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Knot 03-12-2012 07:32 PM

Hair Loss
Hi, I am wondering what anyone can tell me about hair loss in Sjogrens. I have been having this problem for a few months now. My Dermatologist did some injections in early Feb, as well as a topical to use nightly on my scalp. It seemed like it was working (I was no longer balling up a "wad" of hair every time I washed it) until I was on my week off.(I use it for 3 weeks, then off for 1) Now I am losing some again every morning. Not as bad as before, but enough to be distressing. I'm afraid I may go bald! What can I do?

sjogrens 03-25-2012 05:38 AM

Re: Hair Loss
Are you on any treatments for your Sjogren's? Some people seem to experience less hair loss with Plaquenil once the systemic inflammation is under control. I have hair loss too -it's definitely distressing! What treatments are your dermatologist using?

Knot 03-26-2012 01:01 PM

Re: Hair Loss
Hi Sjogrens, Thanks for your reply. Yes, I am on Plauinil (spelled wrong) I began taking it in January of this year, but my hair loss began much more before that. It became very prominent in November and December, but I had suspected it months before that. By Jan I had a small patch on the left that was almost completely bald. Since then it has become kind of all over (with some spots worse than others) I also have lost most of the hair on my legs and "other parts" of my body. I had also recently noticed my eyelashes thinning out particularly on the left eye. I think that perhaps it is beginning to lessen somewhat. At least the amount of hair in the shower is less and I haven't noticed eyelashes falling out for a couple weeks. My Dermatologist gave me injections (not sure exactly what he used but it was anti inflammatory in nature. They can only be used every 4 to 6 months. The topical that he gave me is called Mylan-Clobetasol. I use it nightly before bed for three weeks, then off for one. I have also started taking Biotin (a supplement) and I think it may be helping as well since I noticed that the hair loss became worse when I ran out and didn't take it for awhile. I take 5mg's a day of that. It is quite a high dosage and one that my Naturopath has recommended for me. (I would never take one that high on my own) I live in Canada so I am not sure what treatments you may have available.(Maybe more if you are in the States). Sorry to hear of your hair loss, it is a pretty distressing problem. I have recently been in touch with someone from the Sjogren's Foundation and she tells me that she lost a lot of her hair too, but that it did come back. But curly! So I think that is hope for the rest of us... I wish you well. Let me know if you find any possible solutions.(I will do the same for you) Knot...

bellacec 04-06-2012 09:18 AM

Re: Hair Loss
I too am distressed about my hair loss. I am taking silicea for about 4 months now. not sure if it's helping ( maybe a bit) I also take a B12 and complex B as well as Zinc(I just started that-supposedly it helps your hair too.) Hair is still coming out but not as fast.My hair is not the same, it is lifeless and listless and it has no body left. I used to have a thick head of hair and pray everyday that it will grow back. I almost cry everytime I wash it. I see a naturopath but he never recommended Biotin, he treats me with his own homeopathic remedies that he makes up. I now have a problem with Xerostemia and just got some ointment form him to hopefully help with that. If anybody out there has a remedy , please let me know. Any other suggestions would be helpful. thanks so much

Knot 04-09-2012 08:26 PM

Re: Hair Loss
Hi, You know I have heard that silica is supposed to help with this problem but haven't tried it myself. I'm not sure if the Biotin is helping or not. My hair loss seems to be worsening at the moment. My hair has seemed to improve as far as dryness goes though. Like you I have always had very thick hair with lots of shine and body. It's nothing like it used to be. I have been using Nioxin shampoo but I haven't found it to be of much benefit. My Dermatologist doesn't recommend it as anything that will help. I have heard that sulfates can cause hair loss, so my next step is to try a sulfate free shampoo. My hair loss had been much less about a month ago. Not sure what is going on. It seems to be concentrated on the left side of my head. I suppose in the back of my mind I think "what if it's female pattern baldness?" It doesn't run in my family. But who knows... I see my Rheumy next week. I'll see what he thinks my next step is. The most recent thing I have noticed is that my nails are starting to split and peel. My nails have always been strong and grew very fast. I am an avid gardener and very rarely had a split nail, and now they have turned to "crap" too. Frustrating... but not nearly as much so as the hair. If your mouth is dry you may want to try a product called "Mouth Kote" It's a spray and I keep it in my night stand. It's handy when you wake up with a really dry mouth in the night.
Hope something here will help... any info you can share will be very appreciated Thanks... Knot!

bellacec 04-11-2012 10:23 PM

Re: Hair Loss
Hi Knot: I just purchased something new "bio fen plus", $54.00 for 30 capsules, it will take 3 months before results show apparently. It is an herbal remedy so not harmful and has biotin in it plus a lot of other good stuff. I figure it can't hurt and hope it will help!!
As a female, I feel horrible and feel I look terrible now. My friends assure me that is not the case, but it's hard when you have had good hair all your life and then gone!! My nails have always been soft and they split and peel also, nothing new for me.

Knot 04-14-2012 07:54 AM

Re: Hair Loss
Hi Bellacec, I just looked up "Bio Fen Plus" on the internet. I hadn't heard of it. It does sound like a good product. I feel for you. Female hair loss is awful, and it doesn't matter who says "you look fine" or "No one else sees it". It really does make you want to panic. I keep holding out hope that it will stop. I have talked to another Sjogrens patient and she says that hers stopped with treatment and it has all grown back, so there should be hope for us... Are you on any meds for Sjogrens? My Rheumy is hopeful that if we get the inflammation under control it will grow back. So far I am lucky, I have no scarring and apparently that is a good sign. Oh , I also take Meriva (turmeric) It is supposed to be good for combating inflammation. As well as omega oils. Anyway, please keep in touch and let me know how it goes. If I find anything helpful I will pass it on to you. Thanks, Knot

bellacec 04-14-2012 08:49 AM

Re: Hair Loss
Good morning Knot: I am on no treatment from a rheumy , he is the one who gave me final diagnosis only and I was his first diagnosed patient. He did not recommend meds,(all meds have side effects and I figured I had enough on my plate with Sjogrens) so I went the alternate route and to a naturopath. I am on homeopathic remedies only and supplements. Omega 3, (5000 mg day) emu oil capsules, b12, complex B, silicea, and now bio fen. I do not have inflammation. My symptoms are dry mouth for 3 years now, dry eyes and hair loss. I will stay with the bio fen I just started and give it a good shot for 3 months anyway...ttyl thanks for your message .

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