New to UCTD

[redmaggie]

Hello there, can anyone advise on hydroxychloroquine? I've recently been diagnosed with UCTD at a London hospital (I already have erythromelalgia and reynauds, and a bunch of other symptoms). I've been taking HCQ 200mg for the past 6 weeks but it's now giving me awful gut pains and overactive bowels. I'm already underweight and it's not a good look. I've stopped to try and rest my tummy, and may try HCQ again. Does anyone have any tips on what to do about gut problems with this drug? thanks, in anticipation!

[Lizard28]

I’ve been on hydroxy for many years, I have MCTD and now lupus, at the beginning it did upset my tummy and felt nauseas, I had to cut it down and only took one with meals then miss one, it prob took longer to get in my system, I was taking 400mg at the beginning, eventually it settled down and now I take one in morning after breakfast and one after my dinner at night. If I take it without eating it does upset my tummy.

[redmaggie in reply to Lizard28]

Thanks! When I restart I'll try one every other day for a while. x

[Hamptons]

I always take mine after dinner in the evening. Always take it after food.

[Krazykat26]

When I first started hydroxy 5yrs ago it caused some heartburn n tummy upset. I remedied that by taking it with a glass of milk rather than water.It could also be the brand of hydroxy that you're taking. Some people can't tolerate certain brands coz of the fillers that are used in the tablets. So my advice would be to try taking it with milk (I use goats milk) or maybe request another brand especially if you're taking Bristol brand..Zentiva is the easiest on the tummy I find but u may have to ask your doctor to specify Zentiva only on your prescriptions.

I hope you find a solution soon 🤗💜🌈😽😽xx

[redmaggie in reply to Krazykat26]

Thank you for your replies! I was already taking the tablet with my evening meal, and I only take the Zentiva brand, because it is coated. I'm gulping down kefir to see if that helps settle things down. So maybe there is not much else I can do except take a rest and try again later. xx

[ZA31]

Hi,

I would also get some nausea, but my rheumy told me to have 400mg at night after food but before bed.

This seems to have helped.

Hope you feel better xx

[Alida_Bennett Partner LUPUS UK]

Hi Redmaggie

I am sorry you are suffering side effects from your treatment, but we would always advise that you speak to your prescribing doctor before making any changes.

I attach below a link to our blog article regarding side effects, which I hope you will find helpful.

lupusuk.org.uk/coping-with-...

Kind regards

Alida