Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
@csimmonds yes，and hair will grow back after you stop taking prednisone．
I hope I don't ever get to a point where I have to decide between pain and hair.
@csimmonds
Men face the problem of hair loss at an early age. It wasn't too big of a deal when I lost most of my hair. I know it isn't the same for women.
I used to think I had too much testosterone until my endocrinolgist said my testosterone level was actually low but near normal. My endocrinologist set the record straight about prednisone and said it interacts with a variety of hormones of the endocrine system. He said things like my insulin level was too high because of prednisone. I didn't know that insulin was a hormone.
My endocrinolgist highlighted the widespread impact that prednisone had on my body's hormonal balance. I was dumbfounded and said I didn't know that I had that many hormones. My cortisol level was more concerning at the time so my endocrinologist didn't explain all of the details.
I asked the endocrinologist why my hormone levels were never checked when I took prednisone The simple explanation was that it wasn't my rheumatologist's speciality. After I tapered off Prednisone --- then I got to find out how many hormones were out of balance.
Prednisone caused a slew of endocrine problems for me. As long as I needed Prednisone to control PMR --- there wasn't much an endocrinologist could do for me.
-
Like -
Helpful -
Hug
3 Reactions@dadcue
Thank you for your response. You answered some questions I have had about why doctors talk about hormone levels but don't check them. I have only one adrenal gland and it has a cyst on it that is not growing. I did see an endocrinologist about that to get an baseline on the size of the cyst. Some hormone levels were checked at that time but that was years before PMR and prednisone. I still have hair but mine used to be quite thick. I hope I go off of prednisone and my hair returns. Is it a good idea to have hormones checked after one goes off of prednisone?
-
Like -
Helpful -
Hug
1 Reaction@csimmonds My hair has been thinning as well and it is disturbing. I've never had so much hair fall out like this. I think I am starting to reverse it, I bought an infrared comb-style device from Sharper Image called Hairmax and you run it over your scalp for 8-12 minutes every other day. It takes 4 months to show results and I am at 3 months now and can see new hair starting to come back. It is a slow process. I was going to also take Nutrafol pills for hair loss till I saw how high the Vitamin A and Selenium levels are plus the Biotin levels and biotin can negatively affect any blood tests you may need so I decided to skip that. Fingers crossed!
-
Like -
Helpful -
Hug
1 ReactionMy Dr wants me off prednisone by Christmas. I have been on it for a year and no relief. I was also on methatraxate for 14 weeks with no apparent results.
I’m sore/stiff like a 7-8 in the morning when I start Tylenol. By late afternoon I have some relief 2/3. Comments??
@csimmonds Yes, the hair thinning is a known side effect of prednisone. Mine didn't thin until I had been on it for about a year. I took Biotin for awhile and that helped. But Biotin has an effect on blood test results so you have to stop taking it a week before a blood test.
-
Like -
Helpful -
Hug
2 Reactions@csimmonds
Your disease is likely what is causing your hair loss or at least that is what my rheumatologist believes. I was diagnosed with GCA in mid April and began shedding in August. I’ve been tapering from prednisone and am also on a corticosteroid sparing agent and I’m happy to report that my hair seems to be thickening. When I started shedding, I added horsetail plant drops to my daily diet as the horsetail plant has a high concentration of silica. I’m not certain this did the trick but there is definitely a noticeable change.
@elizabethannr Thank you for sharing your experience. I started prednisone last March and have tapered. I guess I expected I would have hair loss at higher dosage but it sounds like it has more to do with how long one is on it. I started taking Biotin recently. I had dramatic hair thinning one other time following going into septic shock. It grew back really curly--I looked like a Chia pet--then it gradually went to normal. Thank you for the information about the infrared comb--I may put that on my Christmas list.
@vbird Your information is helpful. I thought hair loss would happen at higher doses of prednisone. From responses I have gotten it seems it happens with length of time one is taking the drug.