flare up with sjogrens../trying plaquenil

[jenny2008]

ok.. i just needed somewhere to post this -to people who understand.. i was prescribed plaquenil about a month ago-tried it-took the full dose (too much at once ) and got sick.. so now after having a horrible sjogren's dry eye flare up today-my eyes feel like they could pop out -so dry- i hvae decided to try plaquenil tonight when i go to bed.... my rheumotologist advised me to take 1/4 of the dose and see if i can tolerate it.. according to her several of her patients with dry eye and mouth benefit from it....here we go.

[calli66]

Plaquenil Post

Hi jenny

Sorry you're having a big flare! I took Plaquenil for 2.5 years and quit this past February. And yeah, it's best to start with very small doses and work your way up.

It's a long-term thing---usually takes 4-5 months to start to moderate your immune system. So you probably won't notice it helping symptoms in the moment but you can look forward (hopefully) to fewer flares if you can stay on it for awhile.

What to expect in the beginning of Plaquenil? It varies, I guess, but for me, I had a small amount of dizziness, a little ringing of the ear, both of which went away after a few days.

One side effect can be very VIVID dreaming, so don't be surprised if you have a big screen, 3-D type extravaganza personal movie when you sleep! My eye doctor worked for awhile in Africa, and he and his colleagues took Plaquenil doses every Sunday night (it's a malaria preventative). He said everybody came to work the next day talking about all their wild dreams.

Another side effect is some nausea or gastrointestinal distress, usually of the loose variety, but people say this goes away as you adjust to the medication. I found that is helps to eat lightly and fairly bland until you know how your belly will respond.

Some people do have allergic reactions, so by all means, read the package insert information and watch out for hives, rash, etc.---means you should quit taking and see the doctor.

Don't be scared to take it; it really seems to help with the Sjogren's---although not so directly on the dry eyes and mouth---which is what we all wish it would do immediately.

Calli

[jenny2008]

hey there. thanks so much for your post and advise..i really appreciate it...
may i ask why you stopped taking it after 2.5 years?
i know there is only a slight chance it could my eyes.. of course i am leary and scared to take it again.. the first time i tried it i took 2 pills at once-200 mg.. horrible body aches and tiredness for 2 days.. dont recall my dreams being odd but i take melatonin every night so i tend to get vivid dreams anyway.. sometimes they are great and fun and sometimes downright frightening!!!

you can PM me re: your experiences as well.

again. thank you.. it helps having this board as an outlet.. whenever i have true 'flares' it makes me realize i shouldnt complain on my 'normal' days..

[calli66]

I sent you a PM.

C

[lamarr]

hey there. thanks so much for your post and advise..i really appreciate it...
may i ask why you stopped taking it after 2.5 years?
i know there is only a slight chance it could my eyes.. of course i am leary and scared to take it again.. the first time i tried it i took 2 pills at once-200 mg.. horrible body aches and tiredness for 2 days.. dont recall my dreams being odd but i take melatonin every night so i tend to get vivid dreams anyway.. sometimes they are great and fun and sometimes downright frightening!!!

you can PM me re: your experiences as well.

again. thank you.. it helps having this board as an outlet.. whenever i have true 'flares' it makes me realize i shouldnt complain on my 'normal' days..

You Shouldn't be taking Melatonin if you suspect you have an auto immune dissorder!

[faithfully]

Jenny, I also have Sjogrens and extremely dry eyes. I had tried Plaquenil for six mos and it didnt help me at all.
I too was wondering why Calli quit taking it?
If you find it does help you please post for those of us who are looking for relief.
THanks

[jenny2008]

i will let everyone know. i have only been taking plaquenil for about 3 months or so..
as far as melatonin it looks like there are mixed reports. my doc said it was ok for me to take?

[calli66]

Jenny, I also have Sjogrens and extremely dry eyes. I had tried Plaquenil for six mos and it didnt help me at all.
I too was wondering why Calli quit taking it?
If you find it does help you please post for those of us who are looking for relief.
THanks

I quit because I had vivid (and bad) nightmares almost every night. I just couldn't deal with the mental fallout from that; couldn't shake off the feelings and images.

In retrospect, it did tame down my immune system. After I quit, my thyroid levels started going up and down (Hashimoto's). They were stable all the time I was on Plaquenil, but now they're not.

C

[faithfully]

Thanks Callli for letting us know why you quit Plaquenil.
Sjogrens is the most miserable disease.
For me, Plaquenil caused other problems and yet didnt help with the ones I had.
Faithfully

[jenny2008]

i go to my Rheumy the end of this month.. i am assuming she will prob do blood work... at that point in time i will have been on 400mg plaquenil for 4 months.. i will give it a year as long as i dont get side effects .. i will give it longer if it is helping my levels tho i guess.. i cant tell if it is helping with my eyes as my blepharitis decided to take its turn to fight me!!! so now i am trying a strict anti inflammatory diet.. i will give that 3-6 months.. if i can make it that long..yikes.

[faithfully]

Jenny, I tried going wheat free and didnt notice a difference. My flares always come with my monthly cycles though now they are coming every 21 days. Doctors tried putting me on the pill to prevent the cycles but that didnt work either.
Sounds crazy but I am praying that when I dont have periods any more that I wont go into flares.
For some odd reason I have a day right before my period that my eyes dont burn. Every day they are so dry and burn except that day. I dont know what is happening to bring much needed relief? Even typing this I can barely keep my burning eyes open. I just put in Azasite after my warm compresses, then I do REstasis then I do the night time oinment then I put on the Tranquile Eye goggles that I got from here. Even with all of this all through the night my eyes are rock hard dry. I also run a humidifier.
How long have you had Sjogrens?

[jenny2008]

almost 4 years-i am going to pm you..:0

[y-gwair]

I started with plaquenil just over a year ago (starting on 400mg a day). I found it improved my oral dryness very rapidly (as well as oral mucosal inflammation, which had been unbearable), and helped a lot with fibromyalgic pain after about 2-3 months (after which I stepped it down to 200mg a day, as recommended by the rheumatologist).

I'm not sure how much it did for my dry eyes, though they flared up badly after I stopped taking it for about 6 weeks last summer (I stopped when I had a really severe, prolonged bout of probable swine flu and the fibro/eye inflammation started to up really badly within about a month). It does irritate the stomach quite a bit to begin with, but by the time I stepped it down to 200mg it wasn't too bad, certainly better than trying to cope with all the other symptoms, so I'd recommend giving it a go. Retinal side-effects of plaquenil tend to be associated with very long-term use at higher dosages, one of the reasons why rheumatologists suggest a maintenance dose of 200 mg a day once symptoms are controlled (eventually 200mg every other day).

[y-gwair]

In retrospect, it did tame down my immune system. After I quit, my thyroid levels started going up and down (Hashimoto's). They were stable all the time I was on Plaquenil, but now they're not.

Do you mean thyroid antibody levels were fluctuating, or thyroid hormone levels (fT3 fT4 TSH)? Are you taking any thyroid replacement hormones? I'm not sure plaquenil on it's own would help much with autoimmune thyroiditis (though it can help damp down hypergammaglobulinemia, which can underlie both Sjogren's and Hashimoto's thyroiditis). Untreated thyroiditis can result in quite a lot of unpleasant emotional symptoms, racing thoughts, anxiety etc. I know, I got put on anti-depressants before I eventually got a diagnosis for the thyroiditis. One of the worst symptoms of untreated thyroiditis can be eye irritation, swelling etc; anti-thyroid antibodies have a high affinity for various eye tissues, causing puffiness, inflammation and lacrimal gland dysfunction, and this will improve upon adequate thyroid hormone medication.

[jenny2008]

Are you back on the plaquenil?? thanks for responding!`