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Sjogren's Syndrome Support

Hydroxychloroquine?

Is anyone taking or know anything about Hydroxychloroquine?? I really don't want to take this or any medication for that matter. Having said that I have not seen this medication discussed as being used for Sjorgrens? Thank you for any information anyone might have.

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I am taking Hydroxychloroquine it is generic for Plaquenil. I have been on it for over a year and have had no problems. I take 200mg 2xs a day. Hope this helps.

Thank you for your response. Does this require you to get some kind of eye exam every 6 months because of possible side effects of the medication?

susieq said:

I am taking Hydroxychloroquine it is generic for Plaquenil. I have been on it for over a year and have had no problems. I take 200mg 2xs a day. Hope this helps.

I am taking it too, it works well for me. I do have to get my eyes checked twice a year, but so far it’s working well. I also have to have books work done every three months for liver function

Thank you for your response as well. So in both of your opinions what did it do for you and/or solve for you that you had going on before you started taking it, I am new here so I hope that question in not too personal or offensive. thank you.



Tokio said:

Thank you for your response as well. So in both of your opinions what did it do for you and/or solve for you that you had going on before you started taking it, I am new here so I hope that question in not too personal or offensive. thank you.

Yes I have to get eye exam, but so far it is once a year. I have noticed some blurring but I don't think that is from the med.

Since taking the "Plaquenil" the aches and pains throughout my body seem to be much less. But it could also the pain meds I am on "Tramadol". The dryness is the same. I am still tired and fall asleep at a moments notice. The brain fog hasn't changed. So that is not much help, the main thing the Plaquenil is supposed to do,( as I understand, feel free to let me know if you know more) it's trying to stop the progression of the disease. Slow it down at least that is what I understand.

My biggest problem was my organs. Everything felt inflamed. Like swollen or something. It felt like all my organs were going to explode. I don’t know why but the hydrochloroquine made that better, I still get it sometimes but not nearly as often or as bad. Now I just kinda feel like my organs are bloated, and that’s only sometimes.

I've been on Plaquenil for just over a year. It takes a few months to build up in the body fully but once it does it helps with the fatigue and pain. In my case, the fatigue was debilitating. Its a huge relief on that level. It isn't fully gone but I am worlds away from where I was. As far as the pain, my flair ups are farther apart and last a shorter amount of time. The daily regular pain is still something to deal with though.

As for the eyes, yes you have to get checked regularly. Thankfully the incident rate is low for issues but the key is to catch it early, which is why you should go every 6 months.

I was on 200 mgs twice a day until about 2 months ago. Now its just once a day. It also bears mentioning that for the first couple weeks it upset my stomach pretty bad but that went away. I'm glad I stuck with it. I do hope it works for you.

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Oh yes! I had stomach problems too for the first couple of weeks

Thank you to everyone for your help and responses!! This is all still quite new to me and I am still not sure what I will do or if I trust the diagnosis. I know I sound like I am in denial, but my breathing seems to be the real issue for me and my Rheumatologist does not seem to think that it is an issue and yet I can't seem to breath well. So now my primary is sending me to a pulmonary doctor so it just seems to be never ending. No doctor seems to look at everything and the whole big picture. Frustrating to say the least! Thanks for letting me vent as I feel like no one else I know understands a word I am saying! :-)

Wow, that is a lot of great information. Thank you for taking the time to put it all down for me. I am still researching SS and the medications that go with it. I told my Rheumatologist that I did not want to start anything yet until I could talk to my Pulmonologist because my breathing is what is my worse issue at this time for me. So now I am wondering if it could have anything to do with SS my Rhuemy didn't mention it when I said I had breathing issues? I seem to get more confused each day and wish ONE doctor could dicuss ALL my issues with me instead of going to 3 different ones. Anyway you information was very helpful to me and I thank you so much for your time. Take care of yourself and I hope you feel better. :-)

David Stone said:

Hello Tokio,

I took generic plaquenil for about 7 years, first at 400 mg/day, then during the last three years at 200 mg/day. I am having eye pain and eye problems recently, which are probably not from the plaquenil, but who knows and it is best to be cautious anytime you have eye after you have been on it for five years or so - so I stopped taking it now for good.

I think I have recently been reading from multiple, but not all or even the majority, of sources of information that you should go off plaquenil when you have had a cumulative dose of 1,000 grams, which I figure I am near or at now.

Plaquenil did absolutely nothing to give me any energy, and it also did little to help with my massive systemic pain. One time I quit it and I got a really deep, very disturbing and painful ache in my right hip that I had not had since I had gone on plaquenil years before that, so I resumed taking it.

Rheumatologists love to prescribe plaquenil for people who have either Sjogren's, or Lupus. It is apparently kind of a wonder-drug for Lupus, in that it actually prevents flares in the majority, or a large percentage, of people. It doesn't do that for Sjogren's, but they don't know what it does do, so they like to give it to you and see what you say. I have no doubt at all that it gives a lot of people with Sjogren's more energy and also can reduce pain - it just didn't do much for me.

Because Plaquenil has so few side effects, and is considered to be almost benign aside from what are truly ultra-rare, but potentially causing permanent blindness, eye problems, I thought plaquenil was kind of no big deal one way or the other to me. I have now learned more, or just paid more attention, and the potential eye problems, now that I am having eye pain and eye problems, are troubling me.

Yes, they made me get eye exams twice a year, and not just an opthamologist looking for optic neuritis on the optic nerve with a little light. You are also supposed to have "field of vision" tests, as loss of your peripheral vision is frequently the first indication that plaquenil is damaging your eyes - again, eye damage from plaquenil is incredibly rare.

It is very likely that no one who reads the posts on this website even ever heard of anyone getting eye damage from plaquenil at the doses taken for auto-immune illness.

People who got more eye damage usually took huge doses of plaquenil and chloroquine for malaria in the late 1800's to present. Damage is almost unheard of in Sjogren's or Lupus dose levels.

I am probably having eye problems because I have Primary Sjogren's, with Secondary Central Nervous System (CNS) Vasculitis, and inflammatory things like intense peripheral neuropathy in my lower legs and feet (and I am only in my 50's - not old yet lol HA!).

Therefore, with all my other nerves getting inflamed and damaged, it is much more likely that my somewhat-rare version of CNS Sjogren's will actually attack things like my optic nerves, or other liquid eye structures and tissues, that are not always attacked in ordinary Sjogren's.

It is certain that a lot of my tissues are progressively getting fibrosis, such as the left side of my heart (from Heart-ultrasound test), salivary glands (from lip biopsy), indicated as starting in my lungs (from CT scans), and my brain from vasculitis (seen with MRIs), etc etc.

So, I would recommend that anyone with Sjogren's just take plaquenil if their Rheumatologist suggests it. It usually, but not always, has few side effects, and sometimes can produce a lot of benefit. It is usually administered without that 1,000 gram lifetime cumulitive dose that I mentioned. That lifetime plaquenil dose of 1,000 grams is yet another Sjogren's-related controversy.

Plaquenil usually takes about 6 months to start working, and keeps working for many months after you stop taking it. This can cause ongoing eye damage, potentially for years, if you do get eye damage, after you stop taking plaquenil.

I hope this helps. Plaquenil is kind of like the "standard" first-treatment used by many Rheumatologists, for both Sjogren's and Lupus, along with various eye and mouth wetting agents. It is fortunate that this medicine exists for us, even though no one knows exactly what is does in the body, how it works, or really even what to expect, if anything, when Rheumatology patients take it.

Plaquenil is one of the many mysterious "black-box" medicines people with Sjogren's take - we know it can and often does work to ameliorate the symptoms of Sjogren's, but don't know how it works.

I take hydroxy chloroquine. It can be hard on your stomach and you may have to find a manufacturer that makes one you can tolerate but has kept my blood levels steady.

Ive beem on Hydroxychloroquine for almost two years now and have had no side effects. It seems to have helped with the pain in my body. I still have the dry eyes and all that, but thats easily handled with drops. It took about three months before I felt better. I get my eyes checked once a year.

I have been taking Hydroxychloroquine since 1990 and haven't had any problems with it. You just need to get an eye

exam once a year where they check your visual field and dilate you eyes to check for build up of medication in your eyes.

Just saw a rheumy at Mayo Clinic in AZ.. She said that Plaquenil can be helpful if you are having a lot of inflammation which I do. I think many who have Sjogren's have a great deal inflammation. It has helped me.

I was just taken off of it, as I was having tremors (not something mentioned frequently). It helped the tremors to be off.

Thank you to all of you for your thoughtful insight and information.
I appreciate it! :-)

I took it for 4-5 years, then went to Methotrexate until high liver enzymes changed all of that.
Started having so much pain, and still do, my rheumatologist said the Plaquenil would help with pain, but could take 6 months to start helping…still waiting.
You must have your eyes checked every 6 months if taking!

Thank you for your input. I appreciate it. Let me know if it starts to help with the pain. Hope you feel better soon.