UPDATE I was tested for vitamin and mineral deficiencies. I was low in vitamin D. The hair stopped falling a couple of days after I started taking vitamin D. Hardly anything falls out now, and I have lots of new growth.
I'm on Leflumonide and Prednisone. The photo is of how much comes out each time I wash my hair. My rheumatologist and doctor aren't listening to me about this problem. I can't stop the 5mg prednisone because my adrenals aren't working. I am thinking about stopping the Leflumonide as the bloods haven't improved. I am also desparate enough to taper the prednisone against doctor's orders, but only have 2.5mg doses. My hair loss has been happening for nine months. Anyone else had the same problem?
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Peep44
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Ooooooo Peep44, I am so very sorry this is happening to you! I had alopecia when I was about 30 and it was devastating! I don't "know" how you feel, but I can imagine. Can the doctors say definitively if it's the Pred or the Leflumonide? If your adrenals aren't working... you can't stop the Pred, right? Can you maybe deal with it for a few more months?
I don't know which drug is causing it. The Rheumatologist says the Prednisone. The loss started on Methotrexate and has continued on Leflumonide. The prednisone started a month before the Methotrexate.
How long have you been on leflunomide? I tried methotrexate recently - I took it for a month and my hair came out far more than usual though not as bad as that. Together with the other side effects I decided no way Jose! There is no guarantee it will work to reduce pred anyway.
Are your adrenal really "not working" or not working YET? There is a big difference.
I'd tell the doctor you are really unhappy about the side effects. Though it is difficult to tell how much effect they are having on the pred dose - a friend was on methotrexate and stopped to switch to leflunomide and the PMR pain was much worse without the mtx. With the lefl she did get off pred - but developed neuropathy from the lefl so has had to stop and she is back to the start again. Personally I feel a couple of mg extra pred is far preferable to slightly less on mtx or lefl.
This upsetting problem has been discussed a lot if you do a search you might get some good posts. Discuss the Leflumonide with your doctor. If it’s not adding value then I would want to come off it. It is supposed to be a steroid sparer but as you can’t yet come off Pred. What is it doing for you, apart from making your hair fall out? I actually doubt that 5 mgs of pred would have any side effects. I bet Lfd is the lone culprit. In the meantime, get a good haircut and try these special shampoos, minimise messing about with it, but by all means use some thickening mousse. Don’t despair, it will grow back. I’ve got new curls after having a straight bob for years.(6 mgs).
OMG that photo could have been taken by me! There's hair on the pillow every morning, it blocks the drain in the shower, and if I put conditioner on then I have more handfuls of hair to deal with. Been like this intermittently since starting Pred in decemner 2016. Some weeks worse than others, sometimes stops for a while and I think its stopped, then suddenly it starts again. Still happening at 3.5mg pred. Stopped colouring my hair for 1 year to see if that helped, but it made no difference. I don't take any other meds, just Adcal and HRT.
Yes. I have the same thing happening to me. I am only on Prednisone. I'm at 5 now and had hoped it would have stopped by now, but it hasn't yet. I hate the way it looks. I hate the way it feels. I guess I'm lucky because I started with thick hair 😒
It takes a while for hair to show its changes. There was a time when I got to a low dose I seemed to be losing hair in enormous quantities, but nevertheless it was simultaneously thickening up and becoming more its old unruly mop of "determined Celtic hair". Eventually it occurred to me I was losing poor quality, thin, limp pred hair at the same time as healthy hair became long enough to be evident.
I’m so sorry Peep! It’s horribly depressing! I just posted yesterday about the very same thing, I was wondering if I should use Rogaine as my dermatologist recommended.
I’ve read posts on here about Methotrexate causing hair loss in others.
I hope you find answers and it stops soon! It’s certainly affects one’s confidence. Hugs to you. ❤️💕
That's a worrying amount of hair. I lose a brush full of hair every day but never that much. I think Heron it is probably fight it is falling out to be replaced by new. There is always more there to fall out the next day.
Just heard from the Dr. I have a Vitamin D deficiency and Zinc deficiency. Been prescribed both. Hoping this will help. I am going to stop Leflunomnide and buy some special shampoo. It feels good to have a plan!
Oh wow - I have the exact same! Have been on Leflunomide for around four months now and every time I brush my hair lots comes out - we find it everywhere -the floor, the dinner table the couch etc!! I am VERY fortunte as have extremely thick hair - naturally curly (originally), so I still have some left. If it had been thinner I think I would definitely have bald patches by now. My rheumy has asked to see me early with a view to starting a biologic due to flares recently! Am assuming it maybe the Leflunomide causing it, so perhaps that will stop the hair loss if I get off it. I didn’t have ANy hair loss while just on the Pred. I hope your doctors start to listen to you soon and advise you on the best way forward on how to cope with these side effects or changes to your meds etc. Best of luck! 💕 xx
I have stopped the Leflumonide. My rheumatologist doesn't know. I see him in 3 months. I have also started Vit D and Zinc as my bloods were low. This may help too. Hopefully when you go on to biologics the hair loss will stop.
I am worried that once I taper the prednisone my inflammation will get high. I don't qualify for biologics.
Thanks for that info Peep44, it’s so difficult to know what’s for the best sometimes. Wish you could get an earlier appointment with your Rheumatologist maybe he can offer you something different to help with th inflammation ? I’m not sure myself about biologic drugs but think rheumy quite keen - I see him next Friday so will see what he suggests. Hair still coming out by the handful but will survive it for a few more days. I thought as long as you tried at least one of the DMARDS (like Leflunomide/Methotrexate etc) and it was unsuccessful, you were deemed to be suitable for a biologic? I know with NHS they are reluctant because of the cost apparently , in uk anyway, but if you need it you need it. Would they reconsider if Leflunomide not working well perhaps? Xx
I'm in NZ. I gave had hydroxychloroquine, Sulphasalazine, Methotrexate, and Leflumonide. I don't know how I qualify for the next step. Maybe erosions on an xray....
I know exactly how you feel. Loss half of my hair due to a migraine med. Stop whatever is making you lose your hair. google the medicines you take for hair loss. On Amazon I purchased shampoo called PURADOR advanced therapy shampoo and conditioner. 9 months later my hair is getting thicker. My heart aches for you. Look me up on Facebook so I can keep up with you. Rose Hemenway, pic of me dark hair/white flowers around pic. picture is on dark side. I am not one for picture taking.
Hi. I am still taking the same meds, but the vitamin D has made a big difference. My adrenals are now working enough to taper down the prednisone. My hair is not falling out like it did. It has gone from straight to curly. It is pretty wild! I see your taking omeprazole. I am on this too. I never though that this could be the problem. I might cut it down to one a day. I don't want my hair to fall out like is was before!
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