I'm down to 4.5mg prednisone per day and my hair is still falling out! 
Has anyone had any luck with Rogaine? I'm afraid to try it as my hair loss doesn't seem to match up with the pictures on the box. Not only do I have thinning on top of the scalp but also the back of my head...pretty much allover.
Any help is greatly appreciated!!!!
I was diagnosed last Dec. Am at 10 mg now. I've lost a lot of hair. Luckily I started out with thick hair.
I developed some postmenopausal hair loss and have used Rogaine, 5%, liquid twice a day for 7 years, as prescribed by a dermatologist. This is actually the male dosage and regimen. It has been very successful.
Since about two months into Pred I started losing hair again and have thought that the Rogaine just couldn't fight the effect of Pred.. But lately I'm thinking that it is still working. Where I have been using the Rogaine, on the top of my head, at temples and forehead, I seem to have retained more hair. This makes the hair loss less noticeable.
I called the manufacturer of Rogaine a few weeks ago to ask if there was any research on whether Rogaine was a hair sparing agent for people using Pred. The answer was, "No". I also reviewed the latest data on Women and Rogaine.
After the conversation I decided to use the foam for men but only once a day. Four reasons.
First, the men's formula is available at a much lower price than the women's at this time, at warehouse prices.
Second, I could see that the thinnest areas of my hair are on the sides of my head and back of the crown where I hadn't been using Rogaine.
Third, I was told when I first started Rogaine that Rogaine can reinvigorate dying follicles, but it can't bring dead ones back to life. I'm concerned that given my history with postmenopausal hair loss, if I don't treat my follicles while I'm in treatment for PMR, I'll lose them and the hair won't grow back after I stop Pred.
Four, only once a day because research has demonstrated that twice a day is no more effective than once a day for women.
Coincidentally I have an appointment with my dermatologist tomw afternoon to have her look my head/hair and to discuss this plan. I'll let you know what she says.
I have lost hair, particularly, while I was on Medrol - it started growing back in even before I stopped taking it and is all back to normal even though I have never stopped taking steroids, just a different form.
Hi Bonnig,
Try Chia seeds. I have read you can have up to a table spoon a day, but myself and my husband wouldn't have anymore than one or two teaspns sprinkled on breakfast cereal (husband)- me mostly an egg on toast, and maybe over salads etc., daily. I make LSA - Linseed- sunflowerseeds-and almonds all ground together and I now add chia seeds to this.
I am 69 and have had pmr now for 3 1/2 yrs. and take 2 to 3 mgs aday of prednisone. I feel that life is amost normal, sometimes I may feel tired so will have a rest. Sometimes forget to take prednisone, and feel I am not far from the end of Pmr. It has been a long journey but feel excited now as there isn't really anything that I can't do -- from not being able to do a thing.
My husband doesn't have pmr but his hair was getting quite thin so I suggested he have Chia seeds too. My hair was getting thin but now both my hair and husbands is really quite thick. Chia seeds have worked for us.
All the best and look after yourself. Give Chia seeds a go. 👍🙂
I will definitely ask my dermatologist about chia seeds. She recommended biotin, 2.5 grams per day. The hair I have seems healthier but it's still coming out. She also recommended finasteride (propecia) but I like the idea of chia seeds better.
What is there in chia seeds that stems the loss of hair. I keep thinking of chia pets and Mr Potato Heads that grow "hair". lol
Hi Bonning. It seems such a strange thing PMR and the associated medications, in my case my eyebrow fell out about four years ago and completely disappeared doctor said it was stress . When I was diagnosed with PMR in February and I was put on 20mg of predisolone it completely re grew , as I've tapered down its started to fall out again. One of the down sides of this is that the automatic passport machine doesn't recognise me anymore !!!!!!!
Oh the trials and trivulations of PMR . Hope you manage to find something that helps.
66 Mac
Did he check your thyroid function too? Losing eyebrows, especially the outer half, is typical of thyroid problems apparently.
Yes I asked my doctor the same question at our last consultation , and he said from all the blood tests I've had , my thyroid function was fine .
I was (still am ) worried that the two markers that they test In your blood for swelling are not particularly high and the only reason that PMR was diagnosed is that i was able to lift my arms above my head again and move properly when prescribed prednisolone 20mg ,when I've read everyone else's stories on here it seems that my symptoms are mild compared to others . PMR LITE !!!!!!!!
The other worry I have is that I'm an active person ,walking ,cycling etc I eat good food ,don't drink too much but I've put nearly 15 kg on since I've been on the prednisolone , even though nothing has really changed.
Still thinking about asking doctor to refer me to the rheumatologist or pay for a private consultation ( even though I've paid plenty in to the NHS pot ! ) just to try and clarify the diagnosis .
You might ask him what your thyroid numbers are, even though he said they are fine. Medical opinion has changed about what is "fine" and whatever that "fine" number is can be different from person to person. Thyroid function is critical for so many things...fatigue being high on the list.
For the weight problem - try cutting carbs drastically. It has worked for a lot of us - I can only lose weight at under 25g utilisable carbohydrate which is very low. So when I heat a healthy normal diet - I gain. Low carbs and I lost 35lbs of pred-associated weight.
PMRpro is right, losing eyebrows, particularly the outer third, is a sign of hypothyroidism.
Thanks for that sazzyb will have to do a bit more reading up on that .
66Mac
... and hair loss everywhere else in my case but don't want to depress you, lol. Ask for a print out of your blood tests, if he's only done the TSH test it's a waste of time. There's a good support group on here, Thyroid UK.
Hi , just had a look at the thyroid uk site , will have a chat with my doctor next week as I'm quite sure he has only done a TSH test . Don't want to be an internet doctor or anything but a lot of the symptoms that are mentioned on the check list are what I have experienced during the past few years .
Thanks 66Mac
My dermatologist today told me to continue the Rogaine even though she thinks I'm experiencing a telogen effluvium, a temporary hair loss due to some condition, stesss, or medication. I told her I thought it was the Pred on top of my post menopausal (androgenic) hair loss. She order d blood tests to rule out thyroid, another autoimmune disorder, iron deficiency, vitamin D deficiency and who knows what else.
I asked about chia seeds but she had no info on chia and hair regrowth.
She would have recommended revisiting the use of finasteride, aka propecia. It I told her I didn't want to add another Med to my routine.
Hi Hindbags,
The hair loss problem comes up very frequently on this site, and yes maybe the Pred does cause some problem, but I'm convinced the main problem is stress - every time! Along with your illness, whatever that may be, not just PMRir GCA but any illness.
I recounted this story to someone the other day - my hairdresser, whom I've been seeing for best part of 20 years, said to me at my last appointment "your hair is in better condition than it's every been" - and she's right, it is. The last 20 years have been - me still at work for the first six, worrying about hubby and his health for 16 years, my ill-health for 6 years, and Pred for 4&half years.
Now off Pred, GCA gone, although OA rampant, and, unfortunately, no hubby to worry about - my stress levels are minimal - and my hair is good.
No saying it's going to take 20years 😉 but once you begin to feel better and stress reduced it will improve.
P.s. I tried all the usual products early days - no great improvement sorry to say.
I've had greater stress in my life before so I really don't think it's that.
I'm so scared...the chipmunk cheeks and thinning hair ( i will need a wig soon) is what is giving me me the most stress.
Hi Bonnig,
You may correct, but now you have stress AND illness combined, that's a bit of a recipe for disaster!
I know you're stressed about it, we all have been, but, unfortunately that doesn't help.
If you do need a wig - that's not so bad, nowadays they are a lot more 'natural' that they used to be. Talk to your hairdresser and doctor about things, and if necessary ask to be referred to a specialist. If it's really getting to you, then tell the doctor so, don't just let it fester.
This is the follow up from my dermatologist re tghe blood tests she ordered because of the telogen effluvium which she attributes either to the PMR and or to the Pred. I've copied and pasted her summary.
"Your antiSSB,
which is
nonspecific one, used to be +, but now everything is negative probably
related to your being on prednisone
(suppresses the ability to make antibodies).
Your thyroid, iron, vitamin D levels were all normal, so that covers all the common causes of telogen effluvium
that we test for.
Finasteride (aka propecia) helps the hormonal/ androgenetic component, but won't help with the telogen effluvium
unfortunately. The frustrating thing is there isn't much you can do for telogen effluvium other than wait it out so
hopefully the hair loss will stabilize as the PMR gets under control and you taper off prednisone."
What I find most interesting is that testing for autoimmune disease is compromised by the presence of Pred. I know the pred leads to false neg TA artery biopsies. I know that Pred suppresses the immune system. I didn't know that the suppression of antibodies would lead to false neg on tests of autoimmune disorders. Just read elsewhere that it doesn't for everyone.
"We are all different." I believe I've heard that somewhere around here!! LOL
Hair loss… is this normal?
Hair Loss - Feeling Desperate 
Hair loss and Viviscal
Hair loss through predisilone
