So before I was diagnoses with sjs my hair was falling out / breaking off, after my sjs diagnosis and starting plaq it got better and my hair stopped falling out for 2 years. Now all of a sudden my hair is falling out in clumps. I can't comb my hair or style it in any way and even so it's falling out in an alarming rate.
I'm onplaquenil 400mg a day and have been happy with it helping my fatigue etc.
My question is do I call my rheumy about this or is there nothing she can do?
I would check with your rheumy and a dermatologist who specializes in hair loss. It may be a Sjogren's flare causing your HL, a reaction to meds, or another autoimmune condition like alopecia areata or alopecia totalis. I would also ask your rheumy or dermatologist to run blood tests for your thyroid and thyroid antibodies to rule out any problems with it. Good luck - and I definitely know how difficult hair loss is :(
My rheumy told me to take Biotin (available in drugstores) for fixing your hair, or mine rather. I also take Plaquenil, methotrexate and quite a few more meds. I ddn't have much hair to start with and then I had to have treatment for SJS (4 years) and cancer (4 1/2 years ago-radiation and some systemic meds.) I wish I coult tell if it has fixed my hair,or not, but I haven't been real compliant on my dosage. It's worth a try and I'd try for a few months. It's not too expensive. Luc
Yep, I'm another one with a lot of hair loss over the years, and I'm with mshistory, can you see your doctor about it (it can be related to a lot of things, and I'm not in the medical field so I can't diagnose)?
Good luck at the doctors, and don't forget to keep us updated, okay?
Take care now -
Patze
This may sounds weird but I've noticed the last few years the hair under my arms is not growing at all I didn't do anything special with it. No complaining about that mind you as I don't have to shave.
I have noticed my hair being thinner and I use a moisturizer more often on it. Course I keep the moisturizer companies in business with the amount I use. ;)
I taken Biotin..it seems to help..you can get it over the counter at any drug store..I take 5000mg a day...I take 200mg of Alpha Lipoic Acid with it.
I would check with your endocronologist...have every hormone tested in your body
gursie
Hi bigBOO
Like the others, I reckon you should get this checked out because any change is telling you something. But who knows what?!
Like Pisces I've noticed that I don't need to shave under my arms any more. I thought it was maybe due to hormone changes - I'm 51 - but maybe it's not.
Does anyone else notice changes to body hair when they're on Prednisone/Prednisolone? The hair on my forearms can thin out and then - generally if I change my steroid dose - it suddenly increases and is very dark. Anyone else experiencing this?
Chickpea
My regular doctor reduced my thyroid meds from 125 to 100 and Ive noticed not only hair loss but eyelash loss...I just got a new prescription for 115 to see if some of it will come back. Half of my eyebrows are long gone.
It could be your thyroid.
I know when I went into instant menopause...hardly no hair under my arms anymore, and legs much less than before.
Docs said its hormone related..for sure. Also, hardly have no hair my head either, and that started when my testosterone use stopped.
I know low DHEA causes hair loss. When mine was much higher, hair was so much better. Now, its almost at 0.
Gursie
I went into a flare and lost a large volume of hair. When I was put on high doses of prednisone for the flare my hair grew back. It also grew back curly after having very straight hair my entire life.
best wishes,
also try using Nizoral shampoo or other dandruff shampoo. My hair loss slowed down when I did that. Yeast can cause hair loss.
Pices, Chickpea and Gurs:
Since my instant menopause (13 years ago) my body hair has really gotten less, too. I thought it was a fluke thing with me. Hair loss on my head comes and goes (?????), but luckily it is thick enough that it is not too noticeable. But, body hair... just don't understand that unless it is hormones.
I asked my rheumy about my hair loss on my head, eyebrows, eyelashes, etc, and now no underarm hair, faint leg hair, etc and she said its most likely hormones, which I guessed. Im actually going to see this top endo today after waiting 3 months. I know my thyoid is NOT working not matter what the tests show..its shows Im low in the free T3 etc? getting different answers from different docs on this. Hopefully, this doc will be able to help. I also have another hormone doc to see to try and get my HRT right.
Granted, the steriods dont help either. My strings (hair..ha ha) as I call them now, and much drier since using them. I think they interfere with hormones too?
Ughhhhhh....autoimmune and hormones...what a battle!!
Gursie
As I look through these posts, it appears that many of us are postmenapausal; this alone can cause hair loss, me included, and hormones are a part of it.
But I feel for you younger gals who can't blame it on getting old. SJS certainly does strange things to our bodies. We have to keep asking questions of the professionals and hope to get some answers eventually.
Has anyone with hairloss issues tried "HERS" hair regrowth? If so had it stopped the massive amounts of hairloss?
I also have dealt with hair loss and it is frustrating! I am super sensitive to iron levels in my body and weight loss can cause me to lose hair as my iron drops. Doctors often test for iron levels, but they also need to check your stored iron, or ferritin as that causes hair loss. Having your hormones is needed as others have commented. I also regrow hair on prednisone and my scalp and hair improves on it immensely. Good luck!