Hair Loss

This year I have noticed much hair loss only on my head. At 1st I wasn't sure but now I am. I had lots of hair & now I have thinning spots, mostly on the crown of my head. I was diagnosed by the cornea specialist with Sj this year at the age of 60 after many years of treating all the symptoms separately. I have had some blood test for Sj, RA, & Lupus with all negative results. My PCP suspects Crest disease because of the hair loss & the sores on my face. I will be going to an RA who specializes in Sj to see what else may be going on & to treat the Sj. I suspect I may have Lupus. Does anyone have these symptoms(hair loss & face sores) with Sj or Lupus? I suspect I may have lupus despite the negative test results. Did anyone test negative for lupus & then tested for it again (or have a different test) and get positive results for lupus? I also have gastro neuropathy, non-specific motility disorder of the esophagus, chronic pancreatitis, etc.. Thank you for any replies.

P.S. It would be nice if a doctor with advanced knowledge & experience with all of this gets involved with these discussions, just to give us a list of specialist & where they are located (so we could try one on our own so that this doctor would not have any liabilities - he wouldn't be referring us to a particular doc but just giving us a list. I would like to ask a doc with this illness, what doc he see as a patient?!)!

Hi - I know I’m late in adding to your discussion - new to this site! I have Sjogren’s and have hair loss from it. Not just thinning, but it gets very brittle and breaks during bad flares. My hair stylist suggested I try getting a Boar’s Hair brush and I’ve had good results from daily brushing with it. It was extremely expensive (I got a good brand), but it was worth it. It stimulates the hair follicles and my hair seems stronger and shinier. I also use Rogaine which actually helps, too. Good luck -

As an added thought, when I started having hair loss due to side effects of meds, I was put on prescription strength folic acid, 3mg/day, and biotin. Haven't necessarily grown back hair, but it definitely slowed loss.