Plaquenil Side Effects

[nannysbaby]

Welcome Thea, I have been on the generic for Plaquenil (hydroxychloroquine) for a little over 6 years.  It has worked well for me and been at a reasonable price.  When I think how much meds cost these days, I have been very grateful that the med I am on is not that expensive.  At the beginning, I had some stomach distress and my dr encouraged me to persevere.  He said to take it all at once at my biggest meal of the day and that has worked fine for me all this time.  I hate to think of how I felt before he put me on this medication.  It has helped in so many ways.  I really can not think of any adverse issues connected to it, other than it was hard to wait 3-6 months for it to 'kick in.'

I hope you will have a good experience also.  Welcome to the group.

[Thea]

  I feel I suddenly have a whole bunch of new friends!

Fart pills? Oh oh--I'm already quite talented in that area! hee hee I won't jinx things by telling you that I'm so far (four days) not feeling anything negative from the Plaquenil.

I was initially referred to a rheumatologist last fall because my new GP saw some red flags in my situation. I've had joint pain (hands, feet, neck esp.) for years and increasing general malaise--feel like I have the flu all the time. But I've had an active life with horses, so figured it was just aging with some osteoarthritis and pain from old injuries thrown in. I got to the point where my stomach could no longer tolerate Ibuprofen or Celebrex, and things were getting pretty bad.

It's been a few months of getting tests and seeing opthamologist, ENT guy, etc., during which time everything, including the SS symptoms, have gotten worse rather quickly. I'd initially just thought it was pollen, wood smoke, and so on, so hadn't actually reported the eyes and mouth. At this moment a bunch of stuff is underway--twice weekly treatments for my mouth to prevent tooth decay, gel for my dry mouth, awaiting results of a CT scan because I have a lot of face pain with no obvious cause, saline spray for my nose, and am using various eye drops pending starting the Restasis (hope I got that right--cyclosporine?). My blood work doesn't show anything--I'm perfectly healthy, apparently! LOL But it has been explained to me that the blood work isn't the only criterion, and that it may change over time.

My rheumatologist isn't a great communicator, but I think he's doing a good job working on the diagnostics. My GP has explained that this is a process that can take some time to sort out, and that they don't fully understand the kind of inflammatory arthritis that I have.  Reading all the great information and personal experiences here has helped me feel reassured that what's going on isn't all that unusual.

Sorry--this got rather long!

[Carolina]

Yes, Thea, there are lots of us who completely understand the 'perfect blood work'.

I seemed to have the symptoms of so many things, and perfect blood work, until I was tested for Immune DEFICIENCY, the opposite in some ways of autoimmune conditions.

AND the Primary Immune Deficiency that I have also has autoimmune conditions with it!  There are even some people here who take things for Sjogren's AND infusions for Immune Deficiency.  Bolstering the same immune system they are suppressing.

Hard to get your head around.  But that's what this is like, autoimmune inflammatory conditions are mysterious, confusing and complicated.

Yes, you have lots and lots of company on this journey.

I see my dentist three times a year, to guard against further deterioration of my teeth.  I've been lucky so far (by that I mean I have all of my teeth, reinforced as they are, except one implant) and am pleased to be celebrating my 72nd birthday next week end feeling as well I have in years and years!

I've gotten SO MUCH help here, it's hard to quantify...but I can qualify it has the best thing on the internet for those of us with Immune Mediated conditions.

Hugs,

And your post isn't a bit too long.  Short by my standard.   

Elaine

[stillinshockwithsjogrens]

When my Rheumy decided I should try Plaquenil - according to him, every Sjogren's  patient should be on it; he told me it was an immune system modulator, not an immunosuppressant, and be sure to take it with a meal, lots of water and I should not have side effects.

Lo and behold a month later, I broke out in a rash so severe, my Rheumy sent me to the Dermatologist who was quite impressed by the blistering rash all over my body, back, arms, stomach, legs.  Prednisone and prescription strength steroid sprays calmed things down after a few weeks.  I haven't tried anything since and refuse to try Methotreaxate. 

My body processes medications in a weird way; basically it doesn't like anything foreign in my body...antibiotics, etc.  This is quite an adventure.

[purplegirl]

Hi stillinshock

Gosh that sounds scarey! I took plaquenil for 5 years and only in the past month and a half have I had severe and unbearable itching which my rheumatologist feels is caused by the medication. I also refuse to take methotrexate as I am too afraid of the side effects (what are your reasons?)

What would be the next step for us if we cant tolerate plaquenil and metho isnt an option?

[kathND]

I just started plaquenil, encouraged by the lovely people of this board--and so far, so good.

I was curious: for those of you who have taken plaquenil (or the generic version), have you noticed it helps with the eye/mouth dryness? I'm hoping it'll help me there. The dry mouth is driving me nuts. I know it's a relatively small discomfort, but one nonetheless.

[stillinshockwithsjogrens]

kath ND, For the short time I took Plaquinel, I felt a difference in 2 weeks.  Eye, mouth dryness, nose dryness/inflammation, joint aches.  Everything felt a little better.  I was looking forward to seeing what additional progress I would experience in the following months.  I'm obviously allergic to Plaquinel after the skin rash, but hope it helps you with your discomfort.

Evoxac does help with the dry mouth, if you're not taking it already, it's definitely worth trying.  Biotene mouth Rinse (not Wash or Spray), and Xylimelts also helps. 

purplegirl, I am afraid of Methotrexate's side effects, too.  That is the question, what can we do if our body cannot tolerate medications made to help us?  I take Aleve and Tylenol on a full stomach; that's all I can do for now.  I've also started to modify my diet to cut down on inflammatory foods.   Have you stopped taking Plaquinel?

[Sleepy In Seattle]

I just wanted to chime in here that Mtx may not be as scary as it sounds...for many of us, it's WONDERFUL, taken either orally or by injection.

I refused to take it and wish I had, because my Lupus/Sjs progressed and attacked my ear, and now I am deaf in one ear. I was on Plaquenil before, now I take Plaq and Mtx, and IT HAS GIVEN ME MY LIFE BACK.

I had a few side effects at first, but worked with my doctor to adjust the amount and timing of doses, and upped my folic acid intake (taking folic acid - a B-vitamin - significantly relieves side effects from Mtx), and now I have no noticeable side effects at all.

I went from being achy and vague/brain-foggy all the time - even on Plaq - and needing to sleep half the day to being back at almost normal health. I have gone back to a full schedule of horse-training (a very physically demanding job!) and family duties.

Everyone reacts differently to medications, and Mtx won't work well for everybody - but I'd urge you not to reject it without trying it, if you are really suffering. Please remember that the disease can also cause permanent, irreparable damage to your body - sometimes much worse damage than the medication. It's a cruddy position to be in, to have to choose serious meds or being eaten alive by a disease - but that is the position we are in.

Yes, Mtx is a serious medication - but in many cases we are far healthier WITH it than WITHOUT.

Until they find a cure, we all have to find ways to keep this awful disease in check.

[Carolina]

AHH, another lesson in the truth that everyone can respond differently to the same medication.  It is so true.

If 'it worked for your Aunt Mildred', great, but don't count on it working for you.

1.  I have had medications work for me, stop working, and then become impossible. 

2.  I have had medications work wonders for me, and give my husband explosive diarrhea, and yes stillinshock, it helped his pain, but you can't go through life with 'brownleggers' (poop running down your leg).

3.  I currently have a wonderful treatment that is 100% natural, something my blood lacks that I have infused in my body from wonderful donors.  And my immune system throws a HISSY FIT about 48 hours after the IgG is added, and goes into a hyper flare.

So I'm taking Prednisone to suppress the reaction, because I really need IgG added to my body, since I don't have enough, and it fights infections.

Nothing is perfect for everyone, except maybe enough oxygen?  Water, I don't think anyone is allergic to water, either.  After that, who knows?

Hugs,  Elaine

PS I have close friends on Plaquenil, Methotrexate and Humira or another biological.  They're fine.  Trust your doctor, trust your own responses.

I suggest that everyone ask for an RX for Epipens, to keep at home for sudden allergic anaphylactic shock situations.

[nannysbaby]

KathND, I have found the hydroxychloroquine helps with the dryness of the eyes and mouth.  I still have to use drops when I am at the computer and sometimes when I get up in the morning, otherwise I am doing good (I can tell I am not flaring at this particular time and am feeling improved right now).  I hope this feeling lasts for a little while (or a looooooooong while).  I am trying to sell my house and move and ya'll know how that goes!  Even though my house is for sale, it does NOT look perfect and never will.  The "Better Homes & Gardens" days are over I'm afraid.

Cheers.

[Thea]

I have gone back to a full schedule of horse-training (a very physically demanding job!) and family duties.

Hey, another horse person on the board! Your post is really encouraging. At this point, I'd be happy to be able to manage a quiet trail ride. I'm optimistic I'll be able to get back in the saddle when the weather improves in spring.

[Sleepy In Seattle]

Hey, another horse person on the board!

There are a few of us on here....those ridiculous animals keep us active and off the couch even when these horrible diseases try to get the best of us - even if it's only a "quiet trail ride" or simply to go to the barn and kiss some noses. Best therapy out there, if you ask me!