Quitting Plaquenil after 2 years

[Calli66]

Just wanted some feedback from anyone who has done this.

I wanted to quit because of continuing nightmares and my macular degeneration (getting worse, but not Plaquenil damage). I discussed it with my Rheumy and she said I could. My platelet count continues to go lower, and I have read that in rare cases Plaquenil depresses the bone marrow.

Anyway, I am to taper off gradually: 2 weeks at half dose 200mg a day, then 2 weeks at quarter dose, one pill every other day, then OFF.

Recently, I found a data sheet on Plaquenil here: http://www.medsafe.govt.nz/profs/datasheet/p/Plaqueniltab.htm
which had more information that the ones I had previously read. I was interested in the Ophthalmic section, which mentions corneal and focusing problems as side effects in addition to the usual retinal ones mentioned: "...disturbances such as halos, blurring of vision, or photophobia" and "...Reversible extra-ocular muscle palsies and temporary blurring of vision due to interference with accommodation have also been noted".

I've had these visual disturbances---I don't know if stopping P will change anything, and I guess I'll find out. I have a feeling that Plaquenil takes quite awhile to leave your body. I will be thankful to get a break from my nightmares. I know that it's accumulating in my brain cells, and wonder if my retinas are next.

I started Plaquenil the same month as thyroid meds, and felt better, but didn't know which one was helping. I guess I'll find out....

Calli

[Scottietottie]

Hi Calli 

My rheumy advised that I taper on to Plaquenil but said it was quite safe to just stop it dead. He told me to take a month off from it once. I just stopped it and resumed it after a month. It's different from Pred.

I hope your nightmares clear up.

Take care - Scottie 

[Calli66]

Hmmm. Now that I've decided to quit, I have to admit I'm tempted to just do it more quickly. Maybe somebody else will have heard more on this. My Rheumy didn't say it would be harmful to just stop----and I didn't ask.

Calli

[irish]

The only thing I can think is that when you stop the plaquenil quickly one might have a flare that occurs "slam bam". If you taper off the flare may come anyway but maybe it would be slower and more mild.

Did the doc mention going on another drug if you find that you need it. The DMARDS family of drugs contains methotrexate, imuran, cellcept, etc and many of these drugs are given to people with sjogrens to slow the autoimmune attack ono the body. Good luck. IRish

[Bernice]

I just responsed to a topic about this drug and the affects on eyes. I stated that because of the problems I already have with my corneas I was never given this medicine, I'm told by my doctors it's not an option for me.

[wen.uk]

Oh nightmares - how horrendous, can't imagine what it's like to have them every night, you must be terrified of closing your eyes at night and I truly hope they stop really soon.  You'll have to keep us informed on this one.

Word about the eyes - halos, blurred vision can be caused by dry eyes especially when there is damage to the cornea as a result of the dryness, also sign of infection.
Wen x

[Calli66]

The only alternative my doctor mentioned relates to my platelet count. She said if it got too low, I would have to take Prednisone.

I am "psyched out" by sleeping. Sometimes the dreams aren't scary, but just apocalyptic---destruction, burning, chaos. I don't have nightmares every night, but I dream vividly and continually all night (or so it seems) and then the aura of the content hangs over my head all day and mixes in with being awake. I have tried doing more exercise and getting up early and that helped some, but I felt I was losing the battle.

My eyes: I know that dry eyes cause many of the problems mentioned, and I'm familiar with that. But what has been sort of scaring me relates to focusing and maintaining binocular vision at a distance. At my eye test last February, the doctor tested me for cross-eyed-ness, and according to her, I would have to have a massive amount of prism put into my glasses in order to maintain focus in the distance. I decided not to have the correction put in, but I notice the problem at night and under low light or fluorescent light----seeing double. Maybe it has nothing to do with Plaquenil, but when I read that bit about Plaquenil affecting the extra-ocular muscles, I thought the symptom fit.

I don't know if my corneas are affected. The ophthalmologist mentions "pallor" of the optic nerve area---and "drusin" deposits. Reading the contraindications for Plaquenil, I was surprised that the eye doctor thought it was OK for me to take. He is a nice and jolly doctor, but maybe not as thorough as I need.

I am a bit scared of going into a flare from stopping the P all at once, but am impatient to get the drug out of my system for the sake of my eyes and brain cells. Maybe I'll do a "semi-fast" method----faster than the original dosage draw down, but not Cold Turkey.

Calli

[harrigan]

Calli, I understand how you feel about the dreams.  I regularly have oscar winning storylines, generally the sort of film I would never choose to watch!  They do linger into the day sometimes and generally just make me unsettled.  Hope you get some relief from coming off the Plaquenil and stay well too.  Let us know how you get on XX Ailsa

[Calli66]

Update on Quitting Plaquenil.

I've been totally off of it for one week. I'm doing OK.

The main thing I noticed was that at the end of 2 weeks on half dose of 200 mg day, the weird dreams cooled out and I started sleeping MUCH better. I have actually been waking up only once per night which is like a gift of the gods to me.

So mentally, I'm doing better. Trying not to ascribe aches and pains, digestive insults, and brain fog to lack of Plaquenil. But we'll see. At least now I know that I could take 200 mg per day, and not have the bad dream side effect. That's good to know.

Calli

[navydad]

Cali,, what other meds are you on,, RHeummy wants me to start plaquinel again,, but neuros haveme on neurtriptolyne (sp),,, neurotin and a few more meds I forget,, mostly vitamin supplements,, and of couse  Evoxac,, I;m actually tired of taking all these meds

[Calli66]

I only take Levothroid. I take the usual supplements, D, multi, cal citrate, mag, ocuvite.

C

[Bucky]

Calli,

I only take 200mg of Plaq. a day.  The doctor originally had me on 400 mg. a day but at that dosage I had too much "gassiness" - so he told me to go to 200mg and it hasn't been a problem any more.

Bucky

[Fosterlu]

I'm curious about what happened. I want to quit so badly!!!

[eye2dry]

hi Calli.

What were your main sjogrens symptoms 2 years ago?
Did the Plaquenil help with those?


I have taken Plaquenil 6 years now...it helped with my fatigue and joint pain.
Another drug I was put on 5 years ago was Methotrexate and I tolerated it well
but quit this year was b/c of my history of skin cancers....mainly to my face.
Seems there is a connection for some people with this drug. My rheumy even suggested
my discontinuing the MTX for this reason.....so I did.

I have never had a Plaquenil nightmare. I hope your able to withdraw from the Plaquenil
and that prednisone will be enough for you.

take care.
shelly