Hair Loss

Does anyone else experience hair loss during a flare? It is extremely frustrating.

Would it be possible for individuals to indicate whether they have primary or secondary sjogren's? I ask because I have primary and my condition is static, chronic and flare-ups don't really happen. Some days are better than others but I don't have anything like a flare-up.

Maureen; I suffer from hair loss too.....especially in the front.

GuinevereP as I have to find out the difference between primary & secondary sjogren's.

Primary Sjogren's is diagnosed when you have no other autoimmune disease. Secondary when it is diagnosed when you have another disease like rheumatoid arthritis. This is a simplistic answer but nonetheless pretty accurate. I ask because many of the people on here indicate they are taking drugs that I know aren't prescribed for Primary Sjogren's.

I have secondary sjogren’s. I don’t have hair loss but I do have extreme shedding. Even though I have secondary sjogren’s it affects my life so much. The coughing and lung issues, mouth dryness, eyes and tummy troubles.

I have Primary. I have flare-ups especially after surgery. What are the meds for Primary besides Salagen (Pilocarpine)?

I have primary, also, but I do have flares (worse joint pain, worse interstitial cystitis, worse headaches, worse dry skin, etc.). The hair loss started about 10 yrs. before I was diagnosed with Sjogren's. I now have about half as much as I had 10 yrs. ago. And it is constant. Every time I comb my hair or even run my fingers through my hair. It is all over my head, not in spots. Pilocarpine is just for dry mouth and dry eyes. I don't think it helps with any of the other symptoms. As for their description of what is Primary and what is Secondary, I have many other problems (ulcerative colitis, insterstitial cystitis, for instance) but mine is Primary because it was not BROUGHT ON by another disease. You CAN have Primary in conjunction with other autoimmune diseases (it happens). But the Sjogren's is probably what brought on my other problems instead of them CAUSING the Sjogren's. I had the right markers in my blood for it to be Primary as opposed to Secondary.



Maureen said:

I have Primary. I have flare-ups especially after surgery. What are the meds for Primary besides Salagen (Pilocarpine)?

I had oral surgery a year and a half ago and had SO MUCH swelling in my face and down into my neck that my vocal cords were damaged and I lost control of my voice to the point that I could not sing anymore. It took 6 months for me to regain my voice. I had sinus surgery 6 months ago, and now I have lost my sense of smell and because of THAT I have lost most of my sense of TASTE. Surgery is BAD NEWS for Sjogren's patients.

You know that we would have a New York Times bestseller if we published a book about symptoms of Sjogren's using the blogs!

It is comforting to know that others experience the same symptoms and you are not crazy although many health professionals discount this disease and its symptoms. One of the most frustrating statements I heard from a doctor is...It's no big deal!" Walk a mile in any Sjogren's patient's shoes.

I fell down stairs last month and my hair dresser told me I have half the hair I had last month! In checking the Internet, hair loss can be caused by trauma.

I totally agree about the trauma part. I became sick about a year after my mom passed. I was her caretaker. After she passed, my dad moved in with my husband and I. But, I also think SS is traumatic within itself. I feel like my body & mind are traumatized. For some strange reason, I subconsciously NEVER thought this would happen in my life. It's a hard pill to swallow. But, it is what it is.......

Hair loss is traumatic in itself! But I believe if it's trauma hair loss, your hair should at some point come back. Mine never did and continues to fall out. I am also losing my eyelashes and eyebrows.

Thank you. Very well stated for brain fog...LOL!

Della said:

I have primary, also, but I do have flares (worse joint pain, worse interstitial cystitis, worse headaches, worse dry skin, etc.). The hair loss started about 10 yrs. before I was diagnosed with Sjogren's. I now have about half as much as I had 10 yrs. ago. And it is constant. Every time I comb my hair or even run my fingers through my hair. It is all over my head, not in spots. Pilocarpine is just for dry mouth and dry eyes. I don't think it helps with any of the other symptoms. As for their description of what is Primary and what is Secondary, I have many other problems (ulcerative colitis, insterstitial cystitis, for instance) but mine is Primary because it was not BROUGHT ON by another disease. You CAN have Primary in conjunction with other autoimmune diseases (it happens). But the Sjogren's is probably what brought on my other problems instead of them CAUSING the Sjogren's. I had the right markers in my blood for it to be Primary as opposed to Secondary.

My eyebrows are REALLY thin now. I have to darken them or I look so much older.

Della said:

Hair loss is traumatic in itself! But I believe if it's trauma hair loss, your hair should at some point come back. Mine never did and continues to fall out. I am also losing my eyelashes and eyebrows.

I have primary ss and yes I do have hair loss during flares it seems. Sadly I haven't seen any of it coming back which is horrible since I have always had very fine hair

Has anyone tried something I recently heard about - eyelash extensions? Supposedly, they help your eyes to produce tears again.

I have primary and I definitely go through flairs. I do go through periods of extreme shedding too, which drives me nuts.

As for eyelash extensions, I had them for about a year. I stopped in the fall but am about to go back to it for the summer. I was lucky enough to find someone who makes them look amazingly natural. (even the women in the hair salon I go to rave about how they look). They never did a thing for me as far as helping tears. I have a theory, though it may be dead wrong. When I have them on, I don't need eye shadow or mascara at all. I use a touch of eye liner and I'm good to go. Without them, I need more makeup….which means I have to actively use Occuscrub or else I wake up with very crusty eyes. I also notice the difference in how well Restasis is working if I don't clean my eyes well. It may be a trickle down effect that there is less stuff to block the ducts. I dunno. Anyone else with the same experience?

I was diagnosed a year ago, but have had many symptoms for probably 30yrs. Hair loss began about that time. I wear wigs and hair pieces now. My hair loss is constant, but mainly on the top of my head. I don't know if I have primary SS. My Rheumy did mention RA in my blood test results. He never used the words primary or secondary. I do have Osteoarthritis.