I’m looking for some advice on whether anyone else has had awful stomach pains, sickness headaches & nausea on 400mg hydroxy. I started taking it 3 1/2 weeks ago and the first week I was fine and then the headaches started. I came off it on Tuesday as the stomach pains started on Sunday and have just settled today. I’ve been sick today and the nausea continues Ive acid on my stomach which I take meds for and gaviscon. I spoke to the nurse and she said hydroxy was quite a gentle med but I shouldn’t feel worse on it than I did before taking it. I don’t know if dropping it to 200mg will help or whether I should try something else or not bother with any med at all. I’ve got SLE. Hats off to all of you who can tolerate it.
Thanks hope you’re all have a great Christmas🎄
Written by
CindersSue
To view profiles and participate in discussions please or .
I started at 200mg per day. I had a rash all over a few weeks in.
I worked with my rheumatologist. He asked me stop until symptoms went, I then went back and 'rechallenged' at half the dose, taking tablets every other day. Then after that on full dose, and it worked.
After initial issues, all was fine.
Later I had too up dose to 300mg per day.
Now I also take another antimalarial in combination with Hydroxychloroquine,called Mepacrine.
Stomach wise I have to be careful what I eat with Hydroxychloroquine. If I eat salad with it does tend to go straight through me and cause everything too.
I have had more headaches since Covid infection, now nearly five years ago. I started hydroxychloroquine since then, and that did not associate with the incidence.
hey Cinder Sue I take 400 mg a day I never really had any issues with it other than if I don’t take it I know within hours I really hope you get it sorted perhaps you need something stronger than gaviscon to combat the acid and sickness I take domepiridone and lansoprazole as I have gerd and slow transit and oesophagus spasms could be worth asking for something to settle the symptoms you are getting to enable you to tolerate it xxx
Hi Jaq1971, thank so much for your informative reply. I’m taking Lansoprazole as well as the gaviscon. I think it may be worth a phone call to the drs to see if they can give me something stronger than the gaviscon. I’ve been getting chest pains which my dr put down to angina they said that lupus can bring it on so they gave me a spray. I’m wondering if it’s gerd that causing the chest pains. I have Sjogrens as well and that makes me very dry as it affects my mouth and glands and hence no saliva so no protection down into my stomach so I’m constantly drinking water. Getting the help from people like you is fantastic . Thank you so much . xxx
Hi so sorry to hear that you're having problems with Hydroxychloroquine. I've been taking it for 5 years now and have found it helpful. Prior to taking 200mg/400mg alternate days I had regular painful swelling of my knees and hands that was debilitating and imobilising.Usually lasting about 4 days. I hardly ever get this now. Apparently the med can rarely cause toxicity to the retina. So it's important to ask for checkups. I have this at my local Eye Hospital's Retina eye clinic. Fortunately I seem to tolerate the above dosage. It could be worthwhile talking to your clinician about trying a lower dosage. Hope this helps and good luck.
Hello CindersSue, I have been on Hydroxychloroquine for many years, 200 a day for 5 days, Methotrexate once a week, one rest day, with no problems at all. My local Rheumatologist upped it to 400 a day, again no noticeable side affects, same regime as he felt my condition was deteriorating, but on a visit to Bath Scleroderma Unit a couple of years ago was told I was taking too much for my weight and it was reduced back down to 200 but with an increase in my Methotrexate. I am now taking 200 daily but have noticed a deterioration in the arthritis side of my condition. I am interested in that Striated Caracara is taking Mepacrine which I have not heard of, will ask my Rheumatologist about this next time I see him. I too have to be careful with some salads and green vegetables but think that is because I have had two operations for Colon cancer.
Sorry to hear you are having these issues. I started taking 400mg last July - 1st 2-3 weeks I had stomach cramps and diarrhoea and then it passed - no issues at all with it since. I hope you get to some answers
Hi Ruablue thank you so much for replying. I’m going to give it another few days then contact the drs to see if they can help. It seems some get more help from their rheumatologist than others to. I would love to try them again on a much lower dose and gradually work up to 400mg. Can I ask if you are starting to feel better after taking Hydroxychloroquine? xxx
hi Cinders - Sadly, I’ve recently had to change my local rheumatologist unfortunately as I found him to be unfit for my needs. One of the best pieces of advice I got on here is that we really have to be our own health champions and advocate for ourselves medically - so I totally understand what you mean re: rheumatologist support.
Happy to answer any question you have, if it will help. I have definitely found my joint and muscle pain is less with the hydroxy - it took about 3 months to get to that point - it has not gone away but has definitely eased - my hands, (which were quite painful) wrists, shoulders and knees specifically.
All my other symptoms are stable but I am on a cocktail of meds at the moment and putting that stability down to all of them!
I hope that helps - let me know if you need to know anything else. 😊
Hi Ruablue you are so right about knowing our own bodies. I waited 2 months to get my med after being diagnosed, I was keen to try it and hoped I would be ok on it. I desperately want to feel better but not at this cost to my body. There is something clearly wrong with a med that puts your body through this. In its group this might be one of the gentler ones but as a stand alone ned it’s harsh for some people. So pleased you’ve got the right mix . Have a lovely Christmas xx
I was on Hydroxichloraquine years ago when my Systemic sclerosis was misdiagnosed as RA and I couldn’t manage higher doses of methotrexate due to liver issues. Initially I had a skin reaction so my GP told me not to take on my methotrexate days. Then I started feeling sick but never knew if it was the MTX or Hydroxy. Finally I was taken off MTX and put back on 400mg Hydroxichloraquine and it worked brilliantly for joint pain for about another six months. But my face slowly started swelling with painful hives so one day I just stopped and the rash disappeared. My rheumatologist wasn’t too pleased that I’d stopped rather than halved dose but when I told my GP he indignantly replied that slow anaphylaxis is a thing and you can’t keep taking the source just at lower dose if you’re allergic to it! Maybe different if it’s nausea or sickness but once my body rejects a drug it just keeps on rejecting it.
Hi OldTed60, I feel exactly the same about some medication and I feel nauseous and have stomach pains right now and have done for the past 10days. It seems I get a build up of a drug and my body either accepts it or it doesn’t. I ended up in urgent care on Sunday evening and the dr was checking me for peritonitis. She was very thorough with blood tests urine sample etc. All blood tests were clear and she told me it was down to the Hydroxychloroquine and to come off it and not to go back on it again. She also said unfortunately it would take weeks to get out of my system. I don’t really want to go down the path of taking this type of medication. I’ll see what the rheumatologist says when I see her. A lot of people can take this drug and their bodies accept it which is great, I can’t take antibiotics as I’m ill off those. I hope you’re back on track and have found something that suits you and is working for you. xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
side of hands have a blue tinge
Iloprost - side effects
Nifedipine side effects/fluoxetine 
