Hair Loss due to PMR

[remission]

I have been taking collagen & iron in an attempt to slow down the hair falling out, but doesn't seem to be helping; I've been doing this for about 3 months now. Has anyone out there used a laser hair helmet device with any success? or for that matter anything else work for them, I know it's difficult as everything has to fight the damage the steroid prednisone does. Thanks

[SnazzyD]

If the hair loss is due to the body’s reaction to having a serious systemic illness, which can happen with any illness, it’ll only grow back in its own sweet time. It is common and often delayed to months after diagnosis. If it is due to the alteration in the body’s balance of cortisol it may take a while before the dose gets low enough to grow back if you are sensitive. So, I don’t see it as damage as such, just the body’s reaction to high cortisol levels. If someone is very stressed with permanently high cortisol, hair loss can be a symptom; it’s just what cortisol does. Personally I went nearly bald after 5 months, then it grew back. Then it had another go, I think due to the shock of adrenal insufficiency, and came back on line a year to 18 months later. I’ve had various mad scientist hair in between. It sorts itself out in the end but I don’t think you can force it.

[remission in reply to SnazzyD]

thanks, I shall try and stay positive and hope the hair loss slows down..thanks again

[jinasc]

Try Folic Acid, but only after you have cleared it with GP.

[Daffodilia]

My hair loss stopped when got to lower dose of pred - now on 6 mg

[Fieldofdreams]

Dear remission, I have had hair loss too and share SnazzyD's advice. I have a range of lovely wigs which whilst still making me a feel a little bit self conscious when working not at the moment of course, I do get a boost as people say how nice my hair looks. I then have a turban when I have to stay overnight anywhere with work as it gets a bit hot to wear all the time. Good luck. Wigs are the new good hair do! xx

[Tahiri in reply to Fieldofdreams]

I bought a couple of wigs too. My hair has been thinning rapidly , and it was depressing me terribly as I’ve always had really thick hair. I tried black castor oil - a leave in conditioner) but it looked awful until I washed it out. I think it has slowed down the hair loss , but the wigs are so realistic, that I don’t think that anyone would know that it’s not your own hair. They are quite glamorous, if you choose a natural style. I don’t need mine just yet , but am wearing it for a few hours daily to get used to it. It only weighs 4 oz and is very comfortable. Nevertheless, I hope I won’t have to use it constantly. There is nothing more depressing than the hair loss , on top of the illnesses.

[remission in reply to Tahiri]

couldn't agree more.....like we needed that added on to what we are already dealing with....thanks for ur comments

[Fieldofdreams in reply to Tahiri]

Tahiri, I agree, getting used to a wig is quite a task. I had long thick blonde hair and now it very thin, snaps off at about 3 inches and is like brillo pad on a good day. So I have a short blonde wig which I actually like how it makes me look but when working it can be hot and I have nearly done a Mo Mowlem a couple of times! But, my confidence is so low that I cant possibly go out with my own hair. Hope it wont be forever though. Good luck with yours. FOD x

[remission]

thnaks everyone for ur responses

[Gail10US]

Could you give an update please? I am really afraid.

I have had PMR for 4 years but did not experience noticeable hair loss until about 6 months ago. Then one day I noticed a bald patch that had been hidden under my long hair. Diagnosis alopecia. I now have three patches. I had the steroid injections and that did not help. Patches are larger than before. I was hopeful at the beginning that this would be temporary, but now I'm suddenly losing hope - especially since this week I felt the burning and sensitive hair follicles again and fear I am about to lose even more.

I have been on very low dose prednisone (3mg) so it is not from steroids. The onset of the alopecia coincided with a 4 month flare of PMR.

Did the helmet help? Did you have alopecia (patches of loss) or just overall thinning?

Any insight would be so greatly appreciated!

[remission in reply to Gail10US]

Okay, I knew early on from this forum that with the immune system the way it is with PMR that it will attack the hair folicals causing hair loss, so I started taking a folic acid, collagen with my tea in the morning and then using minoxidil. ..now I realize once u start on minoxidil it’s a deal for life, so you need to know that going in....but I’ve been in this for two years now and down to 3 mg prednisone and yes I have hair loss, no patches, and people still tell me my hair is thick, I notice the difference frm what I had, but happy that I still have a considerable amount of hair.....

[Gail10US in reply to remission]

Thank you so much for your reply. I'm going for another steroid injection next week, but may consider the minoxidil and supplements too and will discuss with doctor. It really helps to talk to someone who has been through this.

[remission in reply to Gail10US]

I know, I felt so lost when my hair started falling out all over the place, so I was some grateful to hear anything that offered hope......as I say, I can’t confirm any of the things I did worked, but the hair stopped falling out and so to me it was worth it...personally, I think it ws a combination of factors, the folic acid, collagen and I used only half the amount of the minoxidil that it said I should use....contact me anytime if you want to talk...I will be here for you