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Hydroxychloroquine delayed side effects?

Started by gmpurple, October 13, 2016, 06:20:09 AM

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gmpurple

I've been on the generic form of plaquenil (hydroxychloroquine) for about 8 weeks now.  When I first started taking it I had no side effects.  But over the last four weeks I've started to have really sharp neck pains, nausea, lack of appetite and muscle stiffness/weakness in my hands.  I know that plaquenil can cause nausea, especially when you first start taking it.  But I had none of these symptoms until I'd been on the med for a month.  Has anyone else experienced delayed side effects from Plaquenil/hydroxychloroquine? I haven't gotten any relief from taking the medication.  It's hard to be patient and wait for the medication to kick in and at the same time wonder if it's causing more harm than good.  Or maybe these symptoms are the Sjogrens getting worse, or something else entirely.  Thanks in advance for any feedback!
Primary Sjogrens SS-A >8, Epilepsy, C3-4, C6-7, L3-4, L5-S1 problems
Prilosec 20mg, Cymbalta 60mg, Plaquenil 400mg

eija

Eight weeks is way too soon to tell if it helps you or not. It can take six months, even more, before it kicks in.


I don't know how long I had been on hydroxychloroquine (Oxiklorin) before the nastyness started. I didn't realize the cause for it before I finally quit the med about year and a half later. It gave me horrible explosive diarrhea and a very noisy and loud stomach. The problem became worse all the time as time passed. Since quitting hydroxychloroquine my stomach soon went back to normal and I haven't had those problems anymore.

Female, 52, in Finland
Sjögren's, fibromyalgia, Hashimoto, depression, migraines, pressure urticaria, mild Raynaud's, MCS...
Cymbalta, Tyroxin, Oftagel drops

SunshineDaydream

I only had stomach problems with plaquenil that one time I forgot to take it with food. Some people do better on name brand plaquenil rather than generic so, if you are already taking generic with food, you may want to try name brand instead.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

cccourt1942

gm:
   It is true the hydro or the plaq takes about 6 months.  I have read where some notice changes within days and /or weeks.  But not ordinarily. 
   I am responding as I began on hydrochloroquine within about a month of starting a drug for epilepsy.  I was sooooooooo sick.  I was sick to my stomach, I was woozy in my head, my already sleeplessness increased, I began to stumble, I was sick.  After about 3 months I contacted both docs (rheumy and neuro) to inform them I was going to stop taking the meds, one at a time, reintroduce, and stop the other, etc.  I narrowed it down to the hydro.  (took about 3 weeks)  I was fine for a couple of months and the symptoms came on again.  Finally...after about  8 months overall..and another elimination trial as above...and I asked the neuro to decrease my seizure med.  Response was I had to wait 3 months for an appt.  I stopped taking it cold turkey...with no plans to start again. I informed the office...and miraculously an appt was found within 48 hours.  Agreement was to cut seizure med down by 75%.  The symptoms had decreased enormously before I ever saw the doc. 
    All that to ask: do you have a seizure med you are taking?  I take the hydro now and am fine with it. 
    Last comment: we are all different.  You can use search to discover responses to reactions to the hydro.  There have been MANY responses.  We all have the same disease, and some concomitant conditions, yet we respond to many drugs and treatments in an individual way.  I'm gonna go out on a limb and guess..GUESS...about 60 to 70% of us take the meds with little to no adjustments.  So when you read my story and my question remember each of us is different. 
   Good luck...and hope you are feeling better soon.
Sjoldier c3
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

gmpurple

Quote from: cccourt1942 on October 13, 2016, 10:48:38 AM
    All that to ask: do you have a seizure med you are taking?  I take the hydro now and am fine with it. 

Sjoldier I am not on any seizure meds.  I'm tempted to stop taking some of my medications just to see if any symptoms go away.  I'm trying to not give up on the hydro.  I'd just like to know if it's the cause of some of the side effects or not.  I'm afraid that if I stop taking it for a week that I'll have to start all over again building it up in my system.  I desperately want it to kick in.

I go to the rheumatologist on Monday and I'm going to ask about switching to name brand Plaquenil. 
Primary Sjogrens SS-A >8, Epilepsy, C3-4, C6-7, L3-4, L5-S1 problems
Prilosec 20mg, Cymbalta 60mg, Plaquenil 400mg

irish

You have two choices, you can quit the drug and let your doctor know that you are doing so and why. Or, you can stop and med and wait a couple months and see if you feel better. If you are adventurous you can restart the med and see if these issues come back. Also, you could try restart the drug using the trade name and see how it goes.

I took Plaquenil about 5-6 years and it did help. TooK some months prior to kickin in which is normal. I would have stomach upset with it and had to make sure I took it with food at a certain time a day./ This last year my stomach or reflux got so bad that I finally decided to quit the drug and see what happened. My stomach go so much better. I miss taking it though cause it did help with the fatigue and the inflammatory issues in joints. Good luck. Irish