan going forward? It sounds like you might need a slower taper if you're feeling some pain and stiffness, plus the anxiety indicating that your adrenals are being nudged to become active again. Also, you really haven't been receiving treatment for very long. I think for most people it takes at least 1 - 2 years for the PMR to burn itself out.

REPLY

The paperwork we might receive from the pharmacy is not proactive in
the sense of telling us how to avoid the risks with prednisone.
I researched the common complaints and set up my own program.
My rheumatologist and PCP did not mention the elevated cardiovascular
risk associated with systemic inflammation. My cardiologist was aware and
said my borderline lipids and PMR suggested going on atorvastatin.
I monitored my BP at home and bought a glucose meter as well.
I cut down on alcohol and got stricter with low glycemic Mediterranean
diet. Once we feel the prednisone is helping it’s time to stay active.
There are antinflammatory supplements we can run by our care team.
Vitamin D, calcium magnesium antacids and a Dexascan are a good
start. I chose turmeric, dark chocolate and still take melatonin at 3 years after
prednisone. Be proactive and research for your self. This group has a wealth of experience.

REPLY
Profile picture for jeff97 @jeff97

I think you're right. I've tapered over the past year from 60 mg prednisone down to 2, to treat GCA and PMR. As I have gotten below 10, I've had occasional days where I felt minor anxiety, fatigue, or depression. I've read it's common to feel some anxiety when tapering prednisone. I don't have any references other than Google. It sounds like your body wanted extra cortisol to deal with the stress of the exposures, but it didn't get it, so it responded with anxiety. It's like pressing your foot on the gas pedal of a car and not getting any response.

What is your taper plan going forward? It sounds like you might need a slower taper if you're feeling some pain and stiffness, plus the anxiety indicating that your adrenals are being nudged to become active again. Also, you really haven't been receiving treatment for very long. I think for most people it takes at least 1 - 2 years for the PMR to burn itself out.

Jump to this post

Good analogy with the gas pedal. My taper plan is to follow the most common one but we will see how that goes. Another 2-3 weeks on 10 mg will give me a month on it and then I will taper to 9 mg for a month and so on into the single digits. Hopefully I can do a mg per month. Time will tell. I am following the tapering plan that is considered the international protocal set in 2015 but as we all know that is highly variable. No flares as of yet for me but some soreness and stiffness at quite a low level is common according to folks on this chat room who have responded to my question of "just what constitutes a flare?" I pretty much have hurt in some fashion or location on my body my entire life. I have EDS (Ehlers Danlos Syndrome). Not a "bad" case of it but it has informed most of my pain quotient my entire life, I now realize. Currently my pain is not too much to worry about and is below a level one. I am just highly sensitive (aware) of what my body is doing at any given moment. I will remember fondly the first month of being on 15 mg (my start dose). Amazing! I have never felt that good in my life. I could do any amount of work or activity and not have a lick of soreness or stiffness during or after.

REPLY
Profile picture for petermccarville @petermccarville

Good analogy with the gas pedal. My taper plan is to follow the most common one but we will see how that goes. Another 2-3 weeks on 10 mg will give me a month on it and then I will taper to 9 mg for a month and so on into the single digits. Hopefully I can do a mg per month. Time will tell. I am following the tapering plan that is considered the international protocal set in 2015 but as we all know that is highly variable. No flares as of yet for me but some soreness and stiffness at quite a low level is common according to folks on this chat room who have responded to my question of "just what constitutes a flare?" I pretty much have hurt in some fashion or location on my body my entire life. I have EDS (Ehlers Danlos Syndrome). Not a "bad" case of it but it has informed most of my pain quotient my entire life, I now realize. Currently my pain is not too much to worry about and is below a level one. I am just highly sensitive (aware) of what my body is doing at any given moment. I will remember fondly the first month of being on 15 mg (my start dose). Amazing! I have never felt that good in my life. I could do any amount of work or activity and not have a lick of soreness or stiffness during or after.

Jump to this post

I followed your taper plan. had a flare at 6 that sent me back to 8 or 9. All in it took me just about one year to finish. Near the end my rheum put me on my final 1mg taper at every other day for the final two weeks because my blood test showed excellent (low) inflammation levels. I finished a week ago and feel better now that I am off the prednisone . And I have resumed coffee at half a cup per day. Actually feeling pretty darn good. Cheers.

REPLY

I have been on prednisone for 6 weeks, now, for PMR. Absolutely hate the stuff! I started on 15, was upped to 30, then down to 20 and now on 15, and supposed to go down to 12.5 after 2 weeks back on the 15. I still have pain in shoulders and butt/tailbone, as well as back of legs, so not sure if going down that low is the right thing to do at this time, due to the pain. However, I'm thinking having the pain may not be as bad as the side effects of the prednisone???

I feel reasonably well until I take the prednisone in the morning. Then, about an hour later, I feel like something crawled in my body and won't get out. I am shaky, irritable, my front teeth ache, and my neuropathy/numbness in my legs increases to the point that I have trouble walking from the numbness. My eyesight gets blurry, and my urine always smells sweet from the rise in sugar. Besides the insomnia, I also feel more depressed after taking the prednisone. This is indeed a nasty cure for a disease that has no cure, only a possible eventual remission!

REPLY
Please sign in or register to post a reply.