PredniSONE and losing my hair

How interesting to find this site! I, too, was diagnosed with temporal arteritis on February 29 (no more leap years for me!). Because I was already blind in one eye (had no idea) and losing sight in the other eye, I was put on 100 mg daily of prednisone. I had no idea of what I was in for. Since that time I have been able to taper down to 42.5 mg daily, but I don't think I've missed a single side effect. Horrific headaches. A 25-pound weight gain so rapidly it was unbelievable, moon face like I've never seen, was thrown into diabetes right away. My blood pressure went haywire, my cholesterol went haywire (had never had problems with either of them). I think I agree that the most debilitating has been the muscle weakness and leg cramps. I have no balance, have had 3 serious falls. The latest is my skin is breaking down and I'm losing my hair. What hair I have is like somebody held a match to it and frizzed it. I'm short of breath, keep trying to exercise and it's like climbing a high-altitude mountain. Swelling of my feet to where I can wear NO shoes except for Crocs in about three sizes bigger than I ever wore in my life. Now I have a liver problem, am being sent to an "ultra-specialist" for this. The good news is that my remaining eyesight has been stable, and I am very thankful for that. I have been assured by multiple specialists that I would have been blind by now if not for the prednisone. Although it is very difficult for me to read by the time night arrives, and that was my chief "hobby." The other part of this whole sad saga (ha) is how much money my husband and I have been out this year -- unbelievable. Lab tests or doctors every single week and sometimes every single day. I am now under the care of 5 different specialists (ophthalmology, rheumatology, cardiology, hepatology and internal medicine), and it has been so incredibly expensive. This is even with fairly decent insurance. I have been told that I have at least six more months to go on this treatment, and then possibly another year on methotrexate. Thank God I have NOT experienced the depression that seems to be a common thread here. I am trusting in Him to get me through this itme and to come out on the other side completely cured. But it does get difficult in the meantime.

Hi, I was on Prednisone for a little over a month for Crohn's disease. I had minor side effects while taking it: couldn't sleep, no patience, dehydrated, dry eyes. It is the side effects from AFTER stopping prednisone that concern me. I''ve been off Prednisone for 3 weeks and I think I am losing my hair and getting acne-that I didn't have before or during taking Prednisone. Anyone experience side effects that started after stopping the med?

Hello everyone and let me say I am SO GLAD I found this site. It is good to read what people who've gotten off the Pred. have to say and that hopefully someday I will maybe be somewhat the person I once was. It's been really hard feeling like I will never be the same again and even forgetting what I was like before! I've been on Pred. since July, started at 40 for a month then had to go up to 60 for like 5-6 weeks during which time I totally had my worst effects. This has been for a pseudo-tumor in the apex of my right eye which causes double-vision due to interfering with the movement of the eye. At my worst I had terrible insomnia, moon face, dowagers hump, extremely swollen legs feet and joints, constant pain, and general paranoia and anger and frustration. I've been decreasing since then and am now down to 5mg/day, but even though the feet/leg swelling is better and the dowagers hump is not as bad, it is still there plus moon face and acne continue, plus psychological effects just seem to get worse and worse even though the dose is down. Another thing which just started is I AM LOSING MY HAIR. It is coming out in clumps every day and my Dr. says I won't be all the way off Pred. till the end of January and I am afraid I won't have any hair at all left by then! (Except the dang hair on my face which is extra thick and dark compared to "before.") I have to say it is just the worst when you are already ill and then the "medicine" you have to take makes you feel like a joke of yourself in such a very public way!!! Anyways, just wanted to add the thing about the hair loss since I can't find it mentioned anywhere. Thanks again for your words of encouragement, looks like I won't be all the way better till next fall but at least that's something to hang onto in having some belief that these things are not permanent!

Emily