I have been on plaquenil for about ten weeks now, although they have helped some of my symptom's my stomach is painful & my bowel is now in over drive & a little shaky.
I dont know what to do ' stop them ' or perceiver, anybody else had these awful side effects. Advice please. Jillymo
I take hydroxy chloroquine been on them for about 7 weeks and I'm getting these symptoms as well I have another appointment to see a haemotologist next month so will persevere til then and see what's said at that appointment
Oh snap,
As i have said above I could put up with loose motions but this is more than that. My stomach is sore, i now have piles & like a constant pressure in the rectum........not good if i carry on i shall look like one of those red bottomed baboons. Has it helped with any of your symptoms ? some of mine have improved.
From a very sore Jillymo. 
Yeah the fatigue has improved quite a lot it's early days yet so the pain has lessened but not cleared completely not had a headache for ages (touches wood) I do have a lot more motivation and my memory has got quite a bit better but I still have reminders about everything posted all over just in case I go back to my forgetfulness, so far so good apart from the total change in toilet habits but I am only like that in a morning and last thing at night, funnily after I take my meds. I'll have a word with the haemotologist when next there see if there's anything they suggest
Talk about a ring of fire. It's same for me i have a bit more energy & less of the foggy head, but i need to drop the hallo around my rear. how i wish my problem was just at night & in the morning......it's all day every day, yet i had to take laxatives before starting on this this med.
It's not the amount of times i have to go, its like passing some sort of acid because it's burning right through me.
I was on omeprazole but was told to stop them ! The Dr has now prescribed ranitidine in it's place. Jillymo
Thanks for your reply, i know your not doctor's but your a damned site more informative.
I'm taking 200mg Hydroxychloroquine i'm going to try half the dose for a while as i'm pretty sure it's the medication giving the problem, is this a generic ?
If it was a case of just loose bowel i could cope but this is seriously giving me problems with the stomach & bowel as it has now built up in my system.
I feel better in myself on them but i dont wish to end up with bowel problems on top of everything else. i already have diverticulitis & IBS
Lupus / Sjogrens symptoms have been so much better but i'm not taking one today & just half a one tomorrow. Jillymo
Hi Jillmo,
I have asked to start taking these and was told I would have to go to a rheumatologist and they would have to decide whether I need it or not?!? I said dont bother I've already got 3 ologists I don't want another one!!! I have read that they can make you lose weight so that would be the frequent visits to the loo by the sounds of it? My doctor has given me a table to settle my tummy as I take so many pills may be something like that would help? Go speak to your GP rather then keep waiting for specialist apps.. Take care keep us posted. Jo :0)
When I was first put on hydroxychloriquine the hospital pharmacy gave me placquinel. When I got a prescription repeat from my doctor the chemist gave me the generic hydroxychloriquine. I was so ill and had such dizzy spells, stomach ache and nausea. I went back to the pharmacy and told the pharmacist. He said he would contact the Dr and changed my prescription for placquinel. I've had no problems since. Hope you find answers soon.
That's interesting I will speak with my doctor to see if i can get it changed, these symptoms are not nice........who wont's sore bum. 
I seem to get that sick feeling anyway, but the rear symptoms are really getting nasty........I hope i find answer's soon or i shall look like the rear end of your site photo.
FIngers crossed I will get the med changed. Jillymo
Yeh your right Jo how many oligists do we need ? i now have a string of them.
Loose weight I wish, what are you taking omeprazole ? I was on that but i have been told it cant be taken with plaquenil.
I'm not going to take a tablet today & just half a one tomorrow, i've booked a Gp visit because i cant go on like this i will end up with serious bowel problem, wont that be great on top of everything else.......still it will put me under yet another oligist. Jillymo
I hope you're feeling better soon. I have coeliac disease so bowel problems are a pain in more ways than 1. Good luck jillymo xx
Do you get stiffness in joints which hadn't cleared with Plaquenil?
Have you tried steroid?
Just had a look at the side effects of my blood thinner clopidogrel, this can also upset the bowel its now become a toss up between the two meds.
I think i shall carry on with the blood thinner & stop the plaquenil for a day or two so that i can get the right culprit for my symptoms, it's all trial & error.
Hope your keeping stable, nice speaking to you. Jillymo
I know that St Thomas' and some other hospitals insist on sticking to 'Plaquenil' due to the fillers, you could try asking for that! You have had some good advice already. My daughter is on the maximum dose, split into two doses and always on a full stomach. MaryF
Good morning Mary,
I'm ' trying ' to get my medication changed to plaquenil but the Dr has referred me back to the rheumy in Bath, i'm now awaiting to see a nurse at the hospital about situation.
Seem's my Dr has passed the buck it's a cat & mouse game with nobody wonting the medication coming from their budget.
My Dr did changed the omaprazole for lansoprazole this has settled the stomach & bowel down but making me very tired & bloated.
I doubt if the nurse will be able to change my medication but it's a double appointment so i can express my concerns.......& i can assure you I shall.
I'm on 200mg may be i should halve them & take two smaller doses. Clopidigrel is also harsh on the stomach & bowel so thought i might ask if i can try Fragmin not that i know much about this med only what i have read on the site.
It's a case of not knowing what to do for the best, i'm now after a long battle heading in the right direction.
I'm also awaiting results of a synachen test, it will be interesting to hear the results. Jill
I do get stiffness with my arthritis but not been on the plaquenil long enough to say.
Never had steroids & cant say i wont them my weight is going up as it is........it's my rear end that's the problem at the moment........it's all so swings & round about's not knowing what is doing what or curing what.
Dont know about you but i feel old before my time with the stiffness, creaking & cracking.
The heat isn't helping, take care. Jillymo
Sorry you're having these problems. I take the brand name Plaquenil and like it so much better than the generic. I've found, however (by accident) that if I take the Plaquenil with a big meal, I get terrible cramps and diarrhea. I take it an hour or two before dinner or an hour or two after dinner, it doesn't affect my stomach. Experiment with the times you take it and, of course, speak to your doctor. I also have found that this site helps me so much.
Lovely to hear from you Loretta.
I'm taking the generic form of plaquenil with food, I shall try your method.
It is not just the loose motions that's the problem my stomach is so sore & a feeling that i wont to open my bowel all the time, it's so miserable.
I'm glad to hear your reaping some useful information form the site.
Nice talking to you. Jillymo
Try it. It may work. I like to take it with milk or water. I sincerely hope you have success. Nice talking to you. I need this site badly as I live in New York City in the US and honestly, little is known about APS, but I have a good rheumatologist who is a specialist in lupus and APS but I don't see her that often and she gives me blood tests and monitors me.
That's good to hear Loretta, a good rheumatologist is of great help.
It's such a battle when things aren't straight forward, we are complicated to say the least.
The heat here in the UK has made me very weak, what with this reaction to my meds i am now struggling. Take care Jillymo x
I was on Plaquenil for around 8 years or so. It did cause some bowel discomfort and persistent loose stool. Also I started to have cases of vertigo like "spins." Some so severe to the point of collapse. Have been off it since November of 2013. No more "spins" or bowel discomfort.
Hi Christopher,
Were you on the real stuff or gereric ? I'm taking hydroxchloraoquine & a blood thinner called clopidogrel. I used to have to take two laxatives at night to move me but not now.
My stomach is sore, my faeces seem to burn right through my colon even though i take the med with a meal.
I have been a bit shaky but i'm a bit off balance anyway, do you take anything in it's replacement ?
It's all such an awkward balancing game it's no wonder the drs get it wrong, even I dont know what is doing what anymore.
Thank you for mailing me, take care. Jillymo
The consultant told me not to take the omeprazole ! I always take the med's a few hour's apart with a meal. It is like having acid going through me my gut's I feel really raw inside.
I have just done one of those postal bowel cancer test's this has come back saying there is blood in my faeces so iv'e now got to do another........this will be posted tomorrow.
Both meds have been stopped just for today, tomorrow i will try half the dose of the generic plaquenil, i need to know what med is the offender.
I wish i could have a trial of fragmin & the real plaquenil to see if i was any better on it, my dr can be a bit of a battle. Sorry if spellings all over the place my heads shot with it all. Jillymo
Bless you Kirsten for your kindness, that's what i love about this site there is always somebody there for you. Jillymo x
I was having real problems with my bowel a couple of years ago. I had urgent diorhhea for three months and it was most unpleasant. I had a colonoscopy and a camera down my throat. The dx was "IBS" but now it's confirmed I have APS with ? SLE it makes more sense.
I found suppositories massively helpful as the whole area was red raw and inflamed. The suppositories stopped the vicious circle. HTH
Up until now i have always had to take laxatives, i'm sure it is the tablets that is the problem. It is not only the loose stool but its as if the motions are burning my inside.
Unpleasant is an under statement......what suppositories did you use ?
I do suffer with IBS & diverticulitis, but i cant say i have had anything quite like this.
There is a question mark over APS even though i'm on blood thinner's, the plaquenil is for my sjogrens & lupus symptoms.
I have got gynae this afternoon & i could honestly see it in hell.
Thanks for your contact Bonnie, please let me know what suppositories you used then i can get some from the hospital pharmacy. Jill
You were correct there is no reason why i cant take omeprazole with the plaquenil i rang the pharmacy this morning, why i was told not to take i really do not know.
I'm still in discomfort but not quite as bad, it will take a couple of days to calm down.
I cant go to the Dr's today as i have other appointments for today, but i can assure you i shall be going tomorrow. Thanks for advice what ever would we do without this site ? Jillymo x
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