Hi, my new dermatologist has said I have discoid Lupus as well as systemic and will write to my renal transplant consultant to ask if I can be put on hydroxychloroquine. I'm already on prednisolone steroids, mycophenalte mofetil and Prograf/Tacrolimus for immune suppression plus other meds for other problems. Can anyone tell me what to expect with this med please and what to look out for? Thank you.

9 Replies

  • I take a 200mg tablet of Hydroxy every evening with food. I have SLE and take this med as it is suppose to reduce the likly hood of a flare. seems to work for me with no obvious side effects. The brand I currently take is "Quinoric", hope this helps best wishes Eddie

  • Thanks Eddie. Seems like I've no need to worry about rattling a little more! ☺

  • I had a renal transplant in 2014. I was first diagnosed with lupus nearly 40 years ago. I last had a flare 10 years ago. I have been taking hydroxychloroquine for a year and have much improved joints as a result. The drug also has benefits for those that have heart issues. I have annual eye checks. In my case the drug has been of benefit. Hope that helps.

  • Thanks, sounds promising! How's the transplant going for you? X

  • Transplant has transformed my life. Now realised how much I was struggling.

    All the very best

  • I have been taking Hydroxychloroquine with Methotrexate for SLE, for 16 months and there are no adverse side effects with the Hydroxychloroquine. However, it is a very bitter tablet to take so needs to be swallowed very quickly ( not surprising as its made with quinine!). I take 2 tablets a day, morning and evening.

  • Thanks for the warning 're taste!. Do you feel any better for taking the med?

  • Yes MandaM, The medication combination I am taking has broken up the frequency of the flares and reduced their intensity but it's done little to reduce the constant fatigue!

    I am still unable to walk more than a few metres without having to stop for a blt which, considering 6 years ago I was an avid hill walker, has restricted my walking to the use of a mobility scooter on any lengthy walks but it's a huge help!

    What effect the Hydroxychloroquine has on its own I cannot say but it certainly does not seem to have any adverse side effects, which is more than I can say for the Methotrexate!

  • Hi,

    I've only been taking hydroxi for a few months now. For first two months I was taking two 200g tablets a day. They were of the Quinoric brand and I had no side effects. I then was prescribed a different brand called Zentiva, since taking these I've started getting regular headaches and nausea throughout the day. I'm not sure if the change of brand has caused the side effects or the fact that I take only 1 tablet a day now.

    But overall, my flares are reduced even though my rheumy said it takes a while for Hydroxi to get into ones system and begin to work.

    I stopped taking my meds for a week once and then had all the aches and pains return. So I wouldn't think about missing them now despite the headaches and nausea.

    Hope this is of some help.

You may also like...