Hi everyone...haven't posted in a while. I have GCA since Sept 2014...started at 60mg and now down to 10mg...some issues along the way. Started 15mg at the end of June and had lots of things going on....gallbladder removal, 2 UTI'S, calf pain and hair loss. As I tapper down some side effects go away and I get others. Right now my main issue is my hair. lost so much, it is now very thin. Had to buy a wig and just wish I knew when this will stop. Does anyone have any info on the hair loss and at what mg it will stop falling out? Moon face has gone down some and hoping to be rid of these side effects soon. CRP has been elevated since I was on 15mg...stayed on 15mg for 3 months. With all the inflammations that was going on and no symptoms of the disease my Dr's decided for me to come down 1mg at a time for 3 weeks each. So far so good. Sed Rate has been good.
Any info on the hair problem will be appreciated. I am sick over it...I had nice thick har and right now I don't want to go out without a wig. Nothing like your own hair. Thanks. Bert403
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Hair loss is very often due to illness - and that would fit with your diagnosis last autumn since the falling out often starts 3-6 months later and continues for a while. It could also be the high dose pred - it does happen to some people. The same thing happened to me after being really ill and in hospital for 3 weeks 3 1/2 year ago - but by a year later, a lot of hair fallen out but the new hair was starting to grow again. It was different, my hair had gone dry and frizzy and pretty much stopped growing in length. The new hair was curly again! The curls have almost gone now it is nearly shoulder length but it is pretty much back to normal at last.
Having it cut short often helps it not fall out so much and a good cut hides many sins! But you have a wig - a pest I know but no worries about a bad hair day! And if you ask your hairdresser she'll tell you if the hair is growing back in again.
Thanks..Hoping it will stop falling out...Yes, your right No bad hair day with wig...lol..one good thing out of all this...Thanks for giving me some hope it will grow back...Did it start growing back while on Pred? I don't care what texture it grows back...just give me the thickness I once had. Thx Bert403
I'm still on pred - it was with Medrol I had a lot of problems and I was switched to a form of prednisone. The regrowth was obvious within weeks - so I don't know if it was happening already while on Medrol but it certainly happened while still on steroids - that was 3 years ago and I'm still on 4mg.
Agree hair loss most likely due to illness rather than Pred. Because of late diagnosis
mine was a problem before I started on Pred, thinning and lack of volume. Like you, not normal at all. I had it cut short because I couldn't lift my arms to blow dry it, luckily it's fairly curly so I went au naturelle between hairdresser visits!
About a year ago - 2 years after started Pred - it was back to normal, so I'm having a longer style. Hair only grows less than an inch a month normally, even less in winter I find, so it can be a slow process. Mind, at least in the winter you can wear something on your head and not look out of place - there are loads of hats, scarves etc to chose from. Just find find something that suits you, and wear with confidence! Hopefully by next summer things will be improving. Talk to your hairdresser, she may have ideas to help, after all she's in the business to make you feel better about yourself!
Hi there so I had PMR and was on prednisone for three years I lost quite a bit of hair but unfortunately it did not grow back. However after the three years it did stop falling out. I now have GCA and I'm on 40 mg of prednisone and it has started falling out again. I have several wigs. They are a pain but if this is the worst,which is not, I'll take the it. The sugar and the blood pressure Are more difficult to deal with. The muscle fatigue and fluid are more difficult. The bruising and the ability not to heal are in my opinion more dreadful. I will take the hair loss and if that's it you are lucky. We can't be too vain while we are on this medication It's a killer and savior. I wish you well. I wish all of us well.
Thanks for your reply. I live in Florida so hats and scarves are out of the question..LOL..more like baseball hats and wigs. Did your hair grow back while still on Pred? I'm just hoping it will stop falling out soon. My hairdresser uses Organic dye (color) and Organic Shampoo/Conditioner. I also use the same products. haven't had color since June..was afraid to, but I am going next Tues for roots & a few lowlights...just hoping it doesn't all fall out...have to do something...right now color is awful .Thx
Whether the shampoo and colour calls itself organic or not it is still chemical or it wouldn't do what you want it to. And in fact - I'd dispute whether it CAN be organic - very many substances that are required to make shampoo and colour are totally un-natural so calling them organic is meaningless.
Get your point about headgear, but you could wear sunhat, a la Joan Collins!
Yes I am still on Pred, 3mg at present. I stopped having my hair coloured for a little while, but I've gone back to it over the last year, it's seems to help the condition, mine is naturally curly, well more wavy, and a bit coarse so it never looks smooth and shiny. We all need the help we can get, especially when we don't feel our best. As the advert says, 'you're worth it' so go for it!
Bert, I have naturally fine hair and, like you, got very concerned when it started falling out and almost blocking the plughole in the shower basin. The 'fallout' didn't start whilst on the high 40mg steroid starting dose but as I got lower which at the time I suspected was caused by the higher dose but took a while to actually become apparent. The good news is that it did eventually stop falling out and did almost return to it's previous healthy, if fine, state. I always ensured that I used gentle, organic shampoos/conditioner. I also add a good helping of wheatgerm daily to my diet - it is very rich in folic acid, Vit E and Vit B - all excellent for skin and hair. It's really a powerhouse of important vitamins and nutrients. Perhaps you can look it up - it might just help.
Thanks for your reply..Did your hair stop falling out while still on Pred and at what dosage? I take Biotin and Folic Acid...doesn't seen to help. I will definetely check out the wheatgerm Anything that may help. I also use Organic shampoo/conditioner and hairdresser uses organic color on roots & lowlights...haven't had color since June and going next week. I am worried it will all fall out, but right now my roots & color is awful...I can always throw my wig on...My wig is beautiful..much nicer than my own hair....just hate to have to wear it. Thx
Yes, it did stop falling out whilst still on Pred, I think at around the 10mg dose and just below if my memory serves me right - it's a long time ago now so I'm sorry I can't be more definite. I've never used hair colour (strangely born with natural blonde streaks!) so I don't know whether colouring would be a good idea whilst your hair is falling out. I used to have the occasional light body perm but stopped those during the years I was on steroids. I have two friends who have had very good results with Alpecin caffeine shampoo. Although not on steroids, one had suffered total hair loss due to chemotherapy for breast cancer and the other after the shock of losing her husband. I'm sure your hair will return to normal as you manage to further reduce the steroid dose and as all the hormones affected start returning to normal.
I know everyone is different, but I just started 10mg and thanks for giving me some hope sooner than I expected. I will check out the Alpecin shampoo..every bit of info is a help..I am leary about the hair coloring...I am not getting bleach, just roots & Lowlights (dye)..I have always had highlights, but since on Pred I get Lowlights and use the blond base color as the highlights, but it's so long my hair looks awful...taking a chance..hope I don't regret it. Lucky you to be born with blond streaks...Thanks
Hi I feel like I am not alone. I live in Florida. I started on 15 mgs back in April of 2017 and down to 4 mgs. Yes, I noticed hair fall out as I got lower in dose... It scares me to death. I wash my hair 3 times a week. I agree about getting a good cut but regardless, the hair still comes out. I take Biotin but I doubt it is really doing anything plus all kinds of vitamins. I tried washing my hair with Nioxin. All it did was strip my hair color. I guess I have to be patient.
I, too, have lost a ton of hair. I'm finally seeing bits coming back in at 8.5 to 9 mg. I have left mine a bit longer and try not to wash it daily when possible. I've considered a wig, but haven't taken the step to do so just yet. I haven't had any major illness, so am assuming it is the prednisone. It's a bit frizzy (new hair), but not enough to make much difference. Was just so excited to finally see new hair. Hopefully, yours will begin new growth soon.
Actually you have had a major illness - and are still going through it! Don't underestimate the effect of PMR on your body - it may not be as dramatic as a heart attack or cancer, but it still takes its toll.
I think sometimes we all are prone to think of it as "just" PMR or GCA - please don't! It can have a major impact on life (know that from personal experience) - not necessarily life-threatening, but certainly life-changing. Trouble is, as has been said many times - we don't look ill!
I agree, I have went through hair loss twice, once before I was diagnosed and the other this last spring. PMR is a horrible thing, I have had colon cancer and this is right up their as bad. I was only on 4mg in the spring but still lost the hair, blood work was fine and so was I!! Once your hair stops coming out it takes 3 months for it to start growing again! It takes all your dignity away! Prayers for all of us with PMR, we are all sisters!!
You're so right; I've never felt "really well" since I was diagnosed, so have had and still going through a major illness. Maybe one day we'll all be fortunate to experience remission. Keep praying.
Thanks for giving me hope about new growth...I am on 10mg and maybe I will start to see a change soon. I also try not to wash it often, but I go to the gym and get all sweaty so I have to wear the wig afterwards (which is much nicer than my own hair...I do feel more normal with nice hair, but it's hot in Florida and prefer my own hair. Thx
Forgot to add - don't be too seduced by the advertising blurb on some shampoos - but do go for gentle ones, say baby shampoo, or those that are sulphate free (bit more expensive, but no chemicals). Clean hair is usually a bit bouncier, but you don't usually need to wash it every day, that strips it of its natural oils etc.
The condition of your hair comes from mainly inside,so a good diet, probably what you're eating anyway for PMR, is the key. Take care.
Thanks for your reply...I have GCA not PMR...I do use Organic Shampoo/Conditioner and try to wash it 2x a week...losing too much when I wash it & blow it ore often. Wig is coming in very handy..Thanks you.
I too have lost quite a lot of hair, possibly from the Pred. but more likely I think from the Methotrexate I was on for 6 months. I have been very pleased with the grow back- instead of fine, lank, greasy hair I now have a beautiful wave in it and curls at the end, I don't have to wash it so often and don't have to blow dry it. It looks so much better than it used to, and I tell everyone who comments on it that it is the only good thing to come out of all this!!
My hair fills my brush every time I brush it. Dr says it's the prednisone. I'm down to 9mg from 20 after 9mo. For me the brain fog is awful too. The weight is the worst. Hoping some day this will be GONE!!!
My GCA was treated for 2 years with Pred doses from 60mg down to 10 mg. I lost a lot of hair. Handfulls. But though I've been down in dosage I will probably be on 5 mg. forever since my adrenals are now 'toast.' Never fear! Once around 10mg my hair began growing back!
I have had Type 1 Diabetes for 40+ years, severe R. A. And Parkinson's. Prednisone screws up blood glucoses to an unmanageable degree. I still work and would suggest you count your blessings that hair loss is your major concern.
Sorry to hear about your health issues...I guess your right that my hair loss is really upsetting to me and not any other serious issues. . I wish you good luck.
Thanks for your reply. Sorry about your neck pain returning. The calf pain started at 14mg. Dr gave me ultrasound of arteries & veins. Everything was good. At 13mg it got better and at 12mg it was gone. During all that time my CRP was up to 10.4 then down to 8.0. This time my CRP was 22.6 at the end of 11mg. Don't know what is going on but I feel fine..no symptoms. Hope nothing else is brewing. I never want to go back up...had enough of this drug. AS far as blockages, I go to a cardiologist and every few months he does an ultrasound of my heart. I guess everyone is different...my moon face is so much better..not quite normal yet because I have no wrinkles..lol I hope you get things under control and our hair comes back soon.
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