Question for those of you who has or had this problem, I may be paranoid but does your hair come out all at once or alot at a time or did you just noticed a little more hair in your brush and in your sink more than usual?
Hi Barbara,
I'm a former hair stylist and it's normal to lose 50-100 hairs/day. I have found that when I make any major changes to my medications, that I have noticed more than that, but for me it has been gradual and not in clumps.
Hope that helps!
Maren
Thank Maren.
it dose I’m just hoping it’s nothing more than me being paranoid , I’m going to keep my fingers crossed
Honestly, I think that I lose more hair from anxiously fiddling with it than from my meds... BUT I think that my medication makes me anxious, so it's kind of a double edged sword.
Hello, Barbara--Have read that there can be "overlapping symptoms" with autoimmune disorders. For example, hair loss is a frequent symptom of hypothyroidism. With my version of polymyosits, I experience a symptom often associated with rheumatoid arthritis--feeling sluggish until mid afternoon.
All my best, Nell
I’m tired all of the time I get to work and I doze off and have no energy, in the afternoon I doze off have no energy .I have to pushy myself to do anything some time I want to cry I’m so tired and I’m a caregiver.But I have had my thyroid checked and it’s ok , so hopefully I will find out soon what’s going on
I actually was diagnosed with Fibromyalgia as well as DM and take a drug called Gabapentin that helps me with the exhaustion, but it's never 100% or like I felt before I ever got sick. I'm sorry that you're going through that as well.
You are not paranoid Barbara. Living with an autoimmune disease is bad enough without having to deal with the thinning of one's hair. I experienced a double whammy of gradual thinning. Pre ASS I was diagnosed with hyperthyroidism which had already taken its toll on my hair then, when diagnosed with ASS I was put on methotrexate which also thins hair. I do take zinc and selenium which helps. Over time it has improved considerably which I hope will happen in your case.
My Dr told me to get Hair Skin and Nails from the store most stores carry it, it has Biotin in it and is good for the hair and he also told me to up my folic acid some. This is in pills OTC. Now this is what he told me to do my hair is thinning but not real bad but the hair does not feel so soft as it usually does. Hope this helps you might just try it good luck !
My hair has also gone every thin and so dry (like straw) from the steroids and immune suppressant drugs. I also take a good vitamin supplement and folic acid, as well as a good healthy diet, but I can’t see it improving whilst I’m on all this medication! 
When I was on high doses of prednisone and methotrexate I definitely had hair coming out in large clumps. It thinned out but not enough to be noticeable. Once the meds were lowered the problem went away!
Thanks Nichole… When I got down to 5mg a day of prednisone my hair started to recover a bit, but I’m now up to 20mg as I’m currently having a flare.
Nichole, what strength meds are you on now and did you have any scalp issues? My hair continues to thin even though I am done with prednisone and I am on Methotrexate and take folic acid and biotin. Did your hair come back or not? I have been dx with amyopathic Dermatomyositis.
Right now I’m still on Methotrexate, immurane, folic acid and Rituxan IV treatments. My hair came back but is still thin. I’ve lost chunks of my eyebrow so have to use a filler to make the, look decent.
Marie said:
Nichole, what strength meds are you on now and did you have any scalp issues? My hair continues to thin even though I am done with prednisone and I am on Methotrexate and take folic acid and biotin. Did your hair come back or not? I have been dx with amyopathic Dermatomyositis.
I’ve switched to methyl folate b vitamins and I’m finding my hair is really improving. Also I’ve been doing lots of green juices… diet and nutrition is key to improving your hair.
Alison , where do you get methyl folate b vitamins? OTC?
The only time I lost hair was when I took the 6 rounds of chemo but it has grown back.