Anybody taking Plaquenil for Sjorgens?
Posted , 12 users are following.
Please let me know about your experience with Plaquenil .
I am trying to decide if I should give a try.... thanks
0 likes, 29 replies
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Notes on Anybody taking Plaquenil for Sjorgens?
mandy95 katalin59838
Posted
I tried it for a few months. Caused vision problems (blurred vision) and muscle cramps big time in my legs.
Regards,
Mandy
katalin59838 mandy95
Posted
margaret22116 katalin59838
Posted
Currently taking it for Behcet's not Sjogren's and it has been great and without side effects. First couple of days felt unwell .....bit sick and headaches but that settled quickly and it has helped pain in my feet massively.
katalin59838 margaret22116
Posted
How long you taking it?
margaret22116 katalin59838
Posted
Not long. Just about a month now. Notice nothing unusual in my eyes. I had muscle cramps before I started taking it but if anything that is a bit better. My doc said try for 6 weeks and if it doesn't work or has side effects stop it. So far it has worked. I will def stay on it. But obviously every one is different. X
katalin59838 margaret22116
Posted
Thanks , it's helps with fatigue?
margaret22116 katalin59838
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shaq26875 katalin59838
Posted
I was diagnosed and put in on it in 2015...took it for 6 months....my joint swelling disappeared within 2 weeks. took myself off it in Dec 2015. In Jan 2017...had severe rib pain (couldn't take deep breaths) ER doctor said intercostal neuralgia...gave me NSAID....pain moved on to neck, shoulders, elbows ,wrists, knees, palms...went back to rheum in June 2017 got steroid injection and plaquenile and NSAID...and also anti inflamm gels, sprays ...fast forward 2 months ...pains eased off except palm and neck/shoulders...... had follow up with rheum ....said fibromyalgia and gave me other drugs (which I didn't take)....continued with plaq only....most pain gone ..except palm which has affected my middle finger......I have googled it and its not a Trigger Finger...as the tendon is raised and hard in the middle of my palm.
?So Plaq has helped me with all joint swelling and excruciating pain....except palm (and my middle finger which is bent inwards when I wake up).
katalin59838 shaq26875
Posted
Cloch47 katalin59838
Posted
Hi Kaitlin, I have been taking it for 3 yrs and find it really helpful for fatigue, so far I have had no side effects. It takes 3 to 4 months for it to take full effect. I also have cutaneous lupus and I haven't had a rash since I started taking it. I have an eye test every year to make sure there has been no damage, and regular blood tests, so you should be monitored while taking it. Good luck.
katalin59838 Cloch47
Posted
shaq26875 katalin59838
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I take 200mg x2 a day (same time morning and evening). I saw othamologist just after I started the plaq (this time round ) to get a base line of my eyes and will see him again at end of October.(4 months after the initial appointment This could be as I already have secondary cataracts in both eyes (haven't hindered driving yet...once it does I will get them removed ( by YAG laser...I think its called) I did resist taking the plaq when symptoms 1st started in January but by June I was in agony 24/7 with very little relief except knocking myself out for a few hours a night with pain killers.
It may be very different scenario for you should you decide against it. Hope whatever you decide will work for you
katalin59838 shaq26875
Posted
christina12418 katalin59838
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Hi katalin ! I've been taking Plaquinil for 6 years now. Before that I was miserable! I had so many symptoms and felt terrible! Within 3 weeks I could feel a difference. My fatigue was less, my eye pain was lessened, the nausea I was experiencing, disappeared. For me, it's been a miracle drug. By the way, I'm taking it for my Sjogren's. Now that 6 years have gone by, I don't think it's working as well as it use to but I'll stay on it because at this point I'm afraid to try the alternative meds. I'd say give it a try, you can always stop if you don't like how it makes you feel. Good luck, hope you feel better!
katalin59838 christina12418
Posted
shaq26875 christina12418
Posted
Has your Sjogrens affected more and more parts of body as time progressed or has it been the same areas when it first started but with flare ups and remissions ? Have you tried to stop taking the plaq, at all and gone back on it when symptoms returned ?
christina12418 katalin59838
Posted
christina12418 shaq26875
Posted
Hi shaq26875
I now have neuropathy in my legs which has really impacted my life. I've read on this forum that the Plaquinil has actually helped some of the other women with their neuropathy, but I don't think it's helped me. I do have flare-ups from time to time but they happen less often. I haven't gone off the Plaquinil since I started taking it.....don't want to chance feeling so miserable again!