Starting medication 😬

Starting my first day on Hydroxychloroquine tomorrow. Got mixed feelings a bit nervous but got to try and think positive. Gonna just close my eyes take it and get on with it. Fingers and toes crossed I'm fine on it. The thought of medication for life is not great, I take thyroxine but this is a bit of bigger deal. Haven't read much on side effects in case I imagine I have them!! Just hope all goes well 🤞

22 Replies

  • I did the same with the side effects! I started on sulfasalazine a week and a half ago. I told the nurse only to tell me the things where I needed to immediately stop taking it!

  • Yeah, I know the worst but that's all I wanted to know too. Hope u r doing ok😀

  • Hello kibeth,

    I have understood that HCQS is the RA med with the least adverse effects. Hope it will help together with thyroxine. Ra and hypothyroidism often go hand in hand, treating both gives better results😊

  • Hi, new to everything so I'm not very clued up on the medications. Didn't know about a link to thyroid either. Thanks for info 😀

  • HelloKibeth

    I've been on HXQ for 3 years now and I didn't have any problems. The iportant

  • Oops sorry, RA fingers! I meant to say that you should get your eyes tested before starting and regularly each year. That was the advice my Rheumatologist gave me. X

  • Yeah was told that too, fingers crossed so will I x

  • I've been on hydroxy for two years now and I'm ok on it. But you have to find a brand you can tolerate. I take zentiva.

  • I will just be patient and wait and see 😀

  • Hydroxychloroquine was my first DMARD so I hope you respond as well as I did. My dose was 200mg twice daily so I took one in the morning & the other in the evening, with food. I think you're wise not to have read much, in my opinion you need to know just enough to be informed but not so much you scare yourself silly. Do remember though to read your Patient Information Leaflet, you do need to have reliable info on any side effects which need reporting but don't dwell on them!

    I hope all goes well for you too. Have you already had your eyes tested? It's recommended you do before you start HCQ. Mine were tested at the diagnostic clinic the same day I was diagnosed & before my meds were prescribed.

  • I'm on 200mg twice a day too. Will have a read later, sound stupid but is that the leaflet in the box or what consultant gave me? I wear glasses so I have had them tested but not sure when, I was told to go once a year. Just don't want any tummy probs, I put in my first post I've had some anxiety problems since being diagnosed which is getting better slowly but it caused no appetite which lead to stomach issues. Just need to feel normal again 😀

  • Yes, that's right, the leaflet which comes with your meds, thought will also be helpful to read the leaflet your Rheumy gave you as well.

    It's recommended that you should have an ophthalmological examination before initiating treatment with HCQ & at least every year thereafter. Do remember to make your ophthalmologist aware you're taking HCQ.

    Do check the ones you've been prescribed enteric cited ones, it should say on the box EC & also on the tablets. If you've not been prescribed EC tablets request you are. You could also request you're prescribed a Proton Pump Inhibitor (PPI) such as omeprazole, though this shouldn't be taken at the same time you take your HCQ. It's advised you leave 4 hours though I admit I took mine together. Try not dwell on things, you're diagnosed & now starting treatment, it's a big thing to come to terms with but we're always here to talk through anything you're bothered about.

  • Wasn't told to go before starting!! Better go to opticians tomorrow! Can't see EC any where and what is a PPI?? Sorry absolutely clueless 🙈

  • It's best to have a baseline test so you know you're OK to start HCQ & also so it can be compared to your that test if you have any changes at your annual one. A PPI is a stomach protector, an antacid, prescribed by your GP.

    Don't worry, it's a huge learning curve in the early weeks, months, years! You never stop learning, it's the disease that never stops giving lol. 😒

  • Thank you, I will go in the morning cus I started them today!! And will get gp appointment. Thank you again😀

  • I've been on Hydroxychloroquine since I was diagnosed in 2001 and I haven't had any side effects that I've noticed. They do say to get your eyes checked regularly with a good Optician, which I do.

    I've had various drug changes and the only one that I had problems with was Arava - Leflunomide. I didn't like the idea of it from day 1, and it actually did more harm than good - nothing long term but even higher blood pressure that I've now thankfully got back to normal.

    It will take a while to kick in as most RA drugs do so try to keep calm but report anything you are concerned about to Rheumatology. We are all different and this drug may not suit you. but there are others

    Wishing you all the best


  • Thanks, trying not to think that I've taken it and carry on but then I know I need to notice anything different!


  • I know, it's scary, but you are not alone - there is great advise and support here and on the helpline if you need it

    Take Care and hope you just feel better, with no negatives - it does happen. If not, there are option


  • Thanks, should I keep on taking them cus I haven't had my eyes checked or just get them done asap?

  • Eye problems are rare, and take time to develop so I wouldn't worry too much. I think I had an eye test about 3 or 4 months after I started on hydroxy. Just get a baseline done as soon as you can and make sure you tell the optician that you are on hydroxy so they check retina properly.

  • Thanks, I wasn't told to go but make sure they r checked once a year. Started to panic, only been one day and didn't want to stop already. Felt like i needed a bit of courage before taking the first one this morning. I will book an appointment tomorrow. Thanks again 😀

  • We've all been there, and been scared. Try to look at the pills positively as the things that are going to take the pain away.

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