Plaquenil side effects/dosage comment

[Calli66]

I just reduced from 300 mg to 200 mg per day--my Rheumatologist suggested it. My main side effect is vivid/constant dreaming all night long, which makes for bad sleep and daytime mental confusion. During the day there's always something "going on" in the background of my mind like----multiple thoughts, internal dialogues, etc. ---the Plaquenil effect.

It has been wearing me down and trending toward depression. I can keep some of it at bay by making sure I don't oversleep (I have to define very clearly the demarcation line between sleeping and waking). During the day, I have to get more physical exercise---workouts, yoga, Jazzercise---and this helps. I had lowered the dose from 400 to 300 last year, and that helped, but the side effects started coming back, so now I'll try 200 mg.

I don't like it that I'm always on the verge of "losing it" emotionally. I can feel perfectly OK one minute, and some little thing will happen---usually a family disagreement---and boom, I'm all choked up, throat in pain, trying to ward off crying (and not succeeding). My short term memory storage isn't stable; I forget things so easily, and it's embarrassing and emotional for me when I'm confronted with gaps and inconsistencies----when the way I remember things doesn't match up with other people's, and I know it's ME that's the problem.

Thanks for listening.

Calli

[dbab]

Wow Calli,  I have never heard of this with Plaquenil.  The only side effects I had with it were a bit of nausea in the beginning but that was a couple of years ago since I got that.  I'm sorry that it's affecting you that way especially since it is probably one of the best medications we can take for the most part.  What does your doc say about it?  Are you taking any anti depressants / maybe that can help you as well?  I hope the dosage decrease helps you.  I hate to see when people can't tolerate Plaquenil because of the benefits of the med. 

[Scottietottie]

Hi Calli 

I'm sorry Plaquenil does this to you too.

I know how unsettling really vivid dreams can be but I had them when I was a) menopausal and b) undermedicated thyroid wise. I'm pretty sure that was before I was on Plaquenil, so I also had lupus/Sjs but wasn't being treated. I had a horrible year of vivid dreams and imaginary loud swishing noises as I dropped off to sleep. All this not helped by a friend who decided I was having 'psychic attacks'.

I never worked out what exactly was causing the problem. 200 Plaq wasn't enough for me - I needed 400. Recently I still get the odd loud 'swoosh' before sleep but the dreams are back to normal.

I hope cutting down your dose works for you.

Take care - keep us posted - Scottie 

[Chico]

Calli:

I can relate to your dreaming problems and also Scottie's swoosh. I seem to do that all night coming awake with what I call intrusive thoughts unrelated to what I was thinking during the day.

Have made a point of now taking my full Plaquenil dose with lunch which helps.

Wonder when you were on 300, did you cut a pill in 1/2?

Good luck,

Chico

[Scottietottie]

Hi again 

Didn't think about it before but I always take my 400 at breakfast - well away from bedtime.

Take care - Scottie 

[Calli66]

Yes, I was cutting one of the pills in half and taking the 300 mg at breakfast with food----same reasoning---wanted it far from bedtime.

Just had my thyroid test---no hypo there---so I guess the restless brain problem's not due to that.

I sort of hate to go down to 200 mg. The doctor said she wanted me to take Plaquenil long-term, and if it meant taking a lower dose to do it successfully, she was fine with that. I'm going to try it for 4 months----until my next Rheumy appointment. If it doesn't make any difference I can go back to the 300 mg per day.

I don't particularly want to go the way of taking anti-depressants as long as I can keep figuring out how to deal with this. I've changed some of my daily routines: more exercise, less time on computer, sleeping schedules. These things help, but since it takes more discipline than I'm used to imposing on myself, I back-slide quite a bit. I've gotten used to changing my eating habits to deal with belly troubles and have gotten good at my treatment plan with my dry eyes, too. But getting a handle on My Mind is not so easy. Sounds weird to say it, but I have to be careful about what thoughts and images I "ingest" via movies internet, novels, politics, etc. If I don't, they "back up on me" like bad digestion----hang around and bother me long after they "normally" would.

Calli

[Chico]

Calli,

Can relate to your ingestion and rehashing what you've seen and read during the days turning into these wild thoughts all the time.  One term I like is unwelcome  intrusive thoughts. Funny that most ideas have absolutely nothing to do with what's really going on in my life at all.

Never had this problem until I began Plaquenil on 1/30 this year.

FYI: I started on an antidepressant just 1 1/2 weeks ago. Am sleeping much better already. Like you I was trying to push myself to excercise, instead just wore out my body.  Ended up with a big infection and the world was turning gray around me.

So take it easy,  and I'd sure talk to your Dr. soon. I waited too long once and caught the Big Depression in 1991, don't want to ever go thru that again.

Let me know how you are doing. Am thinking of you- even during the night.

Chico

[lcm]

If you haven't had your vitamin d level checked I think it would be a good thing to do. I had similar symptoms of emotional sensitivities and brain dysfunction when my D level was low. I'm still not back to baseline because of SS but am better on the Vitamin D supplements.
SS seems to involve a lot of things happening together, which can be challenging when you are trying to figure out the why's.
I started Plaquenil about a month ago 200mg twice daily. At times I seem to have stomach pain. I also started Salagen at the same time. It's too soon to say whether it is doing much so far. The salagen seems to help my mouth so we will see. Good luck.

[Calli66]

Thanks Chico and Icm,

Yes, "intrusive thoughts" is the right term---I'm avoiding calling it that for now, and just hoping the thoughts recede. Do you mind saying which anti-depressant you decided to take? I am open to it.....maybe....I'm kind of scared to take something. I did describe this effect to my Rheumatologist last week; it's important, and I shouldn't "make light of it" like I have had a tendency to do in the past. Thanks for thinking of me.

I have had problems with low Vitamin D, and took the high Rx doses for awhile last year. I now take about 2000 units a day extra (in calcium supplements, multi, and D-3), and my last test in Dec 08 showed that I'm well within normal range---good, actually.

We'll see how the new Plaq dose goes.

Calli

[Rostradamus]

I've tried plaquenil twice and it was so bad on my eyes, even white spot at edges of vision.Yes stomach cramps, diarrhea, terrible nightmares (I have the answer to that) and sleeplessness, which I often write of I'm so ,was so hyperconetic. Multiple thoughts I trained at a young age. Control can be a problem. Try occupying your mind with a background song to focus one tract in your head . Going to sleep build a story, every night try to reveiw it makeing it more complete and building it. See it, immerse yourself with it, make it an epic adventure. I have several I work on. It also helps counter the fustration of these new limitations ,I lived the adventure befor.  NIGHTMARES!! Black Cohosh, it's greatly used (couple thousand years) by the Chinese as a female hormonal balancer, has natural estroge in it, very good for hot flashes and night sweats. Now Brain fog and mental clarity Ginko Biloba and Gotu Kola are even used for Alhiemers. I couldn't use helpfuls like these until diagnosed and often in the morning I didn't know day ,morning or when, what roon I was in and had trouble putting words together. I had to write down my herbal combos for different things so I could take the right things when I was too stupid and fogetful.  As for as formal drugs a valium now and then is not very addicting , you can take it one night to sleep. It also sounds like  you are emotionaly ,physicaly stressed.  Schizandra nurishes the depleted adrenal gland,and helps a person handle stress. It tastes like Blue berry, Black berry. I use it in my homemade salad dressing , every body loves it.  Of course  B-6, B-12 are good for stress. Yes it's difficult, emotional fluxes from no where, you realise it, yet that dosen't fix it. You can tell your loved ones it is part of the disease. And still the flares hurt you and ones you love. Perhaps down load a few things from her showing you are not the only one that struggles with it. It's hard for me , I'm the shoulder to lean on since I was 16, the rock...and now with all my mental dissaplines ...I crumble.   If you ever need resources ask.  Nostradamus   P.S. Last night I posted to SassieCat with book and web site referances.

[Chico]

Calli,

I'm trying "Pristiq", my GP gave me four week's sample of pills to see how they work. Am on day 13 with no bad side effects and will see how it goes from here.

Am sleeping better already, intrusive thoughts are almost gone. They were really causing high anxiety.  Wishing you some peaceful thoughts.

Chico