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Old 07-09-2012, 08:22 AM   #16
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blb2037 HB User
Re: Sjogrens and hair loss

Hi again,
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.

 
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Old 07-09-2012, 11:48 AM   #17
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Re: Sjogrens and hair loss

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?

 
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Old 07-10-2012, 07:42 AM   #18
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Re: Sjogrens and hair loss

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.

 
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Old 07-15-2012, 08:21 AM   #19
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Re: Sjogrens and hair loss

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.

 
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Old 07-17-2012, 08:53 AM   #20
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Re: Sjogrens and hair loss

KJ44,
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.

 
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Old 07-17-2012, 09:02 AM   #21
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blb2037 HB User
Re: Sjogrens and hair loss

Knot,
Thanks for the information re the shampoo, I will give it a try although the Plaquenil seems to have slowed down the hair loss.
I thought I was home free, but the past few days the skin problems have surfaced again. My eyelids split in the crease, so do my lips at the corners, rash on my ankles and discoloration. Does anybody have the discoloration around the ankles and on the tops of the feet and toes? I am very afraid the fatigue will come back but I guess I have to have faith in the drug for now.

 
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Old 12-10-2012, 09:40 AM   #22
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Re: Sjogrens and hair loss

Hello: I have been experiencing hair loss for about 2 yrs now at least since I noticed . I was diagnosed with Sjogrens just over a year ago. I am on a continuous mission to find a "cure "or anything that will help with the hair loss. I am getting pretty thin on top and I had very thick hair before this all began. It is distressing and embarrassing. I hate washing my hair and seeing it in my hands. I am washing it only once a week now. I have tried or am still on Viviscal, zinc , biotin, other herbal stuff etc. I am now using a laser comb- 15 minutes a day and just started this about a week ago. They cost $450. to purchase, I am fortunate a friend of mine has loaned me hers. If it works I will buy one! I have spent thousands of dollars already trying to fix this and it is most discouraging. Please , anyone do have suggestions. ? thanks for your help
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Old 01-09-2013, 12:00 PM   #23
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Smile Re: Sjogrens and hair loss

Quote:
Originally Posted by bellacec View Post
Hello: I have been experiencing hair loss for about 2 yrs now at least since I noticed . I was diagnosed with Sjogrens just over a year ago. I am on a continuous mission to find a "cure "or anything that will help with the hair loss. I am getting pretty thin on top and I had very thick hair before this all began. It is distressing and embarrassing. I hate washing my hair and seeing it in my hands. I am washing it only once a week now. I have tried or am still on Viviscal, zinc , biotin, other herbal stuff etc. I am now using a laser comb- 15 minutes a day and just started this about a week ago. They cost $450. to purchase, I am fortunate a friend of mine has loaned me hers. If it works I will buy one! I have spent thousands of dollars already trying to fix this and it is most discouraging. Please , anyone do have suggestions. ? thanks for your help
I, too, have Sjogren's and hair loss; and have contemplated purchasing the laser comb. Please update us if it is working for you!

 
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Old 01-16-2013, 07:05 PM   #24
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Re: Sjogrens and hair loss

Yes, gpooch I will let you know if the laser comb works when I specifically notice a difference. take care and hang in there.
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Old 01-17-2013, 01:24 AM   #25
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Re: Sjogrens and hair loss

Quote:
Originally Posted by bellacec View Post
Yes, gpooch I will let you know if the laser comb works when I specifically notice a difference. take care and hang in there.
Thank you for responding! I know it takes a few months before results can be seen. Yes, I saw in a previous posting that you are female

Good luck with results; I'm hoping you'll see hair growth!

 
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Old 01-17-2013, 04:30 AM   #26
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Re: Sjogrens and hair loss

Hmmm, I'd also try it

 
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