Hair loss through predisilone

[Carolred]

I have had GCA sine last July finally managed to get from 40mg to 10 seem stuck. But I have noticed my hair getting thinner, luckily I have a good head of hair. My problem it doesn't seem to say that this is a side affect can anyone verify this. I have dry eyes and some fatigue which I expected but not to lose my hair.

[PMRpro Ambassador]

One form of steroid made my hair frizzy and like a haystack but neither prednisolone nor prednisone have.

However, it is very common for hair loss to accompany serious illness of all sorts and GCA is serious. It tends to become more obvious a few months AFTER you were ill - I had an interesting few months nearly 5 years ago and my hair was an absolute mess a few months later. But since then it has grown back out and was totally back to normal before I had a flare this time last year. That resulted in a return of curls as I had to go back to 15mg of pred but they are calming down again.

To get from 40mg to 10mg in such a short time is really good so I wouldn't worry that you have got stuck for the moment. 10mg does seem to pose a sticking place for a lot of people so you are not alone. I suspect it may be the point where some people start to experience the adrenal function beginning to return while others don't meet it until a bit lower.

[Carolred in reply to PMRpro]

Thanks for that, I hadn't noticed it before but find hair on my clothes now. I just think what side affect will come next. I haven't felt so good the last couple of weeks so maybe that's why the doc won't reduce from 10mg I can only hope bloods are better on tues.

[Hidden in reply to Carolred]

Sometimes we just have to hang in there! Shampoo more gently, pat it dry rather than rub & use low temperatures on your hairdryer to style it.

Hope you feel better soon 💐

[DorsetLady PMRGCAuk volunteer]

Hi,

It can be, more more likely the fact you have been/are ill.

If you look at arvine's post of 2 days ago, titled 'hair thinning on prednisone' hopefully you'll get some reassurance and info.

[Hidden]

Hi Carolred

I had issues with thinning hair at the front, when l first noticed it l was devastated & blamed the Methotrexate I'd recently been started on to aid the reduction of high dose Prednisolone but my Consultant thought it was the steroids!

I used Swell Shampoo, Conditioner & Serum; l checked with the Medics/Pharmacist & started Perfectil Vitamin Tablets for Hair & after about 3months or so I could feel little tufts regrowing. My GP offered me 'Regain' but l had high BP again thanks to the Prednisolone so l declined that offer.

But as PMRpro says being unwell affects your hair & nails.

It will regrow & if you have a good head of hair other people really won't notice.

Best Wishes

Mrs N

[PMRpro Ambassador in reply to Hidden]

And some of us get WONDERFUL nails due to pred! I was by no means the only one

[Hidden in reply to PMRpro]

Well you know my name 🤗

Mrs Nails 💅🏼

[PMRpro Ambassador in reply to Hidden]

I suppose I should have said relatively - mine were never good enough for a moniker but even now, at a lower dose of pred, they are better than for years

[Hidden in reply to Hidden]

My hair started thinning bad after using methotrexate. At 16mgs prednisone now. After methotrexate my hair grew back thicker n curly . It was not the only bad side effect for me....

[Hidden in reply to Hidden]

Hi Lin

I remember reading your post about Methotrexate & the awful side effects you suffered, l'm doing OK on it & if it helps get the Prednisolone down I'll be very pleased!

Have you moved into your new apartment yet? How's the weather in California? 🌞

Best Wishes

Mrs N 🌺

[Hidden in reply to Hidden]

New apartment 18th I can hardly wait.. I am so glad u don't have any issues with methotrexate. I share mine so others will know... Lucky for some..

Been packing slowly n am worried about the stairs but my son n grandson can take over I am so used to doing it all myself

[Hidden in reply to Hidden]

Yes Lin you will have to Supervise & let the guys take the strain.

It's like when 'I do the Garden' sitting in a deck chair, pointing out what needs doing! 🌺

Works for Me! 🌸

Take it easy

Mrs N x

[allykat]

Hi Carolred

I started on 50 mg prenisolone in April 2015 and didn't notice hair thinning until November 2015. By that time I was down to 8 mg. My hair really started thinning and every time I washed it there was a lot in the drain catcher. I flared in February 2016 and was back up to 15 mg. By that time however my hair finally started growing back in. I started with a good head of hair so no one likely noticed but me. It still comes out but not so badly. The only downside of the regrowth is that it is in very poor condition. It has a real kink to it and the texture is like a pot scrubber. I just keep getting it cut short until the prednisolone gets out of my body for good. Am down to 2 mg so hopefully it won't be too long.

A first I thought the hair loss might be because of alendronic acid which I have taken throughout. However, a very good friend of mine who is a GP says it is more likely the effect of the steroids and will have taken several months before it started having an impact.

Hope this helps.

Cheers

K

[Carolred in reply to allykat]

Thanks that makes sense as I never noticed it at first as I have a good head of hair. It was only when I noticed it on my clothes that it clicked my hair was getting thinner. Hopefully it will slow down as I reduce steroids I have doc this week and would like to go down to 9mg if bloods allow.

[nuigini]

Like you Carolred, I've experienced a fair amount of thinning hair. Thank goodness I had plenty to start with!! I think most of it occurred at the higher dose levels of prednisone and has slowed or stopped now that I'm on 11 mg. I started at 40 mg almost 3 years ago and am now at 11 mg with a couple of flares in between.

[tgca]

About this time last year (15 mgs roughly) my hair came put in chunks... poor girl who cut my hair nearly had hysterics and so did I but mysteriously, as I reduced the meds slightly, the hair remained and new stuff started to grow. Now my barnet is a total mess of greyish wire wool so am waiting for the new to grow to match the old in length... don't give up hope!!

[Seabyrd]

I had heavy hair loss with Pred and MTX... my rheumy put me on Folic Acid and Biotin and after a few weeks it stopped falling out... I know that did the trick for me. I still take them both daily...I had to stop the MTX after a few weeks as it made me sick and then I started Orencia Infusions which seem to be helping with the inflammation. I am currently down to 6mg pred. I have PMR/GCA & RA.

[Carolred in reply to Seabyrd]

Thanks I think I might give Folic acid a try it seems to be slowing down now but that's maybe that I've just started noticing the loss.

[Hidden in reply to Seabyrd]

Hi Seabyrd

That's very interesting about the Biotin, I'm already on Folic Acid with my Methotrexate. However, I've had Chemo for Breast Cancer while having PMR & although my hair is now growing again its only very thin & only about a third has regrown so I'm still sporting my wig 💁🏻 which fortunately l love but if the Biotin could help I'd be more than pleased. I think the Pred & MXT are slowing the regrowth down. I'll check it out & ring my Rheumatologist & see what she thinks.

Thanks 💐

Mrs Nails 💅🏼

PS Did you take your Biotin everyday or only the six days you took Folic Acid i.e. Non MXT Days?

[Seabyrd in reply to Hidden]

Hi there... I took the Folic Acid everyday and also the Biotin...Biotin comes is different strengths.... I take 5000 mcg capsule once a day.... it made a huge difference... Hope it helps you too.

[Hidden in reply to Seabyrd]

Thanks Seabyrd 💁🏻Fingers Crossed x

[nancyannehanson]

My hair was breaking off and thinning. I finally just went to get a buzz cut I am reducing my prednisone however their are spots onyou head with no hair.

[kulina]

Yes, it is a side effect that will go away once you reduce the Pred even more. Since it's not coming out in clumps no even notices but of course I do. Meanwhile, my hairdresser suggested I wash my hair only twice a week and be very gentle with it.

[christine2715]

I too have really thin hair now. A friend gave me a silk pillowcase her hairdresser recommended which cuts friction when sleeping which I think helps a bit and feels nice anyway.

[Hidden in reply to christine2715]

And, it's better for your skin too!

[mega]

Have just caught your comment on hair loss. I have been on Pred for nearly 6 years now and am horrified at the quantity I've shed and fed-up with it clinging to clothes bedding etc.

What is really, really annoying though is the increase in 'peach bloom' on my face and neck. I'll have to stat shaving soon!

[Hidden in reply to mega]

mega

Hi, my face was covered in peach bloom, nice term, so l took my epilator to it, painful 😖 only a bit at a time & once l'd removed it, it really didn't get the peachiness again. I didn't want to shave it as I knew it'd become stubbly.

I have my eyebrows threaded now & she always checks my face for any strange growth!

I lost all my hair due to Chemo so was beautifully hair free on my face but wasn't so keen on the eyelash/eyebrow loss!

Best Wishes

Mrs N 🌺

[PMRpro Ambassador in reply to mega]

Like MrsN I have an epilator - and it did a sterling job on my black beard due to Medrol. Haven't had any trouble with any other form of corticosteroid!

My daughter now gets hers sorted at the same time she get hers brows done.

[Hidden]

Hidden

Hi Lou

11mg was always my sticking point, l forget now how many times I tried to get from 11mg to 10mg. Have you tried the Dead Slow Taper?

Also try going from 11mg to 10.5mg first, it's a bit fiddly & it means cutting tablets but it may just help you break through that barrier!

You can buy a pill cutter in the Chemist & just divide a one mg tablet. I'm on 6.5mg & I cut 5mg in half (as I find it easier) & make up total with 1mgs

My Consultant recommended for me that once I got to 10mg to decease by 0.5mg so it's not unusual.

Best Wishes

Angela 🌺

[Hidden]

Hi Lou

I'm on oral Methotrexate, I was put on it when l was at 18mg & having issues reducing, l had to come off it for Surgery but requested to go back on it about 5months ago as my PMR was raising its head again after being fairly controlled for a while.

I was very anxious about taking it at first & l did get some nausea on the day l took it, so l tried to avoid the smells of cooking & ate a lighter more bland meal, which mainly consisted of chicken. I was given an anti emetic but within a month l was OK & had no issues this time around.

I believe the injection does not cause nausea as it bypasses the stomach, so you should be OK

Let me know how to get on.

Best Wishes

Angela 🌺

[Hidden]

Good Luck with the training 🍀

Are you on Folic Acid on none MXT days?

I take my MXT after my lunch & avoid food smells the rest of that day but have had anti emetics to help if required.

Take Care 🌺

[Hidden]

Anti Sickness tablet, taken for Nausea x

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk...

and the link for a very successful reduction plan.

You can help with the weight problem by cutting carbohydrate food including fruit drastically. I lost 36lbs - and almost immediately from midriff and face. Others have done too.

[piglette]

Hi Louise, why a target of 7.5mg? It seems a bit arbitrary! Surely your target is the lowest dose that suppresses the inflammation and you feel comfortable, that could currently be lower or higher than 7.5mg. Good luck with the reduction.

[mega]

Thanks PMRpro and apologies for being a bit late with them.

I've never tried an epilator but am now growing hairs on my legs which I swear are an inch long which could be a good sign I suppose so might use one in that area. My facial growth seems to have diminished a bit so I'll wait and see what happens there. I'm nearly 78 and on my own, so am beginning to wonder why I bother anyway!

Am on 5mgs of Pred and can't seem to get any lower. I feel 'reasonable' (which is great) some days and still damned horrible other days. Diagnosed with GCA 6.25 years ago.