Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Muscles & Bones
/ Sjogren's Syndrome Support Group

whining

yayajanet
yayajanet
I need to whine just a little. I went to see the rheumatologist last week and he confirmed SS but said that the side effects of medication for my mouth (artificial saliva) were worse than the sore mouth. I am okay with that but today my tongue hurts so bad I just need to whine about it. This does not happen every day. I can go for many days without a sore mouth but on those days other symptoms are greater ( dry eyes, fatigue, intestitial cystitis). I would rather have any of those instead of the sore mouth--it is hard to talk. Thanks for listening
jltraw
jltraw
I have to say that the whining is really a better alternative to the meds. I took salagen to increase the moisture without realizing that it actually pulls moisture from other areas in your body. Yes the mouth was much better but the price was high. I ended up having kidney stones by the 100's and now my kidneys are only functioning at 40%. Beware! They tell you about sweating and other things but they never told me about this and it SUCKS!

I had cracks in my tongue and couldn't eat and barely swollow it was horrible and the sores were in my mouth and throat. I can tell you I now take folic acid everyday now and I rarely have problems with the soreness. You just have to find what works for you.

Well Wishes
Jackie
yayajanet
yayajanet
Thanks, I have heard of taking folic macid. Is it safe? I might try it.

God bless you
jltraw
jltraw
I haven't heard of any negative side effects from folic acid and I haven't experienced any myself. Worth a try.

Good luck
Jackie
deleted_user
deleted_user
I think I will try the folic acid also. One thing you can do on your own to incresae the saliva in mouth is to gently massage from base of ear to throat several times a day and also chew sour gum. It is also good to take fish oil caps. I take omegas and flax seed oil daily. I also take an eye vitamin and lutein-z. It really helps me. My eye Dr recommended this. hugs