Hair loss from PMR or Steroids?

Hi @pst, I think I had hair loss before I started prednisone for Giant Cell Arteritis. I've been off prednisone a few months now and my hair has come back. I didn't take any special supplements.

I’ve been on prednisone for little over a year now. About 3/4 into taking that med for PMR my hair started falling out like crazy. My dermatologist put me on Minoxidil 2.5 mg and within 2 months the hair loss stopped. My hair has never looked so healthy and thick. Here’s the negative: I have additional hair on my arms and other areas. Today we decided to drop back to a 1/2 pill a day and see what happens. The new hair growing in on my head is rather curly and I’ve always had straight hair. All very odd.

Thanks for the information. Interesting choice: gorilla or beach all..🥴

In 2017 I lost a lot of hair due to being ill. (Not PMR) My hair which had just been wavy before came back in like I had a perm. I theorize that the hair follicles being empty for a time got flattened and that changed the hair that came back in. Since I just got treated for breast cancer I was glad that they decided to not use chemo as I didn't want my hair to fall out all over and come back super kinky like an afro. As I am blond, it would look very strange. What a thing to worry about, right?!

I had a similar experience. Pain from Aug 2022 but no diagnosis till Jan 2023. I have this feeling that doctors don’t pay attention to—or don’t believe—old women complaining of pain.

@suzivester hopefully you have seen a rheumatologist. They can check for PMR or other conditions. Your family will not know what to look for I promise you.

@ncgal
I was diagnosed with PMR 15 months ago and was prescribed prednisone. The doctor did not once mention that it could cause hair loss, and i floolishly did not read that hair loss could be a side effect. My hair really was my crowning glory, and it was admired so frequently. I started out on 15 mg and after about a month i noticed that my hair changed texture, it make like dry fuzz and wa difficult to style, then i noticed so much coming out when brushed, or if i smoothed it down with my palm, it seemed to flood out in my hand. These symptoms gradually intensified and i was distraught, my hair is so thin now, i have about a third of the hair i had. I was already weened down to 1mg when i discovered prednisone could be the cause of hair loss. I stopped taking them and 6 weeks later i am still having hair loss, but the last few days i think it has started to turn a corner, and there is less hair loss. I have already bought a wig on amazon, by Haircube, its a long bob style and was only an incredible £22, my friends love it and say i look 15 yrs younger. Doctors should make patients more aware of the hair loss risk, as i would never in a millon yrs have taken prednisone had i known how significant the hair loss could be. I am woman aged 62 and recovery will be slow and not full, so i am now considering taking minoxidil or finasteride for the rest of days.

You’re not alone. Yesterday I got a pixie haircut after many years with long hair, and I have a plan to shop for a wig soon. After the initial shock and grief at losing this part of myself, I am becoming determined to have fun with this next phase. This month I taper to 7mg.

@joebloggs I can relate to your story. I am older--78-but had kept my thick hair when my peers had thinning. My hair was a feature I appreciated so I was really unhappy when I started losing it. I was diagnosed and started prednisone at that time. I didn't notice thinning hair until the last couple of months and I have tapered to 3mg. I started taking Biotin recently and if that doesn't work I will check with my dermotologist. When I had dramatic hair thinning after going into septic shock it came back really curly. I wasn't warned about hair loss and other symptoms but I think that is fairly common. Doctors don't want us to worry about something that doesn't happen to everyone.
Some people talk about PCP not identifying PMR. I guess I am just fortunate. While waiting to see a rheumatologist my doctor did tests to eliminate other possibilities. Also, her nurse practitioner mentioned that there is a condition that causes pain like mine in the shoulders and hips--she was right on target. My pain was never dismissed. The office even called me to see if there was anything else I needed. They didn't start prednisone because it would mask the symptom before going to rheumatologist. The problem is only prednisone would relieve the pain. This all happened a year ago--around a busy holiday season.

I began this journey to deal with PMR a little over a year ago. Started out on 10 mg of prednisone. I made it down to 4 mg, but had a flare when I went down to 3 mg. My Rheumy had me go back up to 5. Stayed on it until all the pain was gone. Have made it down to 4 again. My hair began to fall out very soon after starting prednisone. I had curley hair, so got it cut short. The curls hid a lot of bald spots. Tried the powders for a while but they caused redness and itching in my eyes, I have resorted to loose fitting berets and turbines. This allows me to have a little hair showing in the back and on the sides. The side effects of prednisone combined with other meds I have to take, have taken my curls ( what hair I have is now straight and baby fine), my voice ( can’t sing in my choir any more), and thinned my skin which causes terrible bruising if I bump something. Also my BP medication and the prednisone cause terrible swelling in my calves and ankles. I am thankful that the prednisone has taken the bulk of my pain and soreness away, so that I now can sleep. I hadn’t really slept for about four years. When I was diagnosed I was sleeping about and hour and 15 minutes before the pain woke me up. Up for a while to ease the pain and the back to sleep for an hour or so. Total sleep was about 4 hours a night. I am hopeful that I will be able to get off the prednisone and maybe my body will revert to the way it use to be. Thank you for listening to my issues and for understanding. Between the issues with PMR, Fibromyalgia, Osteoarthritis, and AFib, my daily life can be frustrating.