Hi Everyone. My apologies if you have answered this a thousand times, but there is so much information on here that I finally decided to just ask. I've been on the RA board for a while, a little on the allergy board, but now I have a new question.
I was diagnosed with SS four years ago, and it was kind of said like "Oh, in addition to your RA (which is severe and aggressive of course - couldn't be just starting or something), you also have Sjogrens Syndrome too. Here take this pill three times a day. It will help." And that was my total introduction to SS as she gave me a script for Pilocarpine HCL The problem with the Pilocarpine is that it raises blood pressure and mine (which usually runs about 120 / 70) has gotten pretty high with even one, let alone 3 a day. Now after two years of treatment, my eyes are starting to get red and burn a lot. My skin is getting crepey and dry...
What medications are you all on just pertinent to the SS? Thanks for your patience..
Hi , i was diagnosed with primary sjogrens over a year ago. I was started on plaquenil initially which did help with some of the joint pain and dryness, i then started gradually on lyrica for the muscle pain which helped alot . I still had enlarged lymph nodes , joint pain and exhaustion so i had 1st rituximab infusion in April and second in January . This has started to make a big difference, i have more energy, less pain and the lymph swelling has improved. I have tolerated these treatments quite well so far. The skin and eye dryness I control with lots of moisturiser and eye drops, i also user a saline spray for my nose . I hope you can things under control soon 💐
I was diagnosed with lupus (SLE) with secondary Sjogrens 2.5 years ago. I take Plaquenil (hydroxychloroquine), 300mg/day, split dose which tamps down my overall inflammation which means, little-to-no joint pain. I still experience fatigue at times. Not sure it does much for my dry eyes/mouth.
I recently started on Xiidra 5% drops for my dry eyes, as Restasis did nothing and the OTC drops/gels weren't doing much on their own. It got to the point that I felt like I was walking around looking like a drug addict as my eyes were so red and irritated all the time. I would get the worst headaches as well.
The Xiidra drops have really been helping. I still use preservative free OTC drops and a gel at night, but find I don't have to use them constantly. I wear contact lenses, which I know aggravates things, but I hate glasses so contacts it is. Xiidra has been life-changing.
I see you are in the US (as am I). If you go to the Xiidra website, you can fill out a form to try Xiidra for free the first month, and then discounted for the next 11 months. I'm able to make a vial last for three applications instead of just one, which greatly extends the usage. In addition, my ophthalmologist got my insurance company to cover the medication and I get the Xiidra discount on top of that. Such a relief for me as it is quite expensive otherwise.
Another thing to consider is that the meibomian glands (they lubricate your eyes) could be clogged. You can use a warm compress on your eyes to warm up the buildup in the glands so that you can then gently massage your lids along the upper lash line to release the oils.
Hi Milkwoman - Thank you so much. I will talk to my doc about the drops. They sound like just what I need, and I'll try the massage as well. Thank you again!
I am just getting to the same point - red irritated eyes all of the time... Have a great weekend!
If the hot compresses work for you, you can then look into the MGD Bag - it's a microwaveable compress that works better than a hot washcloth. I also use Retaine MGD Complete Dry Eye Relief drops. My other favorite drops are Systane Ultra High Performace preservative free drops.
There are soooooo many kinds out there... Trick is to find the ones that work best for you.
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Excessive Sweating/Hyperhidrosis
Tingling
Sjogren's symptoms