Wow. Sure glad I found this board. I'm in my late fifties, recently diagnosed with inflammatory osteoarthritis and secondary Sjorgrens--at least that's the current theory. It all seems a bit vague at the moment. The pain and fatigue are a problem, but it is the SS dry mouth/eyes/nose symptoms that are driving me batty! I've already learned a lot from browsing here.
But I have a question. I have just started Plaquenil. I have a history of GI issues, so am concerned about the stomach/bowel side effects I've read about. For those of you with GI issues on Plaquenil ... How long did it take for the problems to show up?
Thanks in advance!
Not every one has a bad experience with the drug as I did. I suggest that you check for counter indications, side effects, and interactions.
Hi Thea
Welcome to the boards.
Thus far, and I have been on plaquenil (generic hydroxycholorquine) since March 2013 and have not experienced any adverse effects.
As for GI issues, I am sure to take it with a meal (not on an empty stomach). And haven't noticed any associated GI issues (and I have GERD for many years and I haven't noticed plaquenil affecting the GERD adversely)
Oh a couple of points to be aware of IF you take OTC pain relievers, such as ibuprofen or tylenol or pain meds containing one or the other. Need to space apart between doses.
If that applies to you, check with your pharmacist and/or doctor. I have that situation and have to time my plaquenil an hour apart from ibuprofen and on days I need pain med, another hour apart for that. I am given to understand the issue is them hitting the liver at the same time and that by spacing out according, gives one the chance to process through the liver well before the next med.
Also, I am on 6 month retina exams (teensy risk of retina damage, teensy - so eye doc recommends 6 month checkups so IF there is a problem we catch it on the front end) and my rheumy runs bloodwork every six months while on this medication.
Amanda
I never had too much of a problem with it, but I believe the G-I side effects generally show up pretty quickly.
Most people do get used to the drug if they can stick through the initial "adjustment phase" - sometimes folks start on a lower dose (200mg/day) and work up to the full dose - often taking one in the morning and one at night. Some people do better with the brand-name than the generic, for others it makes no difference.
Always take it on a full stomach - that helps.
Many people find that taking it with dairy is a BAD idea...causes more gas and cramping. Not everybody, though.
Many people also tend to have VERY INTENSE and vivid dreams in the first couple of months on Plaquenil.
And it usually takes 4-6 months before you see the full effects of the drug - it takes quite a long time to build up to therapeutic levels in your system. The effects tend to be so gradual you don't really notice them - but one day in the late summer or fall, you may notice that you just generally have had more energy lately, or that you're more active and less achy. That's the Plaquenil! :)
I hope it helps you!!!!
I have been taking it for over 3 years now.
Never had any problems with it and it really has
helped me with my joint pain.
My rheumy said that if it always works for me...I can take
it for the rest of my life. I see my eye dr. every 6 months
to keep watch on my eyes.
eye2dry
Hello. I had some GI issues the first three months - had to figure how to take it with a meal and I also had to take some over the counter meds for the issues (pharmacist told me what was safe to take with plaquenil). After the three months and learning take with a meal, no more GI issues.
I also never suffered vivid, weird dreams. Everyone is different. Try to stick with the plaquenil for 6 months and take with a meal as stated by other posters. Also another poster had stated to be certain to space other medications and do keep on top of the eye exams.
Hoping it goes well for you and you have no adverse side affects.
Oh, I forgot all about the vivid dreams part. I don't get those often, but since being on plaquenil, did start occasionally having them. Maybe once every couple of months or thereabouts.
Considering I do not dream when asleep it was a "HUH?" moment for me when I had the first vivid dream. Especially when I woke up with a start. After that when they occur on occasion, I find them a bit entertaining actually. Like being in a movie and watching a movie at the same time. If that makes any sense. ;)
I have tried it 3 times and it it hurt my stomach so much that now I don't take it. I just treat the symptoms of SS as they happen.
Good luck!
Lesley
ellieas--Did it bother your stomach right away, or did you develop problems over time?
I just have to say thanks again for all the helpful replies. I know everyone is different, and I'll find out for myself over time. But it's great to have some idea of folks' experiences.
Hello Thea!
Welcome to you and all the new folks I may have missed saying hello to.
I started on plaquenil in 2003 and it broke me out in a bad case of itching.
My doc then switched me to brand name and not generic and it has been fine ever since.
Of course many docs and insurance plans later and I am on the generic and its good.
It definitely takes time to get the full effect of it.
Without it my symptoms would be worse.
Keep taking it with a meal and try to stick it out.
Oh I am on 40mg of prilosec for GERD.
Take care and we hope to hear from you how its working.
Thea- it took a little while for it to bother me and then it didn't get better until I stopped it.
Good luck,
Lesley
I started taking plaquenil 6 months ago. It has greatly improved my brain fog and joint pain, and helped with fatigue.
I have gerd but the plaquenil hasn't seemed to affect that.
However, I have very very bad gas and bloating. My hubbie and I call it the "fart pill" ;D
It started right away and hasn't diminished. I take it at supper so that I'm usually home when the gas starts which is a couple hours after I take it.
It is worth it, though, to put up with that side effect for the other benefits.
But everyone is different so hopefully you have few or no side effects from it.
Hi Thea,
I started Plaquenil two years ago. Prior to taking Plaquenil I suffered bouts of severe stomach pain, felt like intestines were in a vice. I had all the usual tests to rule out any pathogenic cause and was diagnosed with IBS.? Anyway, the Plaquenil didn't have any adverse effect on my GI System. I actually get fewer bouts of pain ( but do still get them) The Plaquenil was a life safer for me as it helped with the fatigue and overall achiness that I experience. I can now keep up at work (nurse). I still have flares, but it has helped. Good luck with everything.
I have been on and off Plaquenil several times (having to do with trying different combinations of things to see what works best).
When I start Plaquenil, I have stomach problems at first. An achiness, and sometimes diarrhea. Best bet for me is to start slow. Start at 200 mg, with food, in the AM. Gradually increase by 50 mg every several weeks, til up to 400. Tend to have a bit of discomfort at the increases, but am ok by the end of the process.
Other strategies are to take one in the evening, and one in the morning. If you do have a problem, do tell your doctor - s/he may offer a strategy that works for you. My rheumy says that some people are less tolerant of certain generic brands (there are several), and that they need a different generic, or they need the brand name.
Best of luck.
Welcome Thea!
It is difficult sometimes to know what is primary and what is secondary. Sometimes It's just the timing...but really the symptoms are the symptoms, and they need to be managed.
I don't take Plaquenil, so I can't comment on it. I do know that we are possibly going to react to medications in different ways, especially since we already have Immune Mediated issues in our lives.
You will have to find your own way. I take a medication (Cymbalta) for my pain that works marvelously for me (now). My husband tried it, and it stopped his pain cold, but gave him explosive diarrhea, so as wonderful as it was, he couldn't take it at all.
There are other medications that people take for the discomfort of dryness: do you take one of the saliva/tear film stimulating medications? Evoxac or Pilocarpine (or their generic versions?). Some people fine Restasis drops (RX) very helpful for their eyes. A humidifier in your bedroom during winter months is a must. There are many drops and sprays OTC that we all use in some version or another.
Let us know what you are using now, and we can suggest ways to alleviate your discomfort.
And HUGS and WELCOME, Thea.
Elaine
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.
:) 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!
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
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.
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?
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.
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?
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.
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.
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.
Quote from: Sleepy In Seattle on February 24, 2014, 01:48:20 PM
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.
Quote from: Thea on February 25, 2014, 08:39:41 AM
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! ;)