I posted awhile ago about my hair loss. Two months ago I saw a dermatologist and then another dermatologist specializing in hair loss who both said it was because of the prednisone and recommended rogaine to stop the hair falling out until I was down farther on the pred and my body was well enough to take over.
I just reduced to 15 mg. , from originally on 40 last January.
So it’s been two months and I’ve been afraid to start the Rogaine, I have a long history of being afraid of meds and scared of doctors, suspicious of their advice. Never been sick before the PMR/GCA journey. Some of you may remember my getting fired by my first rheumy last spring because I didn’t reduce according to his orders. It’s been a struggle to take meds.
I haven’t been able to resolve this conflict about using the Rogaine, meanwhile everyday I have less hair. I don’t want to end up bald!
One thing I’ve learned from this forum is that everyone is different, but I would like to hear about your experiences. If you experienced hair loss, at what dose did it stop falling out and begin to grow back? Did you have to be entirely off the pred for your hair to recover?
I’m so depressed about this.
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Mstiles
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Yes, unfortunately I am now this last couple of months starting to lose my hair, which started along with itching!...I have always had thick hair, but other people are now seeing how thin it is getting.....😕
I can only only presume it is pre d or PMR....but down to 9 mg after 7 years why now?
I'm not sure how much more my hair will go, but I have a sister-in-law and doctor that both wear wonderful wigs.(you wouldn't know) so if I have to I will, because I tell myself if it was because of cancer I would.
Wish I had some answers for you....but you are not alone....good luck...
Thanks, yes it is hard to tell what is going on with the amount of time it takes for the hair cycle plus all the other variables. Thanks for sharing your experience, good luck going forward.
Hi, I though my thinning hair was Pred. But I stopped taking Alendronic Acid three months ago, my pred is down to 5mg. and I decided I wanted a rest from the Alendronic Acid (havn't told my doctor yet) because I worry about my teeth. But my hair has come back thick and shiny and the pain in my hands has gone.
It's difficult to be precise Mstiles but I think that my new hair growth started when I got to around 10mgs. Of course it grew a bit fuzzy and still is. It doesn't look quite so fuzzy now that it's growing. I'm hoping that it will grow properly one day. The top of my head looks OK but it's the horrible wispy bits further down that I hate.
I did have a chat with a good hairdresser and she told me that not a lot can be done. She said to use mild shampoos and limit the hair drying with a hair dryer, I never use one anyway.
I have two wigs but not had the courage to wear them but I will now that the weather is getting cooler, it was far too hot in the Summer.
I know how miserable it is, I was devastated, same as you.
It just makes all the other stuff you have to cope with so much harder. I hate to go out of the house anymore. I will have to get it cut shorter I guess. It is curly so that helps hide it some. I’m hoping to be st 10mg by sometime in December so maybe things will get better.
Thanks for understanding primaries. If we were guys we could just shave it all off.
My hair was ok until about 5 months after diagnosis with GCA and was about 18mg from 60mg. It started to fall out in clumps over a week, then stopped about 2 weeks later. It grew back nicely. Then about 5m after that at about 10mg it started again but with a slower but steady loss which has gone on over the summer and is only just now deciding to stop. I’ve look like a mad scientist most of the time. Interestingly all my reductions over this time had caused scalp tenderness which is what I got before the first shedding. As Primarose said, it is the new growth that isn’t full length that looks tatty. I’m not at wig stage as I still have too much, though I do have one from the first loss. It’s a pain I agree, but I don’t like the idea of medication for it so am just looking in the mirror and sighing.
Hi there, I got a hair piece which was a perfect match with my own hair and I was absolutely thrilled when I had it put on, I'm still practising but I find it so comfortable and I wear it most of the time, I forget it's on, and no one has noticed as its in the same style I used to have, but my own hair is getting a bit better but I also look like Doc out of back to the future! When I get up in the morning! I'm tapering down I'm on 6mg feel much better coming down of the predisinone which I was put on 40mg but I admit my vanity took hold and my hair made me so depressed that I paid out a lot for the hair piece, but so happy now!
Hi there, it's a partial piece which worked out brilliantly for me if I need a full wig I would definitely get from the same place called Amy's wigs in Richmond Surrey you do not know you are wearing one and no one else does unless I tell them and they have all been totally shocked as it looks just like my own hair used to be, if you can ? I would highly recommend it! I feel so much more confident and happy now when I go out, good luck I hope if you decide that it works out as good for you as it has for me.
I got the scalp tenderness too before shedding. I remember someone posting on here that said they got shedding before a flare started up. Our poor heads!
I’m really in a quandary about using the Rogaine, i guess like everything else it varies from person to person.
Yeah, the mad scientist look, like the scientist in “Back to the Future”, I’m getting there with the scraggly bits. I guess I’ll have to get it cut shorter. From last January when I was diagnosed and put on pred to now It’s been a sad progression.
Illness, of any kind, can make hair thinner and in very poor condition, and from the beginning of an illness it can take about 6 months for the effects to get through to your hair, so that’s sometimes why Pred gets the blame. Stress can also be a factor. I would not say Pred is completely blameless, but it’s not totally the culprit.
Mine was very thin and lifeless before I even started Pred, but then my GCA did take 18 months to diagnose and my husband had been ill for a long time so stressed; once I started Pred at v.high doses it didn’t get any worse!
Now I’m off Pred Its in better condition than it’s been for years (according to my hairdresser).
It will return, but in the meantime try gentle shampoos with thickening agents, and become best friends with your hairdresser!
That's brilliant I hope my own hair becomes thicker and healthier but my hair piece I admit has made massive improvement on my well being so until my own hair has grown back, I looked quite bald as well! I'm in a much better place, coming down of predisinone for me has been relatively good a few days are bad but I'm carrying on as my doctor (dr.rodhughes) wants be to get completely off steriods, hope alls well with you best regards.
Hi, hair loss has come up before here. I was very upset about my hair loss and was told (a year after being diagnosed with GCA) that it can be due to the “shock” of the illness, also that prednisone can be a culprit....mine started coming out a lot...it now seems to have slowed down. I was interested to see that you are now off Prednisone for GCA. How long did you have GCA? I am amazed that you were not diagnosed for 18 months! That must have been terrible for you. I initially started out with 60mg Prednisone....and gradually have tapered down to 5mg. This is after 18 months. However when I tried to go down to 4mg, my blood tests came back elevated (CRP and ESR), so now I am back up to 5mg. How did the tapering go for you?
From 1st pains to last dose of Pred was 6 years almost to the date, but I always maintain the GCA had gone into remission 6 months previously. However I wasn’t going to risk it, so I continued my reduction to zero.
My tapering wasn’t too bad- started at 80mg, then dropped to 60mg after 2 weeks once Ophthalmologist happy my “good” remained as such. Stayed on 60mg for 8 weeks then reduced roughly on a monthly basis.
Nobody rushed me because of my previous sight loss. I never had a flare, but I did increase dose due to high inflammation readings, which in hindsight was caused by stress due to late hubby’s illness - but as GP had misdiagnosed me she wasn’t going to make any more mistakes so always erred on the side of caution.
The time undiagnosed was a very bad time, wouldn’t want anyone to go through that. But I’m still here - relatively unscathed!
Dear Dorset Lady, thanks so much for responding to my message. When you mentioned your eyesight, did it change? That is why I was so amazed when you said you were not diagnosed for 18months...as I was already having double vision after six weeks....it was horrible, but yours sounded worse. Six years is a long time....andI am so sorry about your husband. How awful for you. How are you feeling nowadays?
Thank you again and I really appreciate your wisdom.
I didn’t have have sight issues until 4 days before diagnosis - only the shoulder pains and fatigue building up - head and jaw pains for about the last six weeks (no enlarged nor painful temporal artery).
Eye - right only - started with blurriness at bottom of eye gradually moving up until whole eye affected. Did see GP on second day - told no connection to other symptoms- on 4th day after speaking to optometrist was advised to attend local A&E Dept. Diagnosed within the hour!
Ok GCA wise now, but suffering with osteoarthritis- like many others!
Sorry to hear about your hair & your issues with Meds, realistically do you think you could overcome your issues with Meds or just allow your hair to get thinner?
My hair became very thin on top while l was on high doses of Pred & Methotrexate. However, l sadly did lose all my hair following Chemo for Breast Cancer & three years later my hair is struggling to grow back fully on top so l still wear a wig.
I’ve taken Biotin (Vitamin B7) tried potions & lotions with some success but l think the Pred & Methotrexate are still interfering with any real progress but as the hair on my legs remains very sparse l’m not convinced it’ll improve at all while l’m still on Pred.
It is depressing but for me it was a small price to pay for the treatment for my cancer.
Interesting to read about the hair on your le8gs. I had chemo when I was 40, also for breast cancer, and although the hair on my head did get thin it didn't all fall out. I did lose the hair on my legs and arms though so I haven't had to shave my legs for decades! 😊 Counting blessings
I have lost the hair on my legs and under my arms, it is great when I go swimming in that I do not have to remember to shave! There is always a silver lining.
I'm sorry to hear about your hair, Mstiles! I am fortunate to have very thick hair, which at this point hasn't fallen out in large amounts. When I took prednisone several years ago to combat Lupus symptoms, I lost about 1/2 my hair. Once I was off prednisone, it all grew back - curly! It took about 4 months, a new hairstyle, and patience before I looked "normal" again. Now that I'm back on it for PMR-GCA, I'm trying to keep my dosage low enough to avoid the misery of excessive hair loss. My best to you as you manage this challenging time.
I had breakages at about 7 mg. at 6 mg it started to get better but I had to Ho up to 7mg again. I went to the hairdressers today and she asked me if I had changed my Meds as it had got worse again. Back to 6.5 today and hopefully 6mg soon so fingers crossed it will improve again by 6 weeks time when I go back to her.
I didn't have as high a dose of Pred as you - but when I started at 20 mg TONS of my hair fell out - I don't know how I had a hair on my head. It also went quite mad - well I always had hair with a mind of its own - but it took on a whole new madness!! The fallout did certainly stop when I reduced the pred - but its still mad!! If its the pred - definitely it will stop as you lower your dose. But I do sympathise - its the extra things like that we don't need. I know maybe some people wouldn't be bothered but I was - its not nice to see your hair coming out in very large handfuls. Mine is also much dryer too. Try to keep the condition going if you can - hair masks etc., - it will pay off in the end. Hope it settles down for you - best wishes.
Hi Mstiles Started 20 mg Pred in Feb 18 for PMR and after about a month hair started to fall out blocking the shower drain. I am now down to 11 mg and hair loss has slowed somewhat but is still shedding. I had very thick hair but it has certainly thinned out, but, I am not longer taking Alendronic Acid or Lansoprozole and am hoping it will improve matters. Also looked up on Mr Google that taking one tablet of Folic Acid is helpful for hair loss which I have been taking for about 4 months so I am keeping my fingers crossed that might help. Also do not wash hair as much usually only once a week and am very gentle when drying it with towel and leave to dry naturally. Hope this helps good luck. Take care Angie
I had glorious thick hair prior to starting Pred two years ago. It's still in very beautiful condition because I don't use any products on it at all and I hardly ever wash it, I just use a pure bristle brush to clean it and I wash the brush. I've done this for many years.
It started falling out about a year ago, when I was on 12 mg Pred and it's still falling out.
I've used Rogaine for many years with good results...so far no hair loss on prednisone. The generic is quite reasonable. I saw results in about six weeks though it sometimes takes longer.
It's really not a big deal. I buy it online and use it once or twice a day.
I had a hair loss period during my PMR/GCA progress through drugs. It was very upsetting. Firstly my hair just didn't grow, it was like it was freeze dried! Eventually it started falling out. The hair loss episode took about 6 months. Now, a year after the first fallout my hair is growing well and my hairdresser says it is excellent condition. There are many good sites which explain hair growth cycles which are useful in understanding what is going on. In the meantime I wore clothes the colour of my hair so that fallen hairs weren't so noticeable; used a good quality 'gel' to kind of keep my hair in place and in style on my head.
I was on 12.5 prednisone daily and 15 methotrexate weekly last December when I noticed the hair loss. Around April of this year I was on 5 prednisone daily and 15 methotrexate weekly when I noticed the hair shedding was lessening. Early May I went to the hairdresser to get things sorted out - I hadn't been to the hairdresser for over a year previously because my hair wasn't growing. It seems like a long time when the hair loss is happening but it will recover. One thing I did was to use a non foaming shampoo and rinse (Deva No-Poo) and this seemed less aggravating or aggressive. Knowing the hairs various growing cycles helps and although this is from a heart health site the basic information about hair growth might be of interest to you myheartsisters.org/2018/01/...
Knowing more about the process of hair growth certainly helped settle me down.
I had hair loss on pred l luckily l only had to take it for a short time. I have used the shampoo Alpecin which encourages hair growth by stimulation and thickens at the same time. Hope this helps. Good luck
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