Hi

I am diagnosed with multiple autoimmune diseases. I have been taking plaquenil for about two months but could not stand the lucid dreams and night time anxiousness. My doc wants me to try Cellcept, but the warnings on that med are pretty extreme. Has anyone had success waiting out bad side effects on plaquenil?

[bunch1974]

I was diagnosed with UCTD ( Undifferentiated Connective Tissue Disease) in December. I was prescribed Hydroxychloriquine then which I believe is the generic for Plaquenil. So far I haven’t noticed any adverse side effects and there is improvement in some of my symptoms. I’m sorry you had such a bad experience with Plaquenil and I hope the doctors can find a better alternative med for you 💕

[Hidden in reply to bunch1974]

bunch1974,

Thank you so much. I too was prescribed the hydroxycholiquin. I’m tempted to give it another go. I had great results other than the bad side effects

[Hidden]

Yes I too have multiple autoimmune syndrome and also failed to tolerate Hydroxichloraquine. I am on Mycophenolate now and for me it's been the most tolerable medication from this family and generally I have no side effects despite having failed to tolerate 4 other quite dramatically. I know we are all different but for me Hydroxichloraquine was the most effective med but Mycophenolate is the only one I tolerate really well although it isn't quite as effective for me personally as Hydroxichloraquine - it isn't used for synovitis/ RA and I have this in my overlap so this may be why.

[Hidden in reply to Hidden]

Hi Stalwart7,

This is good news, thank you for sharing

[Jmiller623]

Hi Bluefish. I’ll try really hard to be brief but I’ve been exactly where you are now.

Started Plaquenil and couldn’t tolerate due to palpitations and flushing. I gave it a good 4 months. I stopped and things got really bad for me so I tried CellCept. It was horrible for me. Blurred vision, BP 200s/100s, bad swelling. I tried it twice. Could only get up to 1000 mg. Landed me in the emergency room so I had to stop. Also tried Azathioprine. Very bad reaction to that as well. Also landed me in the emergency room.

So I went back on Plaquenil at the advice of a very well know lupus specialist in the US. She basically told me I had to go back on it so I did. I take a beta blocker so I can tolerate the Plaquenil. And you know after 6 mos, things did get better with a peak effect at 9 mos for me. Helped with skin, hair joints, lymph nodes the most.

I don’t want to scare you about CellCept. It’s typically very well tolerated by most. Most common side effect I hear about is nausea.

I hope this helps if even just a little.

[Hidden in reply to Jmiller623]

Hi Jmiller623,

Thank you so much for sharing your experience. I’m really concerned about trying Cellcept since one side effect is bronchial inflammation; and I have asthma. I really want to give another go at it with plaquenil.

[Jmiller623 in reply to Hidden]

I also have asthma/RAD. Never had a problem with that part. Hoping you find the right combo. It’s a journey I feel like we’ve all been on.

[Lupuslymph]

I have been newly diagnosed with Lupus SLE, Srogrens & Raynauds and put on Plaquenil 200 twice a day, 1 month ago. The first 2 weeks i felt really nauseous and off colour like i was coming down with something, as well as dizzy, broke out in a rash also, but was asked to persevere, am glad i did as i now have most of my appetite back and the rashes are gone so will keep going, and hope that i start to feel less fatigued soon and my usual seasonal rashes and reaction to UV is less this summer, fingers crossed! I heard it can take up to 6 months to see benefits, and if it stops my Lupus from getting more serious then its seems important 'insurance'. Good luck i hope you start to feel better soon!

[Hidden in reply to Lupuslymph]

Hi Lupuslymph,

Thank you so much for sharing. That is great news that you were able to overcome the side effects. I think I will give another go at it. Good luck to you and your continued good health.

[Jazzingjilly]

Hi .l’ve recently been put on this drug (last week) and reading side affects really scared me and I’m hoping to be able tolerate it. I’m not sleeping very well only a couple of hours but wonder if you found this and did things improve? Keep well

[Hidden in reply to Jazzingjilly]

Hi Jazzingjilly

I had the same problem, it was interfering with my sleep, and seemed to cause anxiousness which I normally don’t have. I stopped taking it for a week to make sure that was the cause; and it was

I’m wondering if those side effects get better with time. I was only in it for about 2 months.

[Kevin53]

Hydroxychloroquine can take several months for patients to experience the benefits. Best wishes Kevin

[Hidden]

Hi Kevin53,

Thank you so much, that is good to know. Best of wishes for you, and your health.

[Patches2019 in reply to Hidden]

So I first 3 months used the hydroxychloriquine then the 4th month my mom called into different pharmacy which ended up sending me in name brand. My issue was I’ve always had slight but very well controlled ocd. My daughter is just like me but on that stuff it was intensified to a point where I drove myself insane. I couldn’t sleep AT ALL I was spending money insanely (I’ve never been like that) making irrational decisions it was too too much! So at the end of fourth month bc numbers still were great he wanted me to continue that along with adding methotrexate. I said no, I was so awful anything that had been routine (like I’m extremely routine) was all stopped. I was spending money insanely, couldn’t concentrate on anything was literally all over the place and even extremely forgetful (I am usually really good). The side affects were too much for me and I decided to come off. Currently I am only on methotrexate and I will say my ocd is still not down to normal which is concerning me with central nervous system involvement. I still have much more testing to undergo as I am newly diagnosed but I knew 5 years ago something was wrong and apparently doctors did too as they were running test without me even knowing they were looking for autoimmune issues. Now the Rhuem doc said after seeing me one visit he knows I’ve had for years and happy they finally caught. I honestly have had the worst and most challenging last year of my life and adjusting to meds and feeling as if my mind is against me at times just adds to everything but for me the plaquenil I wouldn’t touch ever again, and I know thankfully it works for a lot of others but myself and maybe the predisposition with ocd it was unbearable. Before that minus this last year I’ve always been very level headed and even when I was being irrational I was level headed enough to notice it myself and “talk” myself down. Now I’m still over where I would like to be still not my norm but at this point I am not positive I will ever see that girl again 😢 in the meantime my house is loving me and I would say when I finish that’s when it will bug me but it’s rather large and I’m cleaning things no one thinks of so I have a while until I’m out of things to use the crazy on 😋 good luck to your next medicine 🥰

[Hidden in reply to Patches2019]

Hi Patches2019

I am so sorry to hear your experience; thank you for sharing. I am glad that you are starting to see some improvement. Try not to lose hope, give yourself time to heal back up. I wish you well, and better health

[FlowerdownAnnC]

Hi I’ve taken hydroxychloriquine for over 20 years now and at the point of starting it was so desperately ill I don’t think I’d have been able to distinguish between what were side effects & what was illness related. At first I was on Plaquenil but now have whichever generic drug is available with seemingly no difference between them for me.

I’ve taken various forms of immunosuppressive agents ( currently on methotrexate) and the combination of the 2 work very well for me .

There have been times when we’ve tried to take me off the hydroxychloriquine & the methotrexate. On withdrawal of either I tend to flare badly. I know I’ve been lucky to find an effective drug combination. I wish you luck with finding yours.

[Hidden in reply to FlowerdownAnnC]

Hi FlowerdownAnnC,

I am so glad to hear you have a good drug combination. I hope I can maybe ride out the side effects without them getting worse, because I really did like the benefits to plaquenil. I wish you well, and good health.

[tdbsnoball]

Ive never had any bad side effects. I have lupus also. Im taking hydroclorican. I sleep fine when im not in pain.