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Hydroxychloroquine

towyviewtowyview Posts: 25
edited 8. May 2011, 17:09 in Living with Arthritis archive
Hi all,
Hope you are all enjoying the bank holidays and of course the wedding.

Just had my appointment with the Rheumy which was brought forward due to swelling and pain in left knee. After drawing out excess fluid and giving me a steroid injection I have had some relief.
Having been on Enbrel for 6 years with great success, I found that it was possibly losing it`s effectiveness. I pleaded with them not to add methotrexate as I find it difficult to tolerate. Have enough problems without the nausea etc that it causes. Along with the Enbrel I have now been prescribed Hydroxychloroquine (I think it also has another name). I would be grateful if someone could tell me something about it, side effects etc. before I start it. My Rheum nurse tells me there are no side effects, I find that hard to believe. Hope someone can help me.

Enjoy the sunshine while it lasts!!

Dorothy

Comments

  • dreamdaisydreamdaisy Posts: 31,556 ✭✭✭
    edited 30. Nov -1, 00:00
    Hydroxy is partaken of by quite a few on here - not me though, it's one I haven't tried. As with all these things none of us can say how it will or will not affect you side-effects wise: my impression - and it is only that - is that it is one of the 'milder' meds and most seem to cope OK with it. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi, I take hydroxy also known as Plaquenil. It is really important to have an eye test before starting and then annually to check no eye damage. In extremely rare cases it can cause toxicity to the eyes.

    I took mine of an evening after dinner to minimise side effects. Some people expereince nausea and upset stomach. I didn't but when the chemist gave me a different brand I got awful headaches. Now back on proper Plaquenil and no probs.

    I found it helped with the tiredness but wasn't enough for my joints. It takes at least 3 months, sometimes a year to gain the maximum benefit.

    I wish you well on it.
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Dorothy

    I took Hydroxy for a while, together with other meds (can' remember what else I was taking at the time) and I don't remember having any probs with side-effects.

    Really hope it helps you and that you can continue with the Enbrel. Like you, I have struggled with meth but, just fyi, my consultant indicated to me that even a meth dose as low as 7.5mg weekly might be enough to prevent an anti-tnf losing its effectiveness, or you becoming allergic to it.

    Hope you get on well with the Hydroxy Dorothy.

    Love Tillyxxx
  • tjc123tjc123 Posts: 139
    edited 30. Nov -1, 00:00
    :smile: Hi

    I too take Hydroxy & have done for about a year now.Im pleased to say Ive had no side affects. :smile:
  • breanebreane Posts: 392
    edited 30. Nov -1, 00:00
    Hi Dorothy,I've been taking Hydroxy for well over a year and have not had any problems with it.The yearly eye test is essential but I was told it's very rare to get any toxic build up in the eye from taking this drug.Hydroxy is one of the mildest Dmards so I wouldn't worry too much about taking it. Breane.x
  • cthornleycthornley Posts: 627
    edited 30. Nov -1, 00:00
    I took it for a bit and didn't get on with at all,
    I had terrible problems with D&V on it so much that I had to stop taking it or I would have wasted away.
    I was told that my reaction was rare and unusual and its generally a good milder drug thats taken in combination.
    Hope you get on with it
    Chrissie
  • madwestiemadwestie Posts: 383
    edited 30. Nov -1, 00:00
    Dorothy, I have been on Hydroxy for over 4 years now along with increasing doses of MTX and i have had no side effect from the hydroxy at all, I do take it in the evening after dinner so i have a full tummy. i have not had any special eye tests so you may get one but may not i actually found out last tyime i saw the rheumy that you should only be on a 400mg dose for about a month(at that time i had been on that dose for 4 years. :shock: ) the rheumy said is you eye sight ok and gave em a sheet to read and then said ok just take 200mg from now on.

    Hope you get on ok with it.

    Tracey
  • frogmortonfrogmorton Posts: 25,124 ✭✭
    edited 30. Nov -1, 00:00
    Hiya

    I take it too and am ok on it.

    At first l did get a dicky tummy but had to take it twice a day so took it smack bang in the middkle of the meals (lunch and tea) and so far been ok.

    Did have the eyes tested first as well.

    Worth a try for sure.

    Love

    Toni xx
    Love

    Toni xxx
  • julie47julie47 Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi dorothy

    I am on hydroxy too and I have been ok.......hope you are too

    Juliepf x
  • towyviewtowyview Posts: 25
    edited 30. Nov -1, 00:00
    Hi all,

    Thanks so much for all your advise. I haven`t started taking the new med yet as for some `political` reason my Rheumy has to write to my GP and then she will prescribe. What with the bank hol it will probably be the end of the week before I start to take hydro. I am a bit concerned about my eyes as my late mother had glaucoma and I already have a check for this as it is hereditary. I hope this new med doesn`t cause me any other eye problems.

    Dorothy
  • ironicironic Posts: 2,386
    edited 30. Nov -1, 00:00
    Hi Dorothy,
    I have been taking Hydro for about 18 mths with no side effects at all. I am on 400mg a day.
    It did take a long time before it made any difference to me but it did work in the end. Have a word with you optician they will be able to reassure you as they have had the experience of dealing with this drug.

    Good luck with it,
    Lv, Ix
  • capricacaprica Posts: 195
    edited 30. Nov -1, 00:00
    Hi, I've been on hydroxy on its own for almost 10 months with no problems at all. I take 400mg a day, usually after a meal or whenever is convenient really.

    I went for an eye exam before I started it and now am due for another one soon. Good luck with it, you should be fine!
  • frogmortonfrogmorton Posts: 25,124 ✭✭
    edited 30. Nov -1, 00:00
    Excuse me hijacking, but good to see you Caprica hope you are doing well?

    Love

    Toni xx

    Ps Dorothy - get to the opticians as soon as you can - l am pretty sure it's nothing like glaucoma.
    Love

    Toni xxx
  • capricacaprica Posts: 195
    edited 30. Nov -1, 00:00
    Hi Toni, I'm great thanks :) I've PMed you
  • valvalvalval Posts: 15,897
    edited 30. Nov -1, 00:00
    hi been on hy for over a year and had no side affects and helps great with joints even when stopped naproxen due to side affects just take ibuprophen or co codomal when go into flare good luck with it eat first and get eyes checked also it does take a while but felt a difference in blood (went from flat no energy to fizzing with energy blood not rest of me)
    val
  • Jo90Jo90 Posts: 68
    edited 30. Nov -1, 00:00
    Hi Dorothy
    New girl here ! I have been taking this for a year now (plus Etoricoxib) for seroneg and it has worked well. I have flagged it up with my optician, so that, no pun intended, we can keep an eye on any possible side effects ! I have had brief spells of queasiness (not serious, just a little icky) and some eczema on hands and feet (felt like lizard woman for a few weeks !) but, that also passed. In terms of comparing these minor side-effects to the rampaging illness, I have been SO much better off taking hydroxy.
    Hope you get on well with it too.
    Jo
  • janmar66janmar66 Posts: 5
    edited 30. Nov -1, 00:00
    I have been on hydroxychloroquine for almost a year and no side effects, had eye test before I started, just waiting for rheumatologist appointment as the one I had for 3/06/11 was cancelled by hospital other week.
    Tomorrow I am going to GP to get a steroid injection in my shoulder as it has been agony since well before xmas, some say its really painful some say its not, how did you get on with it?
  • lindalegslindalegs Posts: 5,317
    edited 30. Nov -1, 00:00
    janmar66 wrote:
    I have been on hydroxychloroquine for almost a year and no side effects, had eye test before I started, just waiting for rheumatologist appointment as the one I had for 3/06/11 was cancelled by hospital other week.
    Tomorrow I am going to GP to get a steroid injection in my shoulder as it has been agony since well before xmas, some say its really painful some say its not, how did you get on with it?

    Hi Jan and welcome to posting :grin:

    My rheumy's given me steroid shoulder injections and I didn't find them too bad ...though rheumy's are sometimes more practised at doing them than GPs. Even if you do find it hurts at least it should give you some relief in the long run.

    Hope it goes okay.
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • lindalegslindalegs Posts: 5,317
    edited 30. Nov -1, 00:00
    Hi Dorothy,

    I'm interested in all these replies as my Rheumy wants me to add Hydroxy to my cocktail after my forthcoming surgery. The eye side effect worries me as my Mum was almost blind with macular degeneration and my Dad's colour blind and only sees black, white and shades of grey. I'm going to speak to my optician to help me make the decision.

    Please let me know how you go on.
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • towyviewtowyview Posts: 25
    edited 30. Nov -1, 00:00
    Hi,

    I feel the same as you about the eye problem. The Rheumys words were - this drug is used for malaria and there are no side effects- can you believe that!! I haven`t started them yet but hope at least they help the pain, fingers crossed about the eyes. Will certainly tell optician about them, will probably get more info about side effects from her.

    Dorothy
  • starspanglestarspangle Posts: 37
    edited 30. Nov -1, 00:00
    Was prescribed this yesterday..thank goodness for this forum :)
    Waiting for the right moment to start them, just in case of the side effects.

    I have had serious digestive problems and I am thinking of just 1 per day for the first week.

    So lets hold hands Dorothy and jump together!
    S*
  • lindalegslindalegs Posts: 5,317
    edited 30. Nov -1, 00:00
    Saw my optician today and asked about the rare possibility of damage to the eye whilst taking Hydroxy.

    She reassured me that in the unlikely case of this happening it would effect the periphery of vision and happen gradually that's why we have an annual eye test so that it'll be picked up and the medication stopped.

    There is no risk of it causing colour blindness or macular degeneration.

    Just for interest in order to prevent macular degeneration she said to eat lots of dark green vegetables especially kale. Spinach soup for me tomorrow then!! :shock:
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • alarkraalarkra Posts: 213
    edited 30. Nov -1, 00:00
    Hi Towyview,

    I have been taking Hydroxy with mtx, sulpha and meloxicam. All I can say is that I was as high as a kite for the first month and a half but this was due to the extreme cocktail of meds I'm on. At first my eyesight appeared to deteriotate as I am short sighted so wear glasses/contacts and 3 months later my eyesight appeared to by rather poor even with glasses/contacts. The optician said that there was nothing he could do and was probably due to side effects to all the meds settling down in my body and that I was probably very fatigued as I had started working again so it was taking it's toll on my body. So I waited and made do with what I had...

    ... and most bizarrely, last month it became apparent that not only are my eyes better and back to what they should be, my sight has improved to the point that my glasses/lenses are at their optimum so I can see everything clearly and sharply with them without needing a lens change. Now, I'm not saying that the meds are responsible... but I'm not saying that they weren't either. Maybe because of all the swelling because of the RA being in a full flare, it was just another weird symptom which has finally come under control at last with the help of the meds.

    Eitherway, my point is, I'm fine on it so hopefully you will be too (although don't expect your sight to suddenly improve! :P :wink: )

    xx
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