Stomach upset or hydroxychloroquine?

Good morning. Hoping that some of you might be able to give me a little advice. I started taking hydroxycloroquine 16 days ago (I'm also on leflunamide and prednisolone). I had very mild nausea for about the first week, then it all seemed to settle down, until Tuesday this week. My innards started making loud gurgling noises, and I then had the most awful wind (sorry). I chewed some fennel seeds, but they've had no effect. Then yesterday, I felt really rough - wobbly, nauseaous, and having to rush to the loo. I wouldn't be so concerned but I'm starting work on Monday and I can't not go as I'm on an intense two month training course. I just wondered if any of you had suffered anything similar?

29 Replies

  • Hi--- I don't know where you live but where I am -- Lancashire- there is an awful stomach flu going round. It's hit me like a ton of bricks , horrid. Maybe it's something like that. Get well soon and good luck with the new job 😊

  • Two of my in Warwickshite have that terrible tummy bug..flu like symptoms too.

    Take care...hope the job is great!

  • Thank you - I'm nervous but looking forward to it

  • I didn't have loose bowels on hydroxychloroquine - but had awful ones on methotrexate. But it's listed as a side effect. Difficult to know whether it's that or due to other factors - even anxiety about the intensive course you are about to start.

  • I had terrible nausea and sickness on both sulfasalzine and methotrexate, hence why I was put on leflunomide. It could be a bit of anxiety I guess. I'm naturally nervous (haven't worked for 14 years due to various circumstances) but I'm looking forward to it😆

  • How long did it take to settle?

  • Yes, 200mg twice a day with meals. I take the leflunomide at night. I also take 150mg of zantac twice a day.

  • Hi, I'm the same as Rena I cannot take Quinoric so the doctor wrote it in my notes & I get another brand. I've been on hydroxy for 4yrs now, I started on one a day for two wks I think. Now I take two a day, one in the morning & one in the evening & always with food. I felt slightly nauseous for the first month & had a slight rash. My skin is also sensitive to the sun since I've taking them. Were you told to get your eyes checked & again every 9-12 months whilst taking them. Good with your course

  • LUCK ^

  • Thank you😃I'd had a recent eye test, so had to take a letter from my optician to prove my retinas were okay, and yes, I have been told to have eye checks every 9-12 months. I'm on a generic of hydroxy - I wonder if taking the branded version would make a difference?

  • I take hydroxychoroquine sulfate film coated tablets. I had to ask my GP to write it on the prescription, apparently these are more expensive so the pharmacy will not give them to you without the doctors permission. Hope this helps

  • Thanks caza. I'm on the film coated ones already. It's so frustrating.

  • I had headaches and diarrhoea with hydroxychloroquine. I stopped taking it when I went on a course and then started it again after so I know for sure it was the hydroxychloroquine. After 3 months of side effects I gave up. There's usually another DMARD to try 😊. Hopefully it will subside for you xXx

  • Hydroxychloroquine can cause an upset tum, it's a common side effect so it could be the longer you're taking it there's a build up effect. Trouble is you've other things coming up so it could be nervous tum, or even the two both making your tum particularly sensitive. Plus, as Jacki08 has said, there's some virulent bugs going around, stomach flu round here & others, it's the time of year for them so be vigilant, be super careful with hand washing & avoid anyone sneezing without covering their mouths (seems to many doing that, where did they learn that was acceptable?!). I take a wide berth of people who are coughing too, dud you know you can catch many things through your eyes?!

    Try taking you HCQ after food or with a glass of milk, that can help ease upset tum. Also if you take omeprazole or another ppi don't take the two together, take HCQ either 4 hours before or 4 hours after.

    Pleased to hear you've had a pre treatment eye exam. I have heard that some are more sensitive to generic HCQ. I was prescribed Dolquine enteric coated 400mg daily, I split the dose between morning & evening & was generally ok except for light sensitivity which in turn caused bad headaches. Wearing sunglasses helped, no biggie because I was living in a sunny country where I blended in! I eventually came off it because it stopped working but it worked well the first 9 months or so, it was my first DMARD.

    I hope your tum troubles ease off soon & good luck with your new job, I hope you enjoy it.

  • Not intending to nit pick or be awkward, but milk is the one food above all NOT to take with an upset stomach. If there is an infection present, it will live on the milk and can be quite dangerous.

  • Maybe Zentiva need informing they should add a codecil then? My recommendation is listed under Taking this medicine

    Swallow the tablets whole with a meal or a glass of milk. Do not crush or chew your tablets.

    I suppose it depends on what's causing the upset stomach as well.

    Also included

    Tell your doctor or pharmacist if any of the following side effects get serious or lasts longer than a few days:

    Very common (affects more than 1 in 10 people)

    Stomach pain

    Feeling sick

  • That advice is for when you are taking it, probably to protect the stomach. Once you have developed an upset stomach, if an infection is suspected, milk is the wrong thing to take as the infection will feed on it. I would not have mentioned it but it can be quite dangerous. Milk does protect the stomach otherwise. A better test is alcohol. If there is pain after drinking alcohol, it is a clear indication of an ulcer and too much acid.

    As regards their "tell your doctor", it is a fair warning but it is almost impossible to access a doctor every time you get a symptom. The specialist or consultant is not really concerned about side effects and will not have the time to listen. The GP is also too busy. It is a case of doing what you think is best. I certainly would not continue with a drug which continually caused an upset stomach, from my own experience.

  • I appreciate that, it's common sense I suppose & maybe should have taken into account she has an upset tum. it's not a concern to me personally any more because I've not take it since 2009 but my GP is easily accessible should I need her help. I have the option of a telephone consultation for her to determine if she needs to see me or if she can prescribe something for me without needing for me to go in, risk of picking up bugs in the waiting area. I can also ask to be added to her day list if there aren't any appintments that morning/afternoon. She makes time for those who have chronic illnesses. I've got a good un thankfully.

    Thank you for your advice.

  • It is very different where I live. It has always been pretty bad but in the past I have never needed GP appts so it did not matter. The only other time I tried to see the GP last year was when I was coughing up blood and had developed a severe respiratory infection. I would have thought that pretty serious but I had to sit in the waiting room for ages and then I saw a medical student. I was given a prescription via the student for an anti biotic but the infection turned out to be a virus.

    I had a couple of appts the year before, one regarding a rash on my feet which the consultant told me to get diagnosed as it seemed to be psoriasis. I just got short shrift there - told it was Athlete's foot and not to bother them (but it wasn't, as advised by chiropody practice). I could go on. Even the thought of trying to get advice re side effects seems insurmountable in all directions.

  • Could you not change your Surgery, the care & knowledge at your present one doesn't sound at all acceptable to me, certainly the direct opposite of mine. I guess you live in a highly populated area so it could mean travelling further afield if others in the area are similarly oversubscribed & understaffed. You can ask your local CCG for recommendations & inform them of your reasons, that's important if they're ever to help them with steps to improve.

  • Yes, and it was pretty bad.

    I took HCL earlier in the year for three weeks. I had to stop it then because I had a bad cold infection and was coughing up blood (with severe pain in upper back on one side also). During the three weeks I did not notice any stomach upset. I have a pre-existing viral infection which has never cleared up in years so it just made it worse. I also had a spot showing on the retina which was not there before but the optician could not be sure what it was.

    I tried it again in the hot weather. After two weeks, I started getting diarrhoea in the mornings. It was awkward at work because the loos were always being cleaned at that time. I switched to taking it in the evening with a full meal instead of with a light breakfast and that helped a bit but I still had it. I persevered because I felt on both occasions it was helping my shoulder (in fact, it was, along with other medication).

    I coped with the diarrhoea though it steadily got worse and it was a relief to come off the HCL. I also had quite severe belly ache which lasted for hours and was relieved a bit by eating so I was nibbling all day. There was no nausea or vomiting. Anyway, the diarrhoea and the pain got worse. (I've had bleeding for years but this is due to thrush.)

    When I finally saw the GP, she went into a panic and did an urgent cancer referral. I thought it was a stomach ulcer, particularly as I tested positive in September for h-pylori. She prescribed antibiotics and omeprazole (which reduces the stomach acid and allows the antibiotics to get at the h-pylori) but only after she had done her own tests for it, causing another delay. This helped quite a lot with both the pain and diarrhoea. When I came off it, the pain got a bit worse again but the diarrhoea continued to improve. Both are better than they were but things are still not right. The hospital wanted to do a gastroscopy and colonoscopy urgently and said at this stage they can't guess (ie if I had been seen earlier, I could have tried something out first). I've had it for six months now, with some incidents (after dinner when I had not eaten all day) in the street. It is not like diarrhoea from gastro enteritis where you run to the loo all day but there is not much of it.

    From the above rigmarole, my suggestion would be to see the GP asap. However, you need to ascertain whether it is the HCL and the best way to do this, I think, would be to stop it and see if there is any difference, especially as you have to work. If it is left, you will probably be in the same boat as I am and be faced with horrible investigations. I haven't decided yet to go ahead with these. I am quite sure I have an ulcer caused by both the HCL and the h-pylori. To avoid an ulcer, a drug to reduce the stomach acid such as omeprazole, is prescribed though I don't know the indicators but the hospital thought I should have been taking it along with the HCL.

    With regard to wind, this is in the evenings when the stomach/bowel is full, not during the day. You also get diarrhoea and wind with severe bowel thrush. It is easy to tell if this is the cause by taking a probiotic. I find the strongest are by Biocare - Replete is a 7-day course (containing a six-month dose) and after one day, everything will be completely normal if thrush is the cause. I've been taking oregano oil with probiotics for two weeks now as Replete was out of stock.

    You can feel very unwell (and dizzy!) with bowel thrush.

    I've had a further eye test and the retina spot is no worse. I was only taking a low dose. I do think that an older person just can't tolerate these drugs. You do not say how old you are but I am now 68. I also had diarrhoea and pain with Naproxen - which did not even work.

  • Seems to me that best person to answer this is your Dr who prescribed the drug. When I started Hydroxychloroquine it was 200 mg a day and when I saw my consultant 6 month later increased to 200mg 2 x a day. Yes there can be side effects, but for each person it can be different. Any problems should always be reported back to prescribing Dr. Keep a Diary of the side effects, it may be that other problems are happening at the same time and yes it is good to ask people on this forum regarding their own experiences but the decision has to be the one who prescribed it. By having a diary of symptoms enables the Dr to make decisions for you and your well being, therefore they need to be kept in the loop.

    Having chat to a dispensing Chemist means them looking up side effects in a book and seeing if they match your problems. However they can't prescribe you anything other than say stop taking the medication and see if there is any improvement.

    That is really the decision your prescribing Dr needs to hear and make for you. It appears from a lot of comments here that people are agreeing that 400 mgs is a high starting dose, and that needs to be correctly checked with prescribing DR. I do hope that it resolves quickly and you are feeling much better soon.

    Do check your prescription label and make sure that you are taking what it says, sometimes you can misread them as there is too much information on them.

    If you have received a letter about what is happening from your Consultant, do read that to check for accurate information. If you don't have one ring your GP surgery explain to staff what is happening and ask if they have received a letter from the consultant and if the dose you are taking is correct.

    IF none of this works, you have a right to contact your Consultant's secretary and explain what is happening and ask the Secretary to speak to the consultant about it. They should contact you with an answer..

    Stopping the medication - it is important that you let the prescribing Doctor know if that is what you decide to do.

    Do hope you get this sorted quickly

  • The problem is that the prescribing doctor will be the consultant and there is no direct access. I told mine about the problem in November at my six month appt and he wrote to my GP about it. I had been trying to get a GP appt since September and had even taken in the private screening results to the surgery reception - to be told there were no appts and diarrhoea is a minor symptom that I should go to the pharmacy about - at that point I had had it, along with severe pain, for over two months. In fact, diarrhoea, along with thrush, Athlete's foot and a plethora of maladies are listed on the website as conditions not to bother the GP about.

    The poor woman has come on here purely, I suspect, because she can get nowhere with her various medical contacts. I would certainly not recommend continuing with a drug that causes such side effects because they can be more dangerous than the condition the drugs are trying to heal, eg a stomach ulcer where h-pylori is present could become cancerous.

  • My prescription was posted to me directly from my consultant.

  • I'd just like to thank all of you who have replied to me over the last couple of days. You have been very helpful, and for that I am grateful. I am only going to take 200mg today, as I feel very weak and yucky, and tomorrow I will ring my rheumatology nurse, who can contact my consultant.

  • Good luck, having the rheumy nurse supporting you will be good

  • Hi I started Hydroxychloroquine 2 months ago and the first 3 weeks were quite bad for rushing to the loo but after that it has settled quite a lot so hopefully thing's settle for you too.

  • Thank you. I'm hoping it will settle, as I have seen an improvement with my hands already. The side effects wouldn't be an issue if it weren't for the fact of me starting work tomorrow. The annoying thing is that I made the phone call to my rheumy nurse at the beginning of December in the hope that I would be on the tabs before Christmas. I didn't get my education appointment until 28th December, and then the prescription took over a week to arrive.

  • I had nausea with all these meds, seems to be allergies to them. Im.on enbril..side effects worsened for me as mounths went buy. See if yoir allergic to them. Or had stomach flu

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