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Symptoms after you stop prednisone
I was diagnosed with PMR in April, 2023 and prescribed 15 mg of prednisone tapering monthly until completely off by May, 2024. Understandably, my previous osteoarthritis symptoms and pain returned in my knees and lower back. Over the last year, I presume that the prednisone masked that pain. However, when I tapered to 1 mg, my hand joints swelled (which is new), I have a trigger middle finger in my right hand, and I experience some discomfort in my shoulders in the morning. In June, 2024, I had blood work and my Sed Rate and C Reactive Protein results were in the normal range. Has anyone else experienced hand swelling after tapering off prednisone or other new symptoms (not reflected in your lab results)? When are these new symptoms concerning and how did you treat them?
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@csimmonds
"You answered some questions I have had about why doctors talk about hormone levels but don't check them."
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The real reason hormone levels aren't checked very often is because they fluctuate so much that it becomes somewhat meaningless to check them. A single lab test is only a snapshot on one day in time. For a cortisol level, it is especially difficult to interpret without knowing various factors like stress, time of day, and existing medications. My 8 a.m. cortisol level was only checked a couple of times. The endocrinologist said my symptoms were consistent with adrenal insufficiency. She wasn't surprised since I was on Prednisone for so long.
She offered to help me decide if I needed more Prednisone for adrenal insufficiency or not but she couldn't increase my cortisol level for me. She only said that I should not taper off Prednisone until my cortisol level improved. The only way for my cortisol level to improve was to stay on as low of a dose of Prednisone as possible and wait for my cortisol level to improve. If my cortisol level didn't improve on its own I would need to continue taking Prednisone.
She emphasized that I should not increase my Prednisone dose simply because a wannabe doctor on the internet told me to. I was reasonably sure I didn't need Prednisone for PMR because Actemra had PMR covered. Even so, my endocrinologist double-checked with my rheumatologist to make sure I didn't need Prednisone for PMR any longer.
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2 Reactions@dadcue Thank you. I see my rheumy in two weeks and this gives me information so I can ask good questions. I wonder if she has me tapering so slowly because I only have one adrenal gland. I don't know much about it. Prednisone is the only option for treatment we have discussed so far. It would be nice if I could not need anything. I have read some people who have been able to do that. I'll keep my fingers crossed.
@farnhamlaf1
Ask your dr abt Kevzara….its a biologic that has been successful for me getting off prednisone.
If you have not done so already, try Tylenol for Arthritis 2 at up to. 3 times daily.
@farnhamlaf1
I was diagnosed with PMR in March with immediate benefit from prednisone. After several months methotrexate was added with the goal of tapering off prednisone. However I was unable to decrease the prednisone and Kevzara was added. I think the methotrexate rather than the prednisone was responsible for my hair loss. I am now off both methotrexate and prednisone but I still have some pain in my shoulders and upper arms which is tolerable though hardly what I would wish for. My inflammatory factors (C reactive protein and sed rate) which were sky high when I was diagnosed are now within normal limits. What does that mean? Does one treat the symptoms or the blood tests?
@margedoc
Symptoms mostly. It depends on the doctor’s interpretation of your symptoms combined with labs for how much your starting dose is. You shouldn’t self medicate or adjust your dose without informing your doctor.
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1 Reaction@margedoc
Are you still on Kevzara? How long?
It takes several weeks to kick in.
Are you taking any OTC?
@tweetypie13
I've taken 3 doses of Kevzara so far and will continue it. No OTC except for occasional Tylenol which does nothing.
@dadcue
I wasn't planning to self-medicate but don't have a rheum. appointment till Jan. and just curious how treatment decisions are generally made with normal labs.
@margedoc
Unanswered questions…..how long between doses of Kevzara, which Tylenol?
My experience followed the following ……link below to read…
“ it can take up to 12 weeks (3 months) to experience remission (a period when symptoms are minimal or disappear).”
https://www.google.com/search
When in doubt abt. my body, strenuous exercise, activities, I supplemented with 2 Tylenol FOR ARTHRITIS…as suggested by my Rehumy. All worked well for me.
@elizabethannr
Any idea which blood tests are affected by the biotin?
I’ve been taking it for my hair loss/breakage even before PMR. Wish I knew about it.