Hydroxychloroquine Side Effects?

Hi all- sorry I haven't posted in ages. So I've had a 100% official

Diagnosis now- Anti CCP Postive Rheumatoid Arthritis.

Methotrexate wasn't working so well and making me sick so now I'm on the injections. It did control things a bit, but didn't put me in remission as the doctor hoped... Rheumy has added hydroxychloroquine with a view to starting Sulf as well soon.

A week after starting Hydroxy, my RA got worse! I was in pain in all the joints that had hurt pre- MTX and also my hips, back and neck were sore! I rang the rheumy nurses and they said I should come off it for two weeks and see if I improve and then go back on it to see if I get worse and then we will know it's the drug not the disease.

Anyone else experienced this?

Thanks guys :)

In addition to all this, I'm off work this week with a terrible sore throat and doctor is worried about my white cells etc- had a blood test yesterday and been told to lay off MTX for this week!

Life is on hold for me and it is getting me down :(

7 Replies

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  • Hiya Amanda! I'd wondered how you were getting on & now know not too well. Sorry to hear that you now have full blown RD, though at least it's somewhat easier to treat having a definitive diagnosis, if RD is ever easy!

    I started on DMARDs the other way round, HCQ for about a year then MTX in an effort to control me. It's possible that your experience of worsening RD symptoms were like mine & were due to the HCQ not having time to kick in, your body thinking you were just still only on MTX. It can take as long as MTX can before having full effect but my Consultant asked me to stay on it to let it build up, after requesting more bloods so there was continuation rather than stopping taking it. Unfortunately it didn't make much difference so HCQ was withdrawn & just remained on MTX, along with NSAIDs etc, & that seemed to work so it may be the same but with HCQ will apply to you too. I still inject MTX 4 years later & now considered controlled.

    It would be so much easier if we all "just" got RD, if we have to have it at all, & the same protocol worked for us all but it's as different as each of us so we often have to try different meds to try to get us controlled.

    I hope your wbc counts level out & you can get back on track soon. x

  • Hey! Thanks for your reply. It could well be the case, although my symptoms have got a bit better since I stopped them. Turns out that my sore throat is strep bacterial infection! So I am on antibiotics now too. Yay! haha...

    I will start the HCQ again next week I think and see what happens!

    Hope you're OK. I just feel like this is never gonna be under control so I can plan my life and live instead of just surviving, if you know what I mean. Every day is a struggle at the moment!

    A x

  • I do, but I got there & hope you do too. It's just not a quick fix & sometimes we need to kiss a lot of frogs before we find our Prince. I hope the antibiotics sort your throat out quickly & you can get back to "normality"! x

  • Thanks so much! I am still smiling through it all :) x

  • I know you're not alone and do keep smiling.

  • Hello When I started hydrox 1 tablet was ok, then two a day and I had headaches and eyesight bit odd, so reduced back to one tablet for a while, now back on two, head and eyes ok. but not sure what they do, as I am on metho, and sulfa too, and still in pain, may have to try different drug? Keep smiling?!

  • Hi Amanda i have just posted for info about Hydroxy i to find i have pains, mine are in my side and dull aches in my chest, and itchy skin. I am going to speak to my Rheumy nurse in the morning, i was going to leave it til next week when i have an injection in my knee, but i will ring her tomorrow. Hope you get sorted soon. take care Ladybird xx

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