I have been having the same chronic health issues for years & was finally diagnosed with Sjogren's Syndrome 2 1/2 months ago & RA 7 weeks ago. I'm now on the "standard" med, Plaquenil 200mg. & Restasis twice daily. Plaquenil is causing much more pain, coordination issues & dizziness. My eyes are still swollen & red, horrible burning almost all day even after using lubricating eyes drops. Does anyone else have intolerable side-effects from these 2 medications ? Don't know if I can continue with these 2, but does someone know anything better than Plaquenil to control pain ? Know I haven't been using both very long, but was already in terrible pain & now it's so much worse. I'm so compassionate for other sufferers as others tend to look at me & say "You look just fine to me." I'm hating lying around the house all day, being bored & lonely, but this is getting worse so what's the alternative?
Hi mimi! Plaquenil is a disease modifying drug, and takes time to work. I'm wondering if you're experiencing is an uptick in symptoms and not side effects at all. It can take up to 6 months to start noticing positive changes, and it won't do anything to control pain. Over time it will minimize inflammation. Why not talk to your doctor about concerns, as well as asking if an anti-inflammatory might be appropriate to help you until the plaquenil is working.
Restasis. . . . Yeah, it can be stingy. You said that you're using lubricating eye drops. That may be the issue. I have found that all lubricating drops wind up irritating my eyes, even the preservative free ones. So I cope in different ways. First off, I use a night time gel, not gel drop, every night. It means that I wake up and start the day reasonable well. When things are rough, I also do a warm compress at least once a day, as well as an eye scrub in the shower every day. Every day. Why? It helps to improve what tears you have by making sure that the oil glands are more open and making your tears better.
Try the eye treatments for a few days and hopefully you'll start to see some improvements. Do talk to your doctor as well. S/he should be willing to talk to you or at least talk through the nurse to help guide you. You're in a tough spot right now, as you're waiting for meds to really start to work.
Yes, the warm compress makes a lot of difference- you can use them twice a day to start with, then down to once. I thought it was just for blepharitis but my opticians told me that it will help anyone with dry eyes. You can get microwaveable eye compresses on Amazon.
Stoney & Jules, Thanks for your caring input on Plaquenil & Restasis. Will try the compresses on eyes, but giving Plaquenil a rest for a few days to see if it's an uptick in Sjogren's or side effect. Will do research to see if there's another disease modifying drug that agrees with me better. My reumatalogist is Vietnamese & I can barely understand her & think I need to switch doctors. I'm having to push my way around to get diagnoses by making my own opthamologist appt. for diagnosis of Sjogren's & handing paper work to reum. Dr. & she just glanced at it like she wasn't interested. It's hard to find Drs. you trust & I don't think most can put RA & Sjogren's together for treatment. Know I don't make much sense but it's the pain & brain fog. Thanks & love to both of you! Forgot to tell you, Stoney that I am highly allergic to anti-inflammatories as they cause severe colitis, so I'm at a loss to reduce swelling. This disease is the pits & know you both agree!
I was just diagnosed last week and my rheumatologist said there was nothing he could do for me - but I had read about Plaquenil on-line. I'm already on Meloxicam (anti-inflammatory) for arthritis in my back and hips, and recently started taking Gabapentin for nerve pain, because of a bulging disc in my back. Maybe the rheumatologist thought I was already taking enough for symptoms! He said to follow-up with ophthalmologist and dentist for dryness issues, and primary care doctor for any other issues - he didn't seem very caring or interested! I have been seeing a chiropractor for three years and she has me on a gillion supplements and this coming week we will have a discussion about homeopathic remedies, as well as diet and supplements.
Anyway, all that to ask you if you've tried Meloxicam or Gabapentin for symptoms. I also take Tylenol with that, and still am having pain, but maybe those would help you? Sorry you feel so crappy - I understand!
mimi said:
Stoney & Jules, Thanks for your caring input on Plaquenil & Restasis. Will try the compresses on eyes, but giving Plaquenil a rest for a few days to see if it's an uptick in Sjogren's or side effect. Will do research to see if there's another disease modifying drug that agrees with me better. My reumatalogist is Vietnamese & I can barely understand her & think I need to switch doctors. I'm having to push my way around to get diagnoses by making my own opthamologist appt. for diagnosis of Sjogren's & handing paper work to reum. Dr. & she just glanced at it like she wasn't interested. It's hard to find Drs. you trust & I don't think most can put RA & Sjogren's together for treatment. Know I don't make much sense but it's the pain & brain fog. Thanks & love to both of you! Forgot to tell you, Stoney that I am highly allergic to anti-inflammatories as they cause severe colitis, so I'm at a loss to reduce swelling. This disease is the pits & know you both agree!
Mimi- I highly recommend not stopping taking any medicines without talking to your doctor. I doubt that you would notice any difference anyway but stopping or changing meds should never be done on your own.
mimi said:
Stoney & Jules, Thanks for your caring input on Plaquenil & Restasis. Will try the compresses on eyes, but giving Plaquenil a rest for a few days to see if it’s an uptick in Sjogren’s or side effect. Will do research to see if there’s another disease modifying drug that agrees with me better. My reumatalogist is Vietnamese & I can barely understand her & think I need to switch doctors. I’m having to push my way around to get diagnoses by making my own opthamologist appt. for diagnosis of Sjogren’s & handing paper work to reum. Dr. & she just glanced at it like she wasn’t interested. It’s hard to find Drs. you trust & I don’t think most can put RA & Sjogren’s together for treatment. Know I don’t make much sense but it’s the pain & brain fog. Thanks & love to both of you! Forgot to tell you, Stoney that I am highly allergic to anti-inflammatories as they cause severe colitis, so I’m at a loss to reduce swelling. This disease is the pits & know you both agree!