Hi All,
Can anyone tell me if there is any medication that can help with Lupus? I’m taking Hydroxychloroquine, + several pain killers. The Sjogrens is causing a lot of problems with my eyes, now Lupus is showing it’s ugly head. It would be nice if anyone has any help they can offer.
I don’t know Hydroxy but people on here have commented in the past on how it can affect the retinas when it’s taken in a higher dose. I also thought Hydroxy was given to treat Lupus? I’m sure someone will come by and answer you soon but re Lupus, have you looked at the Lupus U.K. (I’m presuming you are in the U.K.) Group on Health Unlocked?
lots of problems with my eyes my GP gave me a selection of eye drops and finally found two that are good for me. Key thing is make sure you put them in before bed as well as during the day. Bad days can do 6 times minimum.
I have a growing list of autoimmune but not Lupus so can’t help there.
hydroxy is for Lupus as I’ve been taking it for 20 years for that. Thankfully mine doesn’t raise its head so I’ve never had the need for anything else. Do need regular eye tests with it as it can effect your peripheral vision.
I’ve been on hydroxy for many years now, I also have cataracts in both eyes, my optician said it was prob caused by all the steroids I’ve been on over the years. Im under an ophthalmologist at my hospital but that took many years of complaining about my eyes to my Rheumy. I have blepharitis in my eyes and also they were very very dry. I eventually had the punctual plugs put in which were instantly a winner for me after he did the Schirmer test which showed very severe dry eyes. I do still put zailin night gel in at night and now get checked every six months at the hospital. He is keepin a watch on my cataracts as well. My optician does the check as well as I’m on hydroxy but he said it is rare for the hydroxy to affect them. But I’m glad I’m getting checked. I was diagnosed with skin lupus last year and the dermotologist said it would have been worse if I wasn’t already on hydroxy. I was diagnosed with MCTD and also have lymphoma which could have been related to these autoimmune problems. It’s a case of keep complaining and keep pushing to get the right tests, and it’s going to be a lot worse in these times. Best wishes
All these different diseases and conditions are just collections of symptoms that people have given a name to over the years, many long before there was any understanding of what was causing the disease.
People are giving several diagnoses of different autoimmune diseases without anyone actually looking at what the underlying cause of that is. In fact they happily tell us if we have one, we are likely to get more.
We probably only have one disease, it is just that it can affect different parts of the body at different times in there can be differences between people too.
So if the underlying condition is a particular type of autoimmune disease, then it is possible that a drug that treats one set of symptoms will also effect another set of symptoms.
I hope you can find a combination that works for you. I have the dry eye thing too, and I sometimes forget to put the drops in, and then wonder why cleaning my reading glasses isn't working. Such a relieve to be able to see clearly again when the drops go in!
if you are takimg a lot of painkillers as well as hydroxy then can you push to get reviewed? Something is off kilter there. You need to know what is causing the pain.
I have RA, and Sjorgens, and my recent ANA suggested that my autoimmune disease could be evolving. I’m on Roactemra and Methotrexate, but also take painkillers daily. However this for my arthritis - so no other choice right now.
I think hydroxychloroquine is one of the treatments for lupus or it’s what s9me9ne I used to work with took. Sjorgens you’ll need lots of preservative free eye drops, used constantly throughout the day - not just morning and night. You can also get a ‘gunky’ one for night time.
You could also try a heat bag - you microwave it then rest with it over your eyes. I also use a hot wet flannel but you’ve got to keep wetting it. When my eyes feel particularly bad I’ll use Blephawipes to clean them.
I’ve been taking Omega 3 algae oil capsules for a long time and I discovered when I ran out and didn’t rush to buy more that using these makes a huge difference to the dryness of my eyes but I’ve been using them for a very long time so the results are probably not instant.
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It might be worth trying to get referred to an eye specialist if your Sjorgens is very bad though.
Hi thereSorry to hear you are having these problems. As others have said, Hydroxychloroquine is a drug that is used for Lupus. Is that not why you were first prescribed it? I have RA, but secondary sjogrens and Discoid Lupus too. The Hydroxychloroquine was prescribed to try and help the discoid Lupus. I was already on a biologic, steroids and 2 other DMARDs for the RA. Cataracts shouldn't be anything to do with the Hydroxychloroquine either. As has already been said, if anything, they can cause retinal problems and that is very unusual. I've lost the sight in one eye due to complications of severe dry eyes, and I was still allowed to take Hydroxychloroquine. I'd also had a cataract done in my now blind eye which was caused by steroid use and eye trauma caused by several surgeries.
As fruit and nut case (and others have said), you need to find a good preservative free artifical tear drop that suits you, and use an ointment or gel overnight. Use the drops as much as necessary (I have to use mine every 15 minutes approx). Failing that, have you been referred to an Opthalmologist? There are other things that can be done to help with dry eyes - punctual plugs (which work for some), and other different kinds of drops that are on prescription (Ikervis, Ilube, etc). Some specialist eye hospitals/units (Moorfields for instance), even run what they call External Disease clinics in which the Consultants are very experienced in the kinds of eye problems caused by RA, dry eye, Sjogrens and many other diseases. They have been brilliant for me. Don't know if it would be worth starting with an optician visit? I'm not sure if they can say whether you would warrant an opthalmology referral? Best of luck. 🤞
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