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.
The Following User Says Thank You to sjogrens For This Useful Post: June89 (06-29-2012)
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?
I run a fever occasionally, not very often and Alleve or Ibuprofin brings it down to normal.
It has been my experience that regardless of treatment, the disease progresses over time and new symptoms appear. I think the Plaquenil slows down the progress, but there is no cure, so we just have to keep looking for palative treatments to make ourselves comfortable. I drink a lot of water and suck on sugar free hard candies and chew sugarless gum. I rinse my mouth after I eat every time and take very good care of my teeth as they are at great risk of decay. See your dentist at least twice a year, and I also found that an electric toothbrush helps a great deal.
It is a learning process and a good Rheumatologist will be supportive. Mine thought I had Lymphoma at one time, but it turned out to be a liver disease, (oh joy) which I take a very benign drug and twice yearly ultra sounds and blood work, so far so good.
I hope you can find some relief with your problems, I consider that I am very lucky to have such good results with the Plaquenil and my wish for you is that it will work on your symptoms.
The Following User Says Thank You to blb2037 For This Useful Post: NBY (07-09-2012)
I think that running a low grade temp is not unheard of. I have noticed it myself on rare occasion. Although I haven't had it often enough or severe enough to consider it an issue (I seem to have enough other issues.) My Rheumy put me on Plaquenil when I was losing weight, hair, getting ne rash after another (some scar), having joint pain that kept me up at night, constant fatigue etc. I think it may have helped marginally, but I still have to be careful of my activity level and be very mindful about my diet. I have gone to an "eating clean" diet. I avoid refined sugar, anything from a box or can (processed in any way), alcohol, caffeine, gluten, night shade vegetables and animal products in moderation only. In short I only eat whole unrefined foods that are mostly plant based. It means a lot of prep work and a real change in lifestyle but it seems to work for me as I really notice an increase in symptoms if I stray from my routine. I am just recovering from a week of eating poorly and had to cancel going to a conference that I really wanted to attend. Live and learn huh... One strange symptom that I haven't had for a year has returned. I keep getting unexplained bruises on my arms and hands? I can sympathize with you about the time it takes to get diagnosed. My first symptoms began about 8 years ago. They were mild then but have become numerous and at times severe enough to cause me to miss work for extended periods of time. Mostly they were blamed on menopause.... very frustrating to say the least. Oh has anyone used Bee Pollen as a supplement? It's supposed to be good for energy. But I am wondering if it stimulates the immune system as they say it is good for the immune system. Thoughts anyone?
The Following User Says Thank You to Knot For This Useful Post: NBY (07-09-2012)
I have thought about the clean diet, but at 73, it will be very hard to make that change. Besides I live in New Mexico, what would I do without my nightshade green chili? I have cut way back on salt, meat and junk food, so that is my contribution! I have reflux really bad and find that beef really aggravates it. My hat is off to you for making the change. I think it improves a lot of things such as complexion, breathing etc.
One of my docs (there are so many) told me years ago to stay away from herbal type remedies because of possible negative affects to the immune system, espcecially Echinacea. He was a firm believer in alternatvie meds and took several natural supplements himself, so it was not a matter of conventional meds versus natural.
I try to be very careful what I take, as a result, other than my regular meds, I only take a probiotic and Caltrate with D. If you take any heartburn meds on a regular basis, do not forget to take a calcium supplement with D...........the drugs such as prilosec, tums etc tend to have a negative effect on your bones. Frankly the fewer pills I can take the happier I am. I sometimes feel as if I rattle when I walk.
Also, if you take Plaquenil, see your eye doc at least twice a year. There are side affects regarding eyes, such as the inability to see color. I have also gained some weight on this drug, but I tend towards a low body weight, so not a bad thing and my clothes size has not changed. I find that with diminishing tear production in spite of punctal plugs, I get frequent eye infections. I try to wash my hands a lot and discard eye makeup that is getting old, so I do see my eye doc a lot.
I have Sjogrens and also have hair loss...extreme at the moment. I visited my Rheumy at the Cleveland Clinic last week, and he says it is a part of the disease. I wondered if it was a side effect from my meds? He said "NO". I am currently on Evoxac, Plaquenil. Prilosec,and he just Rx'd Gabapentin for my burning mouth syndrome. I asked him if I would be bald by my next visit... he didn't seemed overly concerned and said I should see a Dermatologist if I was concerned. I find this disease to be very frustrating and painful most days. I have found a lot of relief with the plaquenil. I started it last October and over the past 2 to 3 months I finally realized that I don't have the fatigue I did last fall. I was to the point where a day of work fatigued me to the point of exhaustion.
I am very frustrated with my hair loss...I used to have a thick head of hair, beautiful and shiny. Now it is thin, wispy due to the hair loss and my part looks as wide as the NILE. I could just cry...but I have no tears! How frustrating!!! Some days I think my hair follicles hurt and then I notice the hair loss is worse...call me crazy, but it is true. I have totally changed my diet and am taking a multi vitamin. I hope it helps. My take on all the info my Dr. has given me, is there may not be much we can do for the hair loss.
So sorry to hear about your hair loss. I can appreciate how alarming it can be when you see so much in the shower/brush every day. I used to have very thick beautiful hair too. I just had it cut to a shorter version of a "bob" and that seems to have helped the look anyway. A dermatologist can give you injections which have helped me somewhat. My hairdresser has found some new growth although I still seem to be losing more. MY Rheumy says it is part of the disease and feels it will grow back (I'm assuming it will get better when we get the SS under control a bit more.) You can also try Minoxidil (Rogaine). I have just learned about a shampoo that is supposed to be very good. It's called Segals (I think thats the spelling) I looked it up online and it may be worth trying. I am seeing a Dr on the 25th who specializes in hair transplants and hair loss (I'm not looking for that, he's just supposed to be the top Doc in our area on hair loss and I want to get his opinion on whats happening to me) I'm going to ask him about shampoos etc. before I try it though. I am really hoping that he will have some real answers for me and help me figure out how to stop this. I will let you know what he says.