I haven't been to a rheumy in four years as I had an allergic reaction to plaquenil and at that time he said there really wasn't anything to help me.
I have a referral to see a new doc in my current city. I see different things mentioned here that you all take such as LDN, Evoxac, Pilicarpine and I don't know what else.....
So I'm curious what medicines that you find the most helpful for this condition?
Acetyl-L-carnitine, R-lipoic acid, omega 3
Joe,
Which supplements do you take for which symptoms?
I run a Sjogren's Support Group in Pittsburgh. Our next meeting is coming up on Feb.7th. The topic is "SJO" & Tell. We will be discussing effective meds, OTC products & supplements that help
battle Sjogren's symptoms. Can you tell a real difference from the supplements that you take?
Thanks.
SjoDry
I take plaquenil which helps with fatigue and joint pain. I also take evoxac which helps with my dry mouth and nose and salivary gland issues. I take supplements which I believe help also - Vit D, Vit B12, Omega 3, Magnesium and Iron. But NEVER start a supplement before checking with your dr - especially iron - too much can cause major problems.
I know some folks on this forum take cellcept or low dose naltrexone for sjogrens and have great success.
Wishing you luck. Keep us posted.
I take Plaquenil and daily low dose prednisone for joint pain, and I have lidoderm patches for when it is really bad. I use restasis for my eyes, Evoxac for my mouth...I have a lot of muscle issues and pain and I take zanaflex to help that, recently have added gabapentin (only up to 600mg/day right now) and that's helped too...I am starting cymbalta this week and I have hopes that it will really help with my pain level and also my anxiety which is through the roof, but obviously I can't say anything certain about it at this point...I've taken various supplements on and off over the years but I have stopped most as I didn't feel or see any benefits even after several months...I do take fish oil supplements and vitamin D but I do the fish mainly because my HDL cholesterol is low and I take the vitamin D to help my immune system keep me from getting sick. I give my whole family the vitamin D, even the kids...I take digestive enzyme supplements with heavy meals to help prevent heartburn, I have heartburn ALL the time, and I have recently started oil pulling.
This isn't for meds...but for supplements and "feel" good products. Really, it's for a new product. I was given a oral solution for Burning Tongue over a year ago. It's Orasoothe. While it heals the tongue, it is not anything I can take with me if I have a bout of burning tongue while out and about. I received a freebie from my dentist for Biotene Oral Balance gel. It's a product for the cavity, but its directions state apply to the tongue...then distribute around your oral area. Imagine my surprise when I discovered it soothed my tongue. THEN...I realized my palatal area was irritated after I started using the product. I definitely have a tube in my Sjogren's Emergency Bag I carry with me everywhere. This product makes my mouth feel as normal as our mouths once felt. Does not last for hours...but is wonderful while it's fresh in your mouth.
I love my Omega 3. I won't go into all the supplements I use...not any different than what most do. But the Omega 3 has made the dramatic difference of my eyes the ophthalmologist stated it would.
And the supplement/med I take which has helped me with chronic gut problems is my daily probiotic. I have eaten yogurt 3 to 7 times a week more years than most of you all have been alive. The probiotic has resulted (oh..three years) in zero gastric attacks. Let me say this: at about the same time I began taking it was when my tongue was beginning to be so bad. I modified my diet radically. I couldn't bear anything on my tongue. So I don't know what would happen if I could eat spicy foods as I once did. Just sayin'! I gave up almost all dairy...use soy milk now...about 5 years ago (for the stomach).
Find the eyedrops which work best for you. I have used Thera tears, Systane, Alcon Naturale Tears, and numerous others. The only eye product which gives me complete relief is Alrex which is prescription..and steroid. That is, I can use it if I have bad spell..otherwise I am directed to use no more than once a week. I keep it in my bag for emergency eye need. I hear about GenTeal eyedrops from many on the board.
Hope you find what you are asking about!
ccc