Has anyone tried Rogaine, (minoxidil), for hair loss? I was diagnosed withPMR/GCA in January and put on 40 mg of pred, now at 18.75, and hair loss seems to have increased the last month or so instead of decreasing.
I saw a dermatologist last week who diagnosed “tellogen effluvium “, hair loss caused by trauma, illness, etc. she suggested the Rogaine to stop the loss and then hopefully my hair will one back once I’m better and on less pred.
Just wondering if it’s worth it since I’ve read once you stop it the new growth will fall out. I’m getting so depressed and becoming a recluse who doesn’t want to go out.
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Mstiles
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So sorry you are struggling with hair loss, its very depressing .....
I was also on 40mgs of steroids and didn't get below 20mgs for I guess about two years, however, it did start to grow back once under that. Another 18 months on and my hair is as thick as it was - but curly! I have just made the decision not to bother straightening it anymore and embrace the curls. (I wear my hair long)
So there is certainly a good chance your hair will come back, but I appreciate how difficult it is - I had also put loads of weight on so felt very miserable and unlike me, I have also lost the extra weight too, but that took a year to come off.
Please be kind to yourself the condition itself is miserable and so are the steroids, there will be light at the end of the tunnel , honestly.
Please remember, to our loved ones we are more than our physical, they love us and it must be painful to them to see us struggle so - even if we feel not ourselves and unlovable, you are loved and you need to be extra kind on yourself and give yourself time to heal.
See your GP, investigate the rogaine and make an informed decision, discuss your feelings with your GP, maybe chat with someone who has been through this - and try and find a little something in each day to bring you a little pleasure - if you can.
The hair loss that you are experiencing sounds more like Alopecia. Hair comes out in clumps once the illness and or period of stress is less. My father experienced it following an intense episode of work stress. It got better, I believe that it is self limiting. It is very upsetting and I can empathise with feeling like you don’t want to see anybody. The illness is like that, never mind the weight gain and hair loss, it’s exhausting being social.
I would try the stuff the dermatologist recommended. I would also consider getting a good haircut. My hairdresser made mine look a lot better. She cut it in layers and for a while I didn’t comb it. I tried to avoid stressing it at all. It seems to be getting back to normal, although, no longer straight.
See your GP about your depression. When you are depressed all your problems are magnified and your creativity seems dormant. That to me is worse than the physical changes. X
I was diagnosed with the same kind of hair losd. My dermatologist recommended biotin supplements. Rogaine, which had been great for my thinning hair before PMR wasn't a great help against the effect of Pred/PMR. I can't say the biotin helped but my hair started growing back around 8mg. I'm happier with my hair now than I've been for years before PMR.
Thanks Hindags for sharing your encouraging experience.
I’m hesitating with the Rogaine because I’ve read that when you first start it temporary hair loss can occur and also when you stop it. Did you experience this?
I am sorry you are having problems with hair loss, it’s very upsetting. I don’t have any advice really but just wanted to say about four months after prednisolone treatment started for PMR I experienced a lot of hair thinning, luckily I had a lot to begin with but it did worry me. Fortunately after several months it seemed to suddenly stop and now my hair is as thick as ever. No help but just wanted to say that hopefully the hair loss will stop for you as it did for me and I understand how you feel at the moment. I know you have have thyroid issues-could that be contributing?
The thyroid is another possible cause as my levels are not out of range but trending towards hypo. I was hyper last fall and took medication for it. My doctor recommended either Thyrocsin or a low dose of Naturthroid. Haven’t added that yet.
Hello, I had a massive shedding of hair about 5 months after starting Pred when I looked moth esten. Since then have had a couple of minor sheddings that just make my hair a bit flyaway with no bald bits. I’ve seen hair and skin shedding many times over the years in those with systemic illnesses, lagging behind the start of the actual condition.
It isn't unusual for hair loss due to illness to only become obvious about 6 months after you are ill and start treatment - which would fit with what you describe. I know it is hard - but be patient. My daughter has a set of wigs and has great fun with them - it is obvious they are wigs, ranging from red to as grey as I am!
Bear in mind that even topical drugs can have side effects - and one for minoxidil is growth of facial hair, as if there wasn't enough of that with pred! It ISN'T a permanent solution - it takes time to work and stops when you stop using it.
Yes, Rogaine has worked for me. It's not expensive if you buy generic. And yes, you have to continue using it... but that's a small price to pay to keep your hair.
That seems to say that a short term of pred actually improves hair growth for people with alopecia areata. But that's not the same disorder as pred hair loss. Never mind, I really don't care, just mildly curious.... i always want to know why. I'm still a three year old at heart!
Me too, HeronNS. Me too. Always want to know why. Need to understand. It is who I am. Sometimes annoys others. Sometimes exhausting for me. Do t think it will change until dementia sets in.
To clarify, I've used rogaine for quite awhile, long before being diagnosed with PMR. It took about six weeks to work. I'm currently tapering from 40mg to 15mg with no hair loss while continuing with rogaine. Of course, there are no guarantees, I'm just stating my experience. I wish you luck!
I did get a bit of hair loss at first....but then lots of regrowth. I can give you more details later. My hairline had been receding. It filled in. That was the androgenic hair loss being replaced. The Pred hair loss was different, a general thinning. I'm back to rogaine now. Still taking biotin too .
My hair has become very thin so i decided to go shorter i wish i hadnt it looked worse couldnt do anything with it so im growing it again. Not long just longer. My hair has always been dead straight but a few yesrs ago it went curly which i really like i can only guess it was due to one of the magical meds including steroids that caused it to curl. It was a lot thicker then now although curly its got no body. I hv started using a shampoo in a black bottle forget what called it has caffeine in it its expensive but i dont think i am losing as much hair since starting to use it. It is for hair loss. I will let u all know how it goes. But im still on 50 mg steroids was 60 so not expecting a miracle quite yet. I do fancy getting a wig but i suffer with the heat really badly so dont think i would cope with one. Hv also thought of having a curly perm not like old ladies although i am one 67 but a nice ond it would make it look thicker what do any of u think. I hv had one before but my hair wasnt as layered as it is now. Well enough of my rambling hope u are all coping thanku for sharing on this group i hv only been
on here a very shory time but love it it has really helped me feel almost normal lol god bless u all
My hairdresser advised me to not have perms whilst on pred as the chemicals would be too harsh and it doesn't always take. I have had my hair cut shorter and have it cut every 6 weeks
I think spending the money on a really good cut would be better. As Koalajane says, the chemicals aren't good for your hair. My mother was never on pred but her hair was in an awful state - until I suggested she stopped perming it. The difference was amazing. Once you start it is like colouring - you have to keep doing it or it grows out.
Thanks hindags, I was thinking that if I started with the Rogaine and it initially caused MORE hair loss it would be pretty devastating. Hard to figure out what’s what. The dermatologist said not alopecia but the “efflvium” caused by illness, trauma or medication. My hairline hasn’t really receded, just thinned. I’ve also got a lot of breakage so lots of shorter strands.
Do you use the foam or the liquid? Do you find it a hassle to apply it twice a day?
There are 3 phases of hair growth. Anagen which is active growth. Catagen which is a resting phase and telogen which is shedding. People who can't grow their hair long have a shorter anagen phase than those who grow long tresses. Because the hair follicles cycle at different times there is normally no obvious change in hair thickness. In animals who moult in summer a large number of follicles enter telogen at the same time.
Alopecia is the medical name for hair loss. There are 3 recognized forms. A areata where the hair falls out in clumps. A totalis where all the scalp hair sheds and A universalis where all body hair sheds. These are auto immune conditions and the hairs do not form properly and have a characteristic appearance prior to shedding. Minoxidil does not help A areata etc but can help telogen effluvium which is accelerated hair loss. It was developed from a drug originally used to treat high blood pressure. It is a calculator and probably works by increasing blood flow to the hair follicles.
My dermatologist said “tellogen”, not alopecia, as I haven’t had clumps come out and body hair seems about the same except for a little bit of bushy pred eyebrows. I’m 75, but still vain about my hair, so that could be a factor in all this.
My hair is only just growing back after Chemo, my hair became very thin when l was high dose Pred & was started on Methotrexate, which got the blame initially!
I was then diagnosed with Breast Cancer & lost all my hair following Chemo, it has really struggled to grow back, l’ve taken supplements, tried Trichology Ranges of Shampoos/Conditioners/Serums but the front remains very thin & wispy, so l still sport a wig & in all honesty l don’t mind as it looks so good.
My Dr & I discussed Minoxidil but as I’m already on Blood Pressure l was wary of the side effects but the Cancer Diagnosis rather put pay to me worrying about thinning hair as suddenly l had none!
But hair is important & l can still even get a bad hair day with the wig wanting to do its own thing! 🙆🏻♀️
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Is there a point in Pred reduction when I could see less hair loss and less weight gain?
