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Posted By : LAWCHICK - 6/25/2012 8:52 AM

I recently decided to stop taking Plaquenil because I was having constant chest pains even more so than I usually have due to Lupus. Since I have not taken it my chest feels so much better which is odd because chest pain is not listed as a side effect. Also I noticed that the Plaquenil I think was making me feel different but not in a good way. Plus I will be honest the whole eye site thing even though rare has always freaked me out. I am not sure what to do about this. I went off of it to see if I can manage not being on it as my lupus isnt as severe as other cases but already I am feeling very fatigued and my legs feel heavy if that makes sense. I have only been off of it for a week. I can discuss alternatives with my DR at my next appt but my DR feels as though the plaq is the best bet for my level of illness. 

 

Has anyone had to stop taking this? If so are you just dealing with Lupus symptoms or did you take another med?


Posted By : LAWCHICK - 7/10/2012 8:18 AM
Anyone?

Posted By : Elbee - 7/10/2012 8:40 AM
Sorry I don't have a response, LC. I'm on Plaquenil, and after the first week's GI upset, I have had no problems with it.

Did you take yourself off Plaquenil, or did your doctor tell you to go off it?

And as far as the vision issue goes, toxicity causing vision loss is very rare if you are on the right dose for your height and if you get regular eye exams. And those who do get toxicity have usually been on the drug for years and years.

Sorry I don't have anything more useful to say, but I am sorry you're having trouble with Plaquenil!
Hashimoto's Thyroiditis & UCTD // synthroid, hydroxychloroquine, ranitidine, naproxen, tramadol

Posted By : Angelsway - 7/10/2012 9:01 AM
I have never taken Plaquenil, but I do manage without it. I starting with taking 2 evening in primrose 1300 and then needed to go to 4. I also worked my way up with fish oil to 4 a day. For the inflammation I take Tumeric Curcumin 500mg at 4 a day.
One a month at least 2 hrs. after any med or vitamin I take 6 charcoal pills the first night and follow with 4 charcoal pills each night for a week. This seems to get rid of the toxins and keeps the sores I get under control. The fish oil and evening in primrose help to raise your GLA to keep you ANA more balanced. When my GLA is off...so is my vision. You should see an ophthalmologist to make sure that there is nothing serious going on. If you take anything over a baby aspirin your GLA will drop like a rocket. Besides all of this, try not to let it get to you. Think of it as a challenge and you are going to win. Eat well and check out the sites on good food for you and the foods that will trigger a flare up. Get plenty of exercise, walking is great. You need to keep your body in as good as condition as possible.

Posted By : LAWCHICK - 7/11/2012 11:14 AM
Hi Elbee, my doc knows I am off of it. See the problem is I get chest pains as part of my lupus but I noticed that this was a tad different. Also I was feeling kinda funky too so right now I am just seeing how I feel.

I have however noticed that my allergies started in full gear soon after I stopped taking the Plaquienil I thought that was odd. I was literally fine but now I am doing eye drops and allergy meds when prior to stopping the Plaquienil I was ok. Aslo prior to starting it I had severe alergies and had to be on 2 forms of eye drops.

Thank you Angels for all the info. I do see my ophthamologist every few months and my last appt everything was a-ok.

Thanks again for your replies.

Posted By : momofltlbrat - 7/11/2012 12:57 PM
Hi Lawchick,

I had to go off Plaquenil because I did have eye problems from it but I had been on it for over 20 years. I had pains like your saying, heavy legs, aches and pains, severe fatigue. My doctor has me on meloxicam (sp) and savella. I was so afraid of savella because of all I have read, but decided to give it a try. I take 25 mg in the morning and evening. In the because the nausea and dizziness was awful and I thought I wouldn't be able to tolerate it, but I tough it out because it was helping with all the pains and the fatigue. It took awhile but now I like it. Can't I am always pain free, and sometimes I sit down and wake up without realizing I fell asleep lol, but then again I never realized how much Plaquenil helped until I stopped taking it.

Hope this helped some. But what works for one of us, doesn't always work for others, remember that too.

Have a good day today, I am, and I am glad for that.
Debbie

Posted By : pbjsammich - 7/12/2012 11:14 AM
Hello Lawchick, I only took Plaquenil for 3 days. 1 pill 200mg X2 daily. I had some weird symptoms and I did notice a difference on the first day of how I felt. my shoulders didn't feel so awful. When my doc was telling me about the plaquenil and some symptoms I might experience, he told me to stop taking it if I felt weird in any way. ok, my tongue swelled and felt itchy and burny. Well, after day three I decided it wasn't a minor thing and called my doc. So now, no more plaquenil....I am on nothing and I'm in pain all over again. yay me. I haven't told me parents it's getting hard for me to move again, I think they'd flip.
One thing I did notice is my eye sight was getting fuzzier. I knew this was a possiblity, but I only took it for 3 days..hmmm. I was on methotrexate before, but it started causing problems, I think that didn't help my eye sight at all. I was beginning to have problems focusing.
I sit here all bummed about things in general. I too, have noticed my ever present allergies are having a party with out me since Sunday evening.
Things could be worse for me, it could be last year at this time, I didn't have a diagnosis yet. oh well.....
I hope you find that magic mixture of drugs that will work for you soon.  
pbjsammich :p
RA SLE
Acid Reflux/GERD

Posted By : LAWCHICK - 7/12/2012 11:52 AM
Hi guys,

I actually just started Plaquenil again. I have decided that I am better off taking it than not taking it. Even everyone at my job was concerned and thought I should give it another go, they could tell how sick I was getting.

PJ it is odd that you would have eye problems after only days but I everyone reacts to side effects differerntly.

Posted By : pbjsammich - 7/12/2012 1:33 PM
Lawchick, yup well considering I now weigh somewhere around 97lbs. I'm thinking drugs affect me faster....
I do hope the plaquenil works for ya this time around..

Posted By : Triple L - 7/13/2012 10:02 PM
Hello, just thought that I would share my experience with plaquenil and I can begin by saying that it is very limited. If you have had the opportunity to investigate the medication you know that it is an anti-milarial. Since we know that milaria is an aggressive condition we can assume that plaquenil is a big deal. The drug is not for everyone. I didn't do well with it at all and believe that it made my symptoms worse. Yet, I have been told that it is a God-send by many people. I have read that you are experiencing a good result on your second go round and I wish you continued comfort and eventual remission. I have been treating for Lupus for twelve years and I have learned to view the medications like a "Mad Scientist", Lol! Some medications work and others don't and that is all a part of the journey. We deal with the specific symptom and hope that it goes away. After awhile you'll be as well versed as your doctors. After all, you know the most about what makes you feel better and the doctor takes a "history" at the beginning of each visit for just that reason! Glad you're doing better! L

Posted By : LAWCHICK - 7/17/2012 9:50 AM
Hi

PJ- I have the same issue. I weigh 92 pounds (5'2) and I actually just take 200 mg's of the med due to my low body weight. Maybe just the once a day dose would have been best for you too.

Triple L- Thank you. I am feeling better with the fatigue. I guess it just takes getting use to the fact that you have to take medicine to feel better but hey it could be worse! I was concerned I would relive the horrible start up side effects of Plaq but I actually havent at all.

Thanks for the replies!

Posted By : pbjsammich - 8/3/2012 8:15 PM
Lawchick, I was wondering how the Plaquenil is going for you. I decided to start taking one pill and see how it goes. I've been on it for a week now, no fat itchy tongue. yet...I decided to give it another try since there isn't much else I can take and well, what have I got to lose?HA!!
Hope things are going good for you
pbjsammich :p
RA SLE
Acid Reflux/GERD

Posted By : CraigJ - 11/9/2014 6:01 AM
Hi,
I have tried stopping Plaquinel about 5 times over 34 years and have had to restart on day 4 or 5 every time.
Two days ago I stopped again, because I have now been diagnosed as having the beginning of some early signs of Mackular problems developing in one eye. I have always had two visits to an Eye Specialist yearly.

My problems may be just beginning as I have been on this Drug Plaquinel for so long. My specialist wants me to stop immediately which I did two days ago for a period of one month, then to I re see the Eye Specialist for an update.

I am a bit more than a little concerned as to what my Lupus/Sclerodoma will get up to over that time period. I have had a reasonably good run on Plaquinel over all those years.

Does anyone know of an alternative drug to Plaquinel ?

Thank you,
Craig

Posted By : couchtater - 11/9/2014 1:23 PM
There's methrotrexate, cellcept, and imaran(?).
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : steeve - 12/3/2015 9:05 PM
@LAWCHICK : I would like to know the kind of chest pain did you get when you were on Plaquenil?

My son his on Plaquenil and he complained about : Constant pain and worse when bending forward. He compares the pain to that of a small pericarditis.

He do all of his day at school including sports but the plain is always there.

The pain started about 1 month after he began to take Plaquenil (hydroxychloroquine).

Posted By : nodakmickey - 11/26/2016 7:12 AM
Have been on hydroxychloroquine for about 6 years now. Since I stopped eating meat, chicken, and most dairy, I have been off prednisone for 6 months. Am really worried about my eyesight. Is getting worse. I have cut my dosage in half and now quarter. I want to quit cold but am afraid of a return of my lupus symptoms. And I don't want to go on prednisone again. I also take methotrexate. Any advice from anyone with lupus? I am a male by the way.

Posted By : Lynnwood - 11/26/2016 8:31 AM
Nodakmickey,

You have posted to an old thread, so I doubt any of the previous posters will be along to comment.

1st, don't change your dosage without consulting with your Dr. I see you have already cut your dosage in half. If I remember right, this is a med that really only works at full dosage - if you haven't talked with the Dr, do so soon.

2ond, this is a med with known side effects for eyesight. You should have been having eye checkups for Plaquenil at minimum of every year. Here is a quick site to help you check Check Your Eyes, but you really need to see a ophthalmologist (not optometrist) ASAP. Make sure to tell them you are taking Plaquenil so they do the appropriate tests. (These tests aren't done in a normal screening, you need to request them.)

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : nodakmickey - 11/26/2016 9:08 AM
Yes, have had eye exams each year and they do the ones for hydroxy users. But I have read that when they do find damage it is irreversible and may continue to worsen. Maybe until you are blind.

Posted By : Lynnwood - 11/26/2016 1:09 PM
No, that is the opposite of what we have always been told. It is REVERSIBLE and stops when you quite taking plaquenil, in addition eye damage is very rare.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Chellety - 12/3/2016 9:45 AM
lawchick my name is chellety and yes i have had horrbile side effects with the plaquenil they say it is suppose to be the best medication you can use for lupus but i was getting symptoms of that of a diabetes patient like gout in my toe, it was horrible pain and burning OMG, sounds weird but i stop taking the plaquenil and stuck to predisone, may be hydrochloriquine the generic brand might be easier on you, but everyone is different smilewinkgrin

Posted By : nodakmickey - 12/3/2016 12:14 PM
Wow Chellety,
I was on hydroxy and methotrexate to get off of prednisone. Since I gave up meat I have been able to quit prednisone and now am slowly trying to quit hydroxy.

Posted By : Chellety - 12/7/2016 5:00 PM
that is awesome, thats wonderful, im actually trying to come off the predisone myself, i'm trying to come off meat as well turn

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