Talk to me about Plaquenil, please!

As predicted, today when I saw my Rheumatologist, he said that I could not be on Enbrel or any other biologic, that it lowers my immune system too much.

He is sending me to an eye specialist for the okay to start Plaquenil, after I get rid of the third UTI this year. Sending me to my GP, wants culture sent to lab. Big problem is that I cannot take the meds in the Levaquin/Cipro family because of Achilles Tendon rupture in both legs! What an ordeal) I know Plaquenil is used extensively with Lupus patients, but tell me how much it helps with Sjogren's.

My Rheumatologist was very surprised when I told him that when my GP took me off Enbrel, that the arthritis issues did not worsten as much as I had expected, BUT the Sjogren's really went through the roof!

Any personal experience with this DMARD is appreciated.

Wishing you all well,


I don't have any problem with it. About 5 years ago, I did take a generic that seemed to make me nauseous, but now it's not a problem. I can't say that it helps a lot though.

I stuck with it for a week but by then my whole throat felt burnt from reflux and it felt like it had burnt a hole in my stomach. Don’t let that put you off, I am unable to tolerate practically all meds since the sjogrens and would like to have been ok taking it. I hope it helps you x

I have been on and off plaquenel. …no help…I have also been on many biologics…no help…sjogrens has chilled out since I have gotten most of my teeth out…I dont eat dairy…drink soda…and try to eat greens everyday…find drs. That listen and really help you…thyroid problems also make it all worse…get that straight…good luck

Um, doesn't sound too good to me! I have trouble with many meds for this reason, though I always have Phenergan on hand, it surely makes you sleepy, and I'm just starting to have a little energy again. The Enbrel had me so wiped out I was going from the bed to the couch and back!

I'm willing to give it a try, plus it will get me to the eye specialist! This shall end the procrastination! You know, it's just one more Dr appt! Seems like it's all I do and the only place I go, especially in winter!

Geez, did that sound like a 'whine' or what? ha!

Thanks for helping me out, ladies!

I have the opposite problem with Plaquenil, as it keeps me awake. I've been taking it for about 3 weeks and haven't sleep at all since I started taking it. So far, it hasn't seem to help the Sjogrens at all. I'm a bit disappointed. I need something to help me!

I don't know why, but my pain has increased to an insane amount. Even my pain meds aren't really working that well, not take the pain away, and/or more pain is going on. I'm thinking of stopping the Plaquenil, to see if my pain goes down a few notches.

Hi, I take Plaqenil have been for about seven months. I do not see a dramatic difference while i'm taking it but when i go off of it i do seem to feel more symptomatic. I'm not sure if it is wishful thinking on my part or it really does help. I take other pain meds also so I'm not real sure of the effects of the plaquenil without them. . I have not had any changes in my sleep pattern when i take it. I too was dissapointed in the lack of difference I had in my symptoms. What exactly does the plaquenil do to your eyes that they need to be moniterd? I also had a tendon problem in both knees and elbows 3 days after taking avelox. I was admitted to the hospital with a severe reaction I did not have a clue that an antibiotic could cause this kind of damage I was blown away. I heard "don't quote me" that avelox is the cause of tendon rupture quite often and I don't know why there is not a specific warning about this.


Is it wide spread body pain, or one particular area? Injury, arhritis, fibro, or just Sjogren's?

Same group of antibiotics, sadiemay!

The pain is wide spread. I do have arthritis and fibro, but I’ve never been in this much pain, this long.

You have my empathy on the arthritis, there isn't a good kind of it either! I see some x-rays in your future!

Hello everyone,

Only thing I have found that even helps a little with the pain for what is either my fibro, sjogrens, or maybe both. Is lorazepam with naproxen. At least I am able to get some relief on very bad days. My question to you all is, my anxiety, and depression seems to be through the roof right now. Think I had a break-down for sure, but my husband is calling it frustration. I was bawling my head off uncontrollably, and honestly thought I was losing my mind! He still, to this day, does not get it. Can anyone relate please? Spmetimes I just want him to hold me, and understand. Doesn't happen. So sad.

Hi SK,

Sorry things have been so tough. I've been on Plaquenil for 2 years and I love it. The dryness in my mouth and eyes is much improved! The best part is I really haven't noticed any side effects, which is very rare for me. I do also take ginger root capsules so I don't get the reflux that others have mentioned. I have to go in every other month for blood work but it has always been spot on.

I have to admit though, that it really has not significantly helped the other SS symptoms, such as; neuropathic pain. I am going to try the biologics mainly because of my secondary RA which is destroying my finger joints. I think perhaps you should give the Plaquenil a try and see for yourself.

I wish you the best of luck and healthier days to come!

Take care,


Planquenil was the first protocol that my rheum tried. I was on it for 8 months and other than the addition of frequent visits to the eye doctor, there was no real change in my symptoms. I agreed with the Dr. that there was no benefit in continuing to take Planquenil. Good luck!

It seems that everyone is different. I would give Plaquenil a try. I did not have a very good Rheumy, and he just started me out full dose. I did have trouble initially, but stuck it out and am doing fine on it. I think I get quite a bit of relief of the arthralgias, and maybe a tiny bit of help with the dry eyes and mouth. I am taking the generic without trouble. My suggestion is to work up to the full dose. I also take mine at night.

I have been on plaquenil for a long time for my lupus. My doctor told me it was more of a matience drug to help prevent future problems i was of it for over a year and did start having more problems

The eye test is given after being on Plaquenil for awhile because it can affect visual fields in the eyes. I Plaquenil

Hi gma,

The frustration, depression and so many other negative feelings are a big part of life with chronic illness that has chronic pain. In the very beginning, long before any determination was made, except that something was definitely wrong, I fell apart in my Chiro's office, he sent me to a PhD psychologist who has a practice which promotes resiliency. I talked with her for about 2 years and it did me nothing but good.

I hope this is of help to you. I do 'get it'!

Wishing you well,


I was on Enbrel for 3 years and it work just fine for me. I had to change Rheumatologist and this doctor took me off Enbrel because he didn't like his patients using that particular med. About a 1 1/2 I started having problems and they did all kinds of test and nothing showed up. One doctor kept saying I think you have Lupus but the test is not showing it, but you have all the syptoms. After being in the hospital with my platelet count dropped down to 25 I had another Rheumatologist come in and did some extensive blood work and found that I had Lupus and Sjogren with Sjogren being the high high high one. So after going through all of that I'm now back on Enbrel and it is wonderful thank you Jesus! My thinking was when I was on Enbrel it helped my immune system and when that doctor took me off that's when I started having trouble not sure if that was the real reason or not but it seem like it to me..............Good luck!