Prednisone and change in hair texture

Oh my gosh, this is interesting! I've been on prednisone for years, then terrible hand pain started but it was after second Reclast infusion for osteopenia. Hair now is extremely curly, baby fine and fuzzy, like a peach. Assumed it was the Reclast as the hand and finger pain started soon after. Appreciate any feedback please.
Good luck everyone with this challenge!

Gel definitely works for my curly/wavy/frizzy hair

I've always had a wave in my hair but now it is curly, wavy and frizzy. I spritz it with water through the day and crunch as well as work in some gel and finish off with a bit of hair spray. So far that work. I also have been using a hair strengthening shampoo Mielle with biotin, rosemary and mint. So far so good.

Hi Teri,

Curious, how did you know the GCA returned? My new rheumatologist thinks I should have the arterial biopsy after 8 years on prednisone, dose packs for flares, methotrexate and now, Kevsara. Have had bad headaches, (history of migraines), tmj pain and vision issues. Not really interested as it is extremely invasive but certainly scary and might set off another flare as I don’t tolerate pain well.
Good luck to you!
Karo

Hi @karo89135, my GCA returned earlier than I suspected. I had severe neck and head pain which I thought were muscle aches. I lost my appetite and experienced malaise. That's kind of like a gray cloud surrounding me where the thought of doing things is overwhelming. I also felt faint when I got up in the mornings. The pains in the head became tingling, numbing pains.
When I went for my Medicare checkup I asked the Nurse practitioner to order a CRP because I was "feeling things." CRP was elevated. The rheumatologist tried a Prednisone quick pack, but after the last dosage CRP had doubled so he put me back on 40 mg prednisone and brought up an Il 6 inhibitor which I have not taken yet. I'm down to 10 mg of prednisone now.

I had the temporal artery biopsy when I was first diagnosed and it wasn't painful. I did get general anesthetic.The incision healed quickly and I really didn't feel it.
GCA can result in permanent blindness so visual disturbance is serious.
Have you been on high doses of prednisone all these years?

Yes, 60 mg in the first year. Doctors said since I was being treated it wouldn’t be accurate. My sed rate was never over 40, they also decided since it wasn’t over 60, no point which is their marker. I gained 40 pounds, couldn’t sleep and ate everything available. I also have Fuchs dystrophy so wonder if that causes my vision issues.
I think I read here that after almost 8 years on constant prednisone..if GCA, it would have been treated.
During that time, I had 2 knee replacement with also a revision, Covid twice. My body doesn’t like any of that. Also, I’ve never been so sick since the vaccines. Such is life but I’m resilient.
Interesting you had general anesthesia for your procedure.
What was your CRP and Sed rate? Here, the sed rate seems to rule…Las Vegas. One CRP was over 1000 but was told lab error. The auto immune panel was positive but when each disease was looked at, nothing was positive. Thank you so much for your reply. I’m still trying to get more facts.
Karo

Sorry, forgot to answer your question.
Am on 8 mg a day, last flare was after Covid 2 months ago, methylprednisolone dose pack, then to 10mg, now tapering down. The Kevzara is in hopes of getting totally of prednisone because of osteoporosis risk. In hindsight I was basically forced to take high doses of prednisone for GCA because of the worry of blindness but didn’t realize it could return.
Thank,you again.
Karo

My first sed rate, after symptoms of PMR, then GCA, untreated for a year, was 128, I think. CRP might have been 16. My rheumatologist doesn't like sed rate, said it's a really old test. I didn't have any reaction to COVID vaccines and so far have not caught it.
Also PMR and GCA made me anemic, very fatigued. It's the anemia of chronic inflammation.
I read that GCA relapses in about 50% of cases.
My mother in law had GCA and my maternal aunt. I knew about it, but was surprised when I found out I had it. All our symptoms were differen, but in line with the symptoms described.

Thanks for mentioning about changes in hair. Initially at 40 mg my hair became very fine and thinner. As I reduced prednisone hair thickness came back but now my hair is very curly. To the point of friends kind of staring at my hair …like something is different 😊 I am still tapering so will see where I land on hair texture. Really odd to have 60+ years of thick wavy hair to looking like I have a perm. Admittedly compared to all the other side effects I experienced at least this seems more cosmetic 😊

So strange. I developed hair problems over the past 1 1/2 years on prednisone but didn’t attribute it to the prednisone. It got very thin, curlier and frizzy. I started massaging my head, using hot coconut oil treatment, and am letting it grow out because I couldn’t style it worth beans. It is almost long enough to pull back into a bun now which solves a lot of problems. It does feel thicker as I taper, currently down to 3 mg going to 2mg. I am using the tapering schedule shared in this forum that takes about 2 months to fully drop from one dose to the next.