Hi - I have had a lot of hair loss as well, and my first diagnosis was Sjogren's. We now think I have an overlap of Sjogren's and lupus, but my rheumatologist told me that hair loss can definitely occur with Sjogren's and that some people are helped by Plaquenil.
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Thank you for your response. I never really noticed dry eye or mouth, however now I feel as though I could have that. Did your symptoms come on suddenly? I noticed hair loss three years ago, however I never noticed any other symptom.
I did not have dry eyes or mouth when I was diagnosed last year either. My symptoms were fatigue, hair loss, joint pain and swelling, IBS symptoms and a persistent dry cough but my mouth did not feel dry. It feels somewhat dry now, but I think that's a side effect of some of the medications I'm on.
I was immediately put on Plaquenil after my lab work came back so elevated (ANA, SS-A, RF, SED) and in the past year, my symptoms have continued to worsen at an alarming rate. Joint pain and fatigue have gotten much worse, I've developed pulmonary disease, skin rashes, run fevers almost daily.
A lot of the literature out there claims Sjogren's is a slowly progressive disease, but I've known quite a few people who have had a very rapid progression with their disease. It's a very individualized thing, just like any other disease.
I saw a dermatologist the other day about my rashes, and she mentioned there are steroid creams that might help with hair loss related to AI diseases - I'm not sure how those are applied, but it might be worth looking into (I'm going to try to get my rashes under control, then I think I'll ask her about it for my hair/scalp).
Hi, I too suffer hair loss. It has been very distressing. I have seen a dermatologist and was given injections as well as a topical that I applied at night for three weeks and then one week off. It seemed to help and my hair stylist says I have regrowth. Lately it has gotten worse again (along with other symptoms) so I am not sure if I am in a flare or if the Plaquenil is not working for me. The Dermatologist I saw seemed to be having a bad day when I saw him this week (that is a gross understatement) so he wasn't really any help to me in my followup. He said the treatment had worked but ranted on about other things it could be including ranting about his wife seeing a moose that was really a coyote.(sorry, some "venting" there) Anyway, I plan on finding a new Dermatologist and trying to see if they feel further treatments could help. Initially. this guy had said if the treatments worked we would continue them. He didn't offer that option on my return just told me to accept it. I have also tried using Biotin, and sulfate free shampoos. I think that the Biotin helped marginally and that using Nioxin shampoo was somewhat helpful. Not so sure that the sulfate free shampoos have made a difference. I know it's hard but try not to be discouraged. I plan to keep trying to find a solution. That's why I like this board. It's nice o be able to share with others and find the support of people with the same issues. I wish you well, and if I find anything that works I will post it....Keep in touch.
Thank you, Knot. That is helpful. While on Plaquenil did you notice any weight loss or loss of appetite? I read that Plaquenil can cause hair loss (which is not the direction I want to go int) but it also states weight loss and I wonder if there is a correlation. I definitely am afraid to go on anything that will increase hair loss.
I read that others are on Prednisone, which increases hair growth, however may cause weight gain and a moon face.
Obviously, it's important to treat the real issue, and I don't mean to sound vain, but reading up on all of this discouraging..
I'll let you know what I hear from the Rheumy. Thank you, again.
Thank you, Sjgorens. I am experiencing some joint pain in my wrist..I thought that I had carpal tunnel, and never thought to mention it to my doctor..I guess I have been noticing that for the past 6 months, but more recently it's everyday pain.
Other than that..I guess I could have dry mouth, but I drink so much water I may not have noticed. As far as IBS symptoms..years ago I was diagnosed with IBS and it seemed to go away, however now I do notice some of those symptoms coming back.
Thank you again for your response. It's helpful to hear what others are going through.
Hi again! I was experiencing weight loss and hair loss before I began Plaquenil. It was why my Rheumy put me on the med. I have also read that Plaquenil can cause hair loss and I am wondering if it is contributing to my problem at this point. I have spoken to someone else who had hair loss and the plaquenil stopped it ( I suppose it helped controlled how active her disease was.) I am wondering if my med needs to be changed. I think it's all a bit of a "crap shoot" and sometimes we have to try more than one thing before we find the answer. I was put on prednisone briefly last year and it was horrible. It just "strung me out" and made me feel "crazy" plus I couldn't sleep at all even when I took it in the AM. It also made my heart palpitations worse. I quit that right away. As for appetite, mine may be decreased a bit, but nothing that has caused me concern. Overall the Plaquenil has not given me any side affects that I am aware of. Before I started it I had lost 13 pounds which was significant for me as I am pretty slim to start with. I think my weight has been more stable since I have began Plaquenil. But I still have to watch and sometimes supplement with a good quality meal replacement when I feel the need. My symptoms have been worse lately but I have also had shingles and a bladder infection recently. Things were pretty good in April (my last app with my Rheumy) but things seem to be changing quickly again. I need to go back. Try to keep your chin up and educate yourself as much as you can. I'm sending you good thoughts...
It's me again. My Dermatologist recommended using a different medicated shampoo every three weeks or so and to use it on my entire body. I find it has helped my scalp quite a bit. Since starting on the Plaquenil 3 months ago my hair loss has decreased. Stilll get a little rash mainly on my ankles. It has not helped the dry mouth and eyes much. I do have punctal plugs which are a life saver for my eyes. I have now started the dry cough which is very annoying. Whenever anything new happens to my body, I just chalk it up to Sjogrens.......that could possibly be not so good in that I or we could be overlooking a more serious disorder.
I have Primary Biliary Cirrhosis, but so far I don't have any problems with it, see my Gastro guy every six months and so far so good. Nobody knows which came first the Sjogrens or PBC.
We all just have to deal with this disease the best we can and share information regarding treatments that work for us.
My daughter has a chronic kidney disease and is on Dialysis three times a week. I fear for her and would trade places with her if I could. She is a trooper and when I whine about this ailment we have, I think of her and that brings me back to reality.
Blessings to you
Thanks for the input. It really is helpful. I have punctal plugs also. They have helped that problem as long as I still use drops throughout the day. What kind of medicated shampoo are you using? Is it a prescription? I have found a new Dermatologist who is giving me injections again as well as Rogaine (topically). I am willing to try anything. It seems to have slowed down again so my fingers are crossed. I have been feeling pretty sick again this week. I'm blaming it on the "end of the school year madness". I hope now that holidays have begun I will feel better again. Sorry to hear about your daughter. It must be very difficult. As a parent I think the hardest thing is to see your child suffer. (I'm sending her good thoughts) You sound like a great mom. Oh and good for you (on the walk) that sounds like a great challenge! You are an inspiration!
I use TGel for 3 weeks, then go to Head and Shoulders extra strength for 3 and another one which I am out of and can't remember the name. Just rotate. He (the derm) says that we all humans have yeast on our bodies, but people with Sjogrens can't keep it under control hence the need for the medicated shampoo. He says to wash entire body with the same shampoo and keep it on for 15 minutes! Right, who has time for that? So far the best thing I have found is the H and S xtra strength, but I hate the smell, so if I am going out with someone special, I use a good smelling shampoo.
As moms we do what we can for our kids, I have two daughters with the same kidney disease they inherited from their father.........it is dreadful and very life threatening, so that is where my focus is most of the time. Carol, my oldest has endured the ravages of a mishandled transplant and is no longer a candidate after almost loosing her life to negligence, so in the big picture, Sjogrens is a nuisence to me and nothing more. I may live to regret those words, but I just deal with it.
I am so sorry for those of us who have really bad problems with it. I have had Sjogrens for so long that it has become a way of life sort of like a pesky unruly child. LOL
After reading many of the posts re Sjogrens, it seems that there are varying degrees to this disease. Some people have light symptoms, but probably can expect it to progress over time...........to those with very severe problems. My worst problem has been fatigue, but again, the Plaquenil has helped a great deal.
I had very severe hair loss for several years, I left a trail of hair wherever I went, but it looks like the Plaquenil has taken care of it. I still loose hair, but not to the degree as before, and since I had very thick hair it is not quite so noticeable. I also quit coloring my hair and I do use over the counter medicated shampoo since I had terrible scalp problems which the Dermatologist said was yeast.
I have had yeast problems throughout my body, lungs, esophagus, skin and other parts. Don't know if it goes along with Sjogrens, but skin problems do present with the disease.
My doctor mentioned putting me on Plaquenil, we are waiting on blood tests and biopsies. I have been diagnosed with Sjogren's through a lip biopsy of the salavia gland, but since then I have developed a nodule on my thyroid in my neck; right above my collarbone, on the oposite side of my lip biopsy, and we are awaiting the test results for that. My hair loss is considerable, hopefully the planquenil will work on that for me too. After reading some on this forum, I agree with you blb2037 there are degrees of this. It makes me a little angry that I went to the doctor through the years with complaints and was sent away, now it is worse because I didn't get treatment sooner, my hope is that others will not have to go through that. Hopefully they can get this under control very soon, and I will feel better. Do you have fever blb2037? I am plagued with low grade fever of 99.5-100.8 that will not go away they are saying that it is the combination of my thyroid and sjogren's. Does anyone else have fever with this? Note: that I am not on medication other than tynol at this point, does the planquenil help with fever?