Hi everyone. I guess the title says it all......I started on 60mg Pred Dec 21 and gradually have reduced to 6mg....so far so good, sort of. 4months ago I started having a weekly Actemra injection. About 8 weeks ago I started to loose my long thick curly hair and now I would estimate that I have lost at least 50-60% of it. On top of everything else it is quite devastating, but what I find more so is my rheumos' remark that she doesn't think being on Pred is the cause. I don't take any other prescription meds, before GCA I was a very healthy fit person.
Does anyone else suffer from hair loss since taking Prednisone? I seem her next week and I would like to have some similar stories to take to her.
Thanks to everyone here, I would not have gotten through the last 7 months without you all. I mean that !!!
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MarksPoint
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I would have a consultation with a proper specialist, a Trichologist. I have experienced hair thinning but nothing as bad as you describe. My daughter got Alopacea a few years back, during a stressful period, but that was bald patches. Good luck, it is devastating but this does not sound typical.
I just Googled 'Actemra hair loss' and got several references to studies suggesting that it happens. I know that hair loss is meant to occur on pred too because that was one of the things that horrified me most about being put on it. My hair is still mostly on my head ... so far ... but I have not been above 15mg. Think about what happened about 12 weeks ago - illnesses, stress, drug dosage? Hair is often meant to fall out about 12 weeks after the trigger event.
It often appears to coincide with the pred - but very often it is due to having had a serious illness and there is a delay before you notice the hair loss. GCA is a serious illness - and it can affect the blood flow to the scalp which doesn't do your hair much good. Pred can also make hair brittle and it breaks off.
Lots of people experience changes in their hair when on pred - curly hair goes straight - but then, mine did with PMR, long before pred. Straight hair becomes curly, frizzy - like mine now, still on pred but hair very thick but frizzy rather than wavy until it is longer and the weight smoothes it out.
And a PS: researchers in Leeds identified Actemra as the cause of hair loss in a patient on it for juvenile RA although the description of the events makes me think it was a mix of things and difficult to identify one factor.
Thanks for your help with this. The only illness or stress I have had in the last 12 months is being diagnosed with GCA, and for the first 4 months taking high dose pred my hair didn't shed it just changed texture - dramatically. I also noticed there was no oil being released from my scalp to lubricate my hair. I had always taken this oiliness for granted and would wash my hair every 3 or 4 days when it got a bit 'greasy' looking. This stopped in those 4 moths too. Then about 3 months ago my hair started to shed....same time as I started Actemra and reducing the Pred from around 50 down to 20mg. Just as an aside I also noticed that on high dose Pred I had no underarm 'body odour' . I had the normal amount of this and would use deodorant every morning.....since being on Pred no need for deodorant ! What a strange and hideous medication this is.
I think that one of the problems with hair loss and skin thinning, is that it does not help your skin and scalp if you wash you hair too often and shower everyday.
Many many moons ago I developed a very bad rash on arms - the GP (who was a lady at that time and quite young) asked how often I showered and washed my hair and what I used.
Then she explained that showering everyday and using soap etc and washing my hair more than twice a week, that I was stripping all the natural oils off my skin and not giving them time to replace.
The rash disappeared within two weeks and I followed with a new routine she told me to try, it worked. My hair is washed with water and I shower twice a week. I have never smelt, well if I have nobody told me and believe me my family would have told me straight away. I also started to use Double Base Gel when another GCA/PMR patient told me it helped and I still use it.
I too have not used deodorant for the 4 years I’ve been on pred. As far as my hair goes, it did shed some and change in texture along with no longer being oily.
I’ve heard that too jiasc that Folic Acid tablets prevents hair shedding. I’ve been taking it for a few months and hair shedding is much less. When diagnosed with PMR 2 years ago exactly, I had a lot of hair loss which was devastating. I think it was a combination of the illness and being on prednisone, Be heartened it does grow back albeit very slowly. Hairdresser recommended Serioxyl shampoo and conditioner by L’Oreal which is also very good for hair shedding. I’ve thrown every shampoo going on my hair and I find this one the best.
I'm not on Actrema, just Pred, and I have actually found that my hair is in better shape now than before. Maybe because I had mild psoriasis on my scalp which has cleared up since the Pred kicked in. Good luck with finding a solution. Hair is a very emotional thing!
Certainly doesn't sound like a coincidence.The loss is very quick as well , alopacea can happen when your body is under a physical or chemical stress not just a mental one.
I'd get to the GP if I were you and get your standard blood tests done. Liver and kidney function , folic acid and ask for a thyroid check and testosterone.
Changes in your liver function , thyroid and vitamin deficiencies can cause rapid hair loss and if it is something to do with your medication or other deficiencies sorting it out sooner , rather than later , may give you more chance of getting your hair back.
My friend's daughter had a drug change with her steroid regime that caused a big swing in her thyroid function and Vitamin B , she lost all of her hair in about 6 weeks. When they rectified it it grew back steadily.
Hello MarksPoint.I was diagnosed with ‘Alopecia Areata’ around two years ago (it is also an autoimmune disease) . A few month later I was diagnosed with PMR. My consultant told me that it is quite common to have more than one autoimmune disease. My hair thinned a lot when I was on around 15-10 mg of Pred. I also have small patches of hair missing. I very much relate to your comment ‘that you found it quite devastating’. I’m lucky as I had a lot of shoulder length wavy hair to begin with but I still found it very distressing. After a few ups and downs I have gradually reduced my dose of Pred to 6mg. It could be my imagination but I feel my hair has become a bit thicker, although due to the alopecia the patches remain. Although views do differ I find that if I wash my hair less frequently than I used to and use a caffeine based shampoo it helps with the body and texture of my hair.
I hope your meeting with your consultant goes well. 😀
I'm also a GCAer who has been on Actemra and prednisone almost three years. Yes, my hair did thin and then about a year ago it got all curly, curly and coarse. Now it has settled into a thinner head of hair, but enough, wavy..much softer. So hold on, replacements are surely on the way.💕
My hair stopped growing until I was down to about 5 mg from 75 mg. I lost hair in a circle but not on top. Most has come back but the band around my head is not so thick. t the same time I grew red gold sideburns to go with my fattened face. They were 3 inches long and I have grey hair! At their worst the hair was halfway across my cheeks. I suffered badly from lots of pred side effects. Almost back to normal now.
I have always had very thick hair, but after a year on Pred i could see it was getting thinner! My hairdresser also noticed the difference , my brush had loads of hair in it . I am now down to 7.5 of pred after a large dose and for a while now its getting thicker. it amazes me how the Drs etc never put things down to medication, when clearly its a very common problem ! Good luck, im sure it will grow back slowly . Best wishes Viv🌷
I suffered hair loss too on prednisolone at the higher doses. The remedy for for me was a daily folic acid tablet which helped enormously. It’s not a quick fix,takes about six months to get back to normal hair but it worked for me. I still take it to this day even though I am on a lower dose of seven mg now. The other benefit is stronger finger nails and they grow faster. Hope this helps.
I started to lose my hair when I was on a high dose of pred and was given methotrexate. It completely freaked me out. They stopped the methotrexate and a year later I was put on Actemra. No problem with the hair now.
Whoever gave you that methotextrate should have know that you are nearly always issued with Folic Aced at the same time unless it is contraindicated with other meds you might be taking. . I think this was because Metho was one of the first cancer drugs.
I am one of the 'odd ones' GCA 5 years and no hair loss. The best bit was my moon face I lost my chicken neck but the moonface went away quicky. My nails were stronger than they ever had been but back to normal when off pred
I have been losing hair for the last few years. It stopped falling out when I went on 40mg pred, but this might be coincidence as PMRPro says there is a delay of a few months between cause and effect. Now it has started falling out again but I'm down to 9mg. So I'm not sure pred is the cause. I'm not on actemra. I think I'll try folic acid.
My hair thinned following 60mg -40mg pred. Now on 4 mg and my hair fell out dramatically a few months ago. about 60-70% has gone. I think it stopped recently. I just ignore it - other than cleaning the floors - and wear long bright scarves turban style.
Yes, I experienced hair loss when I was on a high dose of Pred. This definitely happened before I started on Actemra so I link it to either the Pred or the disease itself. As PMRpro says, GCA affects the blood flow to the scalp. My hair became thin, especially on top, and very dry and frizzy. Conditioners didn't seem to make any difference. Gradually, as I reduced the Pred and the Actemra kicked in and helped reduce the influence of the GCA my hair grew back. It took about a year before it regained its normal, healthy condition. My hairdresser said there was evidence of some regrowth even at it's worst, so there was hope. He suggested I use a shampoo by Maria Nila called Head and Hair Heal which he reckoned helps even people on cancer treatments which cause hair loss. It's expensive, and it may have helped me, or perhaps the hair regrowth would have progressed anyway.I do sympathise with what you're going through, it's devastating and knocks your self confidence.
Hi, I know how you feel. I lost 50% of my hair while on pred. Alandrolic Acid is also a culprit It’s written in the side affects of both meds. I went to a Trichologist for help. Thankfully it’s coming back. I’m sure yours will too. Good luck .
My son, when small, lost half his hair suddenly, I think after an infection. We went to see a dermatologist who specialised in hair problems. He was given Z span zinc tablets, minoxidil ( Regain over the counter but his prescription was stronger ) and a topical steroid. His hair came back 3 months later, brown instead of blonde and curly rather than straight ! It might be useful to ask if it’s ok to take eg zinc and folic acid with your steroids and in what quantities . Zinc in large quantities can give you a touch of morning sickness and maybe ask for a second referral to a specialist dermatologist. I always remember being rather reassured by the sight of this particular consultant as although middle aged he had very thick locks ! Good luck.
Same as everyone - on 15 plus levels of pred, particularly when I went up for a flare, noticed hair loss. Not drastic but because mine is very fine anyway, my partner started to say he could see my scalp. (After 30 plus years he doesn't notice much!) However, it has started to grow back and feels much thicker now. (I am on 7mg). Also my hair was extremely greasy but silky when washed. Now it is dry and a bit frizzy. I take biotin. Don't know if it helps. Good to hear from others that it will get back to normal eventually. Hope yours is sorted soon MP.
I started taking biotin as soon as I started on prednisolone. I have always had fine hair so was worried about hair loss even at a lowish dose of 7.5mg. It took about 6 months but my hair has thickened up and my hairdresser says she can she areas of new growth.
On of our fellow suffers in Florida commented to me she list all her hair. She has made an upside to it by buying wigs and says getting made up in the morning is easier. It's devastating we get it but know it's happened to others.
I have not written on this site for a long time as I recovered from GCA (which I had for four years) is now hopefully a thing of the past. When I read your post I really felt for you. I also had hair loss while I was on Prednisone. I started on 60 mg and after four months I began to lose my hair. This was very upsetting to me and I felt that my dermatologist was very unsympathetic and really had no advice to give me. I read that stress and Prednisone can result in hair loss. Fortunately this did not last the whole time I was on Prednisone. Take heart, your hair will grow back. I also gained weight and had a bad taste in my mouth all the time. I lost weight as soon as I finished taking Prednisone.
Thanks so much Stella it makes a world of difference hearing from people who have gone through the same horrible illness...and survived. I hope with all my heart that you continue to be well and GCA free. Xxx
I have been on prednisone for 9 months. For the last 4 months my rheumatologist has been weaning me down from 40mgs. Everything has been okay during the weaning process until about a month ago when my hair suddenly started to fall out. I am finding little piles of it on the floors, carpet, bathtub and a lot more of it in my brush. I am concerned obviously because I am down to 2.5 mgs now. In my case it must be a cumulative effect of taking prednisone over time that is doing it.
Yes, I have. It's very noticeable and it drives me crazy I thought this was a common side effect. I think if you Google hair loss and Prednisone you'll get confirmation to show your doctor.
Hi, MarksPoint. I have posted to this site regarding hair loss in the recent past. First of all, under FAQ's there is a whole "Hair" section. May answer some questions. My experience with hair loss is many fold. The first time, we went on a cruise and halfway thru the cruise I contracted some kind of virus. About 3 months later my hair started coming out. I got just to the point of buying a wig, and then it finally stopped falling out. And it all grew back in. In March of 2020, right after the US shut down for Covid, I suspected I was having a very mild case. Never was positive. But 3 months later, my hair started coming out again. Was sent to my dermatologist. She kind of brushed it off. (Her hair was thinner than mine, so I guess she didn't see what I was worrying about.) Anyway, it continued to come out, and it was worse than the first time. So I went to a different dermatologist, who did a biopsy. It came back as alopecia areata (pattern baldness). I was NOT a happy camper!! But guess what. It has now come back - curlier, frizzier, and dryer. But at least it's there! Three weeks ago, I had Covid for sure. Tested positive. I'm figuring I'm going to be going through this all over again in about 3 months! (What can I say?) I would suggest you start taking Vit B6, keratin, and collagen, and also folic acid. Massage your scalp, and don't wash your hair in very hot water, because (according to my hairdresser) that loosens the follicles and you'll drop more hair. Also, stress can cause you to lose your hair, and I've read that prednisone can cause it as well. So,with all you're going thru, I guess your hair has a right to fall out. Just give it some time and see what happens. Stay positive. Have a plan. If it doesn't come back, the wigs available today are wonderful. Good luck!
Thanks for your wonderful insight into all this. I feel for you and all the problems you have gone through. If one good thing has come out of having GCA it is that I now have a much greater sense of empathy ...a huge sense in fact and feel so personally connected to others going through such horrible health conditions. Thanks again. X
I have GCA and started on 60mg of prednisolone, about 6 months in I noticed my hair falling out at an alarming rate. Since I have very long hair it was so noticeable, hair everywhere, on car seats, furniture etc. To be perhaps reassuring to you, the heavy loss stopped after about 4 months, I never had any bald patches just thinner hair. My hair has never been the same since i.e., thinner, frizzy it is still long and I have it cut regularly and only wash it once a week. I think having an autoimmune disease alters a lot of things about us and taking prednisolone doesn't help. Try not to be too worried, I know I was, but things resolved themselves.
Thankyou for your comforting words, they mean so much. Yesterday I had it cut short for the first time in my 70 years of life........feeling very strange but am learning to outsmart this diabolical disease, at least in a small way. Xxx
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