Side effects of prednisone

Posted by jillkellyauthor @jillkellyauthor, 5 days ago

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?

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@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.

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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.

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@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.

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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.

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@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.

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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.

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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.

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