A puzzle of scalp issues

[trc1962]

Hi and happy Saturday! I haven't posted for awhile, however, something has come up that I needed to put up to get others input. I have gotten so much info from these boards over the years that has helped me survive having sjogrens and working.

I have had a scalp condition for 20 years and it has caused hairloss and pain. The derms and doctors never really knew what it was and they finally called it seborrheic dermatitis. Mine came on when I first had sjogrens symptoms 21 years ago. I have treated it with hormones and spironolactone with mixed results and have kept enough hair to not have to cover it. I also have to watch my diet as I don't do well with histamine laden foods and my scalp screams and I lose hair. What really helps is prednisone and when I needed it for a flare my scalp pain was gone and hair regrew. My mom had no hair issues all of her life, full head of hair and only mild rosacea. Last year she received her first booster for covid and she experienced my symptoms to a "T" scalp pain, throbbing and hairloss. Like me the doctors don't know what to call it and it is very hard to live with. Mom has RA, celiac disease and a degenerated spine. I have sjogrens, gluten intolerence, mast cell disorder. Any ideas? It appears to be triggered by an immune response. Thank you, we are both looking for answers.

[ToniiiMack]

Gosh, I wonder?  I don't have any answers for you but my scalp itches and gets sores and drives me crazy.  But I haven't had hair loss.  My daughter has seborrheic dermatitis so I tried her shampoos and they didn't really help.  So I'm wondering if this is due to Sjogrens?  I hope you and Mom get some answers.  Good luck. 

[meirish]

I have had some hair loss to the point that I wore a cap for about 1 1/2 years. The strange thing is it was only on the right side of my head at that time. I thought it was from my thyroid disease. I also have suffered from much scalp itching and I don't have any dandruff or scalp disorder. AT one time I had to have steroid infusions once a month for autoimmune hearing loss and my doctor was in hopes that this would stop the severe itching and questionable nerve pain in the scalp. It did not.

I have been on IVIG at large doses once a month since 2006 for my myasthenia gravis and this sure didn't help either. Recently my son with thyroid disease developed bad Hashimotos (as I do) and my beautician has a friend with thyroid who also has bad itching and other scalp symptoms. So, my thought was that this could be thyroid.

I have finally come to the conclusion that it must have something to do with autoimmune disease as it wanes and ebbs like autoimmune diseases do. The best thing both my son and I have found that helps is called Sea Breeze which is a sensitive skin astringent. I get this at Walmart and it does give some relief. I have also rubbed OTC cortisone cream 1% on my scalp. This helps for a little while at times. Seems like something just needs to be done and a person gets desperate.

I have also wondered if this could be a type of neuropathy of the scalp as it feels like a type of nerve pain at times. I wish that there was something I could tell you that really works. I just hope and pray that you can keep what hair that you have got. Good luck and let us know if you find that "miracle. meirish

[trc1962]

Thank you for your replies, it helps to hear from others who have experienced some of the same symptoms. Both my mom and I have had very bad throbbing pain at times, bad enough to hold ice on it. I wonder about lichen planus, but I don't know, and the doctors don't either. I did get extreme relief from oral prednisone, but the infusions did not help at all. I don't think there is a miracle out there, but if the pain would stop and the hairfall continued I could at least cover it. It could be neuropathy related as that is my biggest sjogrens symptoms. Many thanks to all for the answers.

[meirish]

Have you ever been on Gabapentin or any drug used to deal with neuropathy???I am sure you would have been but thought I should ask. And yes, there has to be something out there. Take care meirish

[trc1962]

Irish,

I take 100 mg at bedtime for neuropathic pain and I haven't noticed it helping, but i will pay more attention. It does help small fiber and during a flare i take it 4 or 5 times a day to get through. Thank you for the idea!