my eyes and mouth have been getting so much drier the past week.. I have been on 100mg -200 mg the past 3 weeks (200 for about 1 week).. My eyes are in a major flare.. my mouth is considerably drier ... has anyone else had this? could be it the plaquenil or is my dose still too low for this to happen? can it actually make you worse before you feel better??? i know if i call my rheumy she will just tell me to decrease or stop taking it and see what happens... i just wanted to see if it happened to anyone of you ??thanks!!!
While I've not noticed any marked improvement on Plaquenil, I definitely have not gotten worse since I started it. I'm on 200 mg a day.
Are you also on anything like restatis for your eyes or salagen for your mouth? Those two make it bearable for me.
I was at 3 1/2 on the plaquenil when I got flu-like symptoms and my rheumy told me to stop taking it for a week. After I feel better I'm supposed to try it again to see if the medication was the culprit or if I just had a bug.
But before I got sick, I had not noticed any additional dryness. As a matter of fact, I think it was perhaps helping a tiny bit with my mouth.
I hope you get relief soon. A body gets sick and tired of being sick and tired!
Deb
Plaquenil does not work that fast for one thing. And you are on a minor dose. The standard dose of 400mg is set for the average American (140 pounds +/-). Technically it is weight based but it is most commonly perscribed as 400 mg for the normal sized human for convenience no doubt. Unless you are REALLY teeny you aren't near a normal therapeutic dose.
You are sick. You can expect to feel lousy for awhile. The drug usually doesn't kick in for months because it is given at such a low dose (and that is at the 400 level.)
If you are unsure I would google the drug and check out on WebMD or somewhere the normal side effects and see if they match.
thanks everyone.. i appreciate it. i am only up to 200mg..i guess i am just having a major flare..
yes i take a compouned cyclosporine.. .2% ( basically higher dose of restasis) i started on restasis over 3
years ago and then wanted the higher does--i don't think it has done anything more than restasis did..
i also take evoxac and fish oil.. i guess i am having a flare!@!! thanks for the responses...
Hi I'm brand new here and it's amazing how everyone has the same problems. I was diagnosed with SSB in June 2010. When the dr told me I had something I was overjoyed that finally a diagnosis was made and that someone was going to help me. I've been on 200 mg of Placquenil since June. The first 3 weeks I started feeling better and since then it's been down hill. Although I was recently diagnosed I believe I have been suffering with this for 25 years. I ve been to other Rheumo's and no one every did the blood work for this. My body hurts all the time. I can't get to sleep at nite and I can't wake up in the morning. My neuro has me on Neurontin. He prescribed 3 a day but my Rheumo said that would knock me out so I only take one at nite every other nite. When I was taking one every nite I started to get depressed and anxious but the rheumo said this wouldnt do that. Of course I have a lot of stress in my life but hey who doesn't in these hard times yet no one I know is suffering with this from stress. I also have stomach problems - had diverticulitis a few weeks ago and another uti. I couldn't take the meds for that they were making sick. How long does it take for the Placquenil to kick in.
It took a good 9 months for me, and over a year before I really felt good...
I have been reading allot of posts regarding plaquenil and was wondering if everyone with SS takes plaquenil?
I'm not taking any drugs but I'm starting to think that maybe I should........ What differences do you feel when taking plaquenil? I have read so many
negative things about it ( stomach upset, problems with eyes, etc)
So please let me know how it has helped you?
Maria :)
Hi Maria :)
Welcome to Sjogren's world.
When my rheumy first diagnosed me he started me on Plaquenil. He said it was to slow down any progression and within a year it had my blood tests reading normal. He said that proved it was working. It doesn't mean the SjS is cured though.
I've been on Plaquenil for 6 years now and have never had a problem with it. I think it has given me more energy and helped brain-fog. Can't say it's done much gfor aches and pains - but it does for some people.
Take care - Scottie :)
Hello and welcome newbies!
Most physicians treat SjS with Plaquenil. I was started on it (generic) in April 2010 and by July I had some saliva for the first time in years. Then my eyes got a little juicier! I consider those good results so I plan to continue. Didn't have any side effects either.
I just attended a conference by the Oklahoma Sjogren's Foundation and one rheumy and another research scientist agreed that Plaquenil is still considered the "magic" bullet for SjS patients. Just do your own research and decide what's best for you. PS- Don't let the possible side effects scare you as Plaq has been used by thousands for many, many years.
Hugs,
LeoLady
i have a simple question re: when to take plaquenil? can i take it with my fish oil and mutli vitamin??
i always 2 hours to take MY Doxycycline.. what about with Plaquenil??
Navigator wrote, "The standard dose of 400mg is set for the average American (140 pounds " but most of the posters (including myself are on 200 mg). Do they work you up to 400 mg. after a certain time on the 200 mg.
I have a little more energy since I've been on the Placquenil and really haven't had any side effects that I know of. It's just not doing anything for the pain. I have osteoarthritis or so I've been told. I have nerve damage in the lower lumbar region but all my doctors don't think that this is causing all my pain.
When I told my gastro that I had Sjordgrens and everything was drying up on me, he said including your joints. If that is the case, what medicine can they give to lubricate the joints?
Valene, the only scheduling I make for Plaquenil is to take it with food, and to allow a few hours between it and Magnesium supplements or antacids containing Magnesium. I actually take both 200 mg tablets together after breakfast, since I take Magnesium at bedtime. If your Multivitamin contains Mg, you might want to separate them from the Plaq.