Hydroxy side effects

Hello

I have just returned from holiday so have not been on the blog for a couple of weeks. I have been taking Hydroxy for the last 5 weeks but I am feeling dreadful with it. I feel constantly nauseus and have a headache, i am taking the dosage at the correct times ie with food or after food but still feel the same.

Also don't know whether it is having any effect as still suffering from pain in fingers, hands, back and side of right knee and ankles. It is not as severe as it was a few weeks ago but i have also had a steriod injection.

The other strange thing is that i have no strength in my hands and wonder is this common with of RA or it is side effect of Hydroxy. I cannot take bottle tops off or at times open packets.

Sorry to sound so dramatic but feel like as soon as some of the pain subsides, something else happens. Will i ever be pain free and feel normal when they get the medication right?.

Deb

15 Replies

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  • Hi Debbie, Hope you had a lovely holiday. I had to come off Hydroxy because it caused spots on the retina and my optician was worried about it to the extent she referred me to the eye surgeon at the hospital. He did tell me that once I came off it, the spots would begin to go which they did.

    With RA it is difficult to open cans, packets etc. I have an electric can opener and use a pair of scissors to open packets. The no strength in the hands is part of the effect of RA. and affects us all to a greater or lesser extent.

    Suggest you have a word with your GP or Rheumy nurse/consultant about the side effects. It doesn't suit everyone and in my case had absolutely no effect on the RA and I was taken off it after 6 months. Also ask about other medication to control pain and inflammation.

    Once the medication is right, you will feel better and relatively pain free for a lot of the time but flare ups do occur and have to be dealt with at the time. I think we all suffer from these from time to time and if mine are bad, its back to the old steroid injection again which settles it all down for a couple of months.

    You don't say what other meds you are on. The tendency appears to be to try this type of medication first before considering going onto anti tnf or something similar. Are you on MTX? If so, speak to your consultant about the dosage. If not, again speak to him/her (not being sexist here!) about going on it.

    I think we all feel that if we get one thing sorted out, something else rears up.

    There are some very good booklets about RA on the NRAS website. worth a look.

    Love LavendarLady x

  • Hi. I am also taking Arcoxia daily with the Hydroxy and Omeprazole for acid caused by arcoxia. Along with steriod injection I am starting to feel like a junkie. Will there be a time when I won't need to take medication or is this now for life. Not asked rheumy team this question yet.

  • I posted a question on this drug, (probably while you were away), as it was proposed to me that I might start taking it by my Rheumatologist. The replies have made me think twice, and what you're unfortunately experiencing has made me sure - I don't want to take it! That's of no help to you, but if you trawl back thru questions and find my one - something like, "How do people on Hydroxychloroquine get on with it?" - you'll see lots of replies which will hopefully be helpful to you.

  • Hi Debbie

    If the nausea and headaches are something which have been happening only since you started on the Hydroxy, I think you should speak to your GP or rheummy team straight away. Hydroxy made me quite sick (no headaches) when I started to take it but the symptoms did ease off after a couple of weeks. I have a friend who couldn't toleratre this drug and was taken off it, so please do speak to a doctor soon.

    I found that I didn't notice a difference until I had been taking it for about 8 weeks, but we are all different and it may be longer for some, and less for others.

    Sadly RA is unpredictable and you maybe experiencing a flare up in your hands.

    Please don't despair - there will be meds out there which will not only suit you but help greatly with the fatigue and stiffness. It took a good long while for my meds to be sorted properly but we got there in the end! I now enjoy a good quality of life despite having replaced knees and hips.

    Take care

    Jean

  • Just checked and think mu question was on the Lupus section - hope you can find it!

  • Hi Debbie, hope you had a good holiday, I know you weren't feeling very well before you went away, so hope the rest as been good for you.

    Like jean said if these symptoms of nausea and headaches have been since you started the Hydroxy then this may be to blame. GP is the best one to speak to. This drug, like many others doesn't suit everyone and the side effects can be quite nasty.

    The weakness in the hands is all part of RA I'm afraid, you can get gadgets to help you. It is something you learn to accept and get used to over time.

    I would either ring my nurse/consultant and explain how you are feeling or see your GP.

    Take care

    mand xx

  • Of course mand is right about weakness in hands but it's not always inevitably a downwards slope. I can do things I couldn't five years ago. I had significant improvement after anti tnf cocktail stabilised

    So good luck

    X c

  • Hi cathie, yes I agree. If we can get onto the right regime of drugs it can help our RA considerably.

    It's quite amazing how much better you can start to feel, like getting your old life back sometimes.

    Take care cathie

    mand xx

  • Hi,

    I think Hydroxy is the same as plaquinil, I have been on this drug since the start of my RA 3 years ago, then methotrexate was added and then anti tnf. It is quite common to be on 2/3 DMARDS with RA. In addition, I believe studies have shown a better outcome when Mtx is continued with anti tnf. From my point of view, this has all seemed to work for me, and the progress of my RA has been slowed for the moment. My Consultant said the immune system is very clever, so to use combination Dmards is best for confusing it , that is in laymans terms I suppose.

    I have had no ill effects from the plaquinil. 200 mg twice a day for 3 years. Obviously, regular eyetests are essential.

    I doubt I will ever be on no RA drugs and it does take alot of getting used to pills, I only occasionally now use anti inflamms or pain killers or omeprazine and I think my Consultant will eventually reduce the plaquinil. I once reduced from 20mg of MTX to 15 mg p/w and immed got sore joints :(

    You are on a winner if you can tolerate the meds and you are diagnosed early, even at that joint damage is swift for most peeps.

    Regards, Gina.

  • Good to read how much better you are feeling Gina!

    Joy

  • Hi Deb

    I've been on Hydroxychloroquine since March this year. (I was having acute inflammatory attacks in hands, wrists, and sometimes other joints every two weeks which went away a few hours after taking steroid tabs, mine was called Palindromic Rheumatism so symptoms will vary).

    It is known that Hydrox takes 8 - 12 weeks to work.

    My attacks stopped a month later (last one was in April) so rather than go on stronger DMARDs it may be worth persevering but obviously you need to consult your GP/Rheumatologist.

    I've not suffered with the same symptoms as you but have had skin rashes which seem to be subsiding too, so it may be that your body wil overcome the side effects? (I am only guessing and telling you what I have experienced).

    My Rheumatologist started me on Hydrox as its the mildest of the DMARDs so perhaps try to be patient and give it a bit longer - both for results and relief from side-effects.

    Hope this helps and I wish you success.

  • My RA nurse decided to add hydroxychloroquine to my list of meds in June this year, even though I told her that it had not agreed with me 20 or so years ago when I first tried this drug! Nevertheless I took it, and remembered why I had stopped! Blurred vision and unable to focus was the main problem, blinding headaches, dizziness, nausea and skin rashes.

    She had prescribed it because although it is not known to be that effective on its own, combined with methotrexate each drug makes each other more effective, apparently, but I have stopped taking it.

  • I've been on MTX, Plaquinil (sp) combo since June 1st - Consultant recently added Fluro sumink or other to the mix :D.

    You didnt mention whether you were on a combination or just the Hydro? As I did have headaches and Nausea for a month or two initially but those sideeffects have since stopped. Yay!!

    I drop things ALL THE TIME so I guess I have the hand weakness :P

    Dont have any gadgets mentioned (but will invest in those soon no doubt) but do have a best friend (who im staying with whilst working in another city) who is always happy to open every and anything I wave under her nose LOL.

    I hope you begin to feel better soon!!

    Joy

  • Hi all

    I contacted my Rheumy nurse late yesterday to advise of my problems taking Hydroxy and she called me back in the last half hour and told me to stop taking this immediately. she has not offered me anything else as I have an appt on 5th October at Rheumy clinic. I will just have to grin and bear it until then.

    Anyway thanks for all the comments support i have been offered following my issue i raised yesterday. I am sure I will eventually be on the right road with meds. ( I hope)

    Deb

  • Hi, I have recently been diagnosed and have also been put on plaquenil. In the first week I experienced nausea and I actually had diarrhoea. These symptoms on last for four days and eventually passed. I have taken the drug now for 30 days and I am still getting flares (on diagnosis the disease only manifest itself in my hands severely, knees and ankles). I still experience severe pain in my hands, especially wrists and knuckles. I have even developed a nodule on my right hand (predominate side), although I had this before I was put onto plaquenil. My joints in particular my hands (main area that is affected) are still swollen. I was not given any other DMARDS, at the time as I am not a lover of the needle.

    I've been back to my GP and have had my pain relief increased I now take salpadols? and I am now taking Arcoxia 90mg almost daily to try and control the pain I am still experiencing. I take Arcoxia 120mg when I have a flare for up to 8 days.

    When I next see my consultant in november I will be put onto methotrexate. I can't wait as although I hate needles and I will have to have bloods every 3 wks, I am now fed up of being in almost constant pain. I wake up almost every nite about 3 oclock because I am in severe pain and need to dose up. The disease for me is still not controlled and I have now started to experience joint pain in elbow and right shoulder, so its spreading. I wished I took the methotrexate when it was offered, but I will get it next month. Just need to hold on.

    I am hoping that the mtx will boost the hydrox and by my next appointment, the hydrox will start to work!!!

    I also suffer from wrist weakness and cannot open things, carry stuff and at present I am also not driving. I have to use the hand splints when I am at work. I hope that helps and yes you are not alone!!!!!

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