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What medicines work the best for you?

Started by cmclien, January 22, 2015, 07:24:48 AM

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cmclien

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?
Cindi

Age 55-Sjogrens, Hashimotos, IC/PBS/ sometimes,  GERD, IBS, TMJ, Vasomotor Rhinitis, Anxiety, Migraines/Chronic Headaches.  Also had Meniere's as a teenager that went away years later.

Synthroid, Restasis, Omeprazole, Lexapro, Propranolol, Nasonex, Magnesium, Multi, Vit-D, Premarin, Aloe

Joe S.

Acetyl-L-carnitine, R-lipoic acid,  omega 3
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

SjoDry

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

finallyadx

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.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Gingersnap

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.
37/F Dx sjs with lupus overlap, raynauds
Plaquenil,prednisone, gabapentin, cymbalta, zanaflex, evoxac, lidoderm patch, restasis

cccourt1942

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
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene