Hydroxy Advice Please.mattcass

Hi There has anyone been told they can only take Hydroxy for 6 months, I have already read several posts about people being on it for a year, I will check with my Rheumy Consultant or his nurse if he is not talking to me after my visit last week, if it's true that will be so disappointing for me as this is the only RA meds I am because of my IPF, have a good night All. Matt

9 Replies

  • Hi

    My previous private rheummy said here's no real,issue apart from ideally not being on it for more than 5 years as the risk of retinal damage increases. That's why they recommend/insist on a back of the eyes test before you start on it and annually thereafter. My dose was reduced to one per day after 6 months but principally because they started be on sulpha too. I stopped sulpha after 3 months but didn't ask if I should go back to 2 Hydroxy a day. Best to check with the rheummy nurses in your case. Hope you are good to go x

  • Hi Matt I was told the same as Ronnie by my rheumy. Apparently the dose is worked out according to your body weight and it is cumulative so it builds up over time in your system and that's why it can be a problem after five years for some people. If you want to find out more about how people have tolerated it for longer term use it might be worth going to some of the Lupus sites because it's the first line drug for this disease and for Sjogrens too.

    I came off it when I was having tolerance issues and my GP wasn't sure whether this was about MTX or Hydroxy or neither. As it turned out it was only about MTX and other stuff but for some reason my rheumy said for me to remain off it. However I was told last week by him that if my RA isn't well controlled enough by a lower dose of injectable MTX I will go back on it again. Quite happy at that prospect because it seemed to make a difference and isn't as scary as the other drugs we take to my mind. Hopefully it will work really well for you and you will get at least five years out of it. And perhaps they will have found another solution for you re your lung issues by then anyhow - fingers crossed. Tilda x

  • Hi all

    Very interested in the comments regarding hydroxy as I have now been on it for 15 months Monday to Friday and sulphasalazine. I was also interested to read that a back of the eyes check also is recommended before commencement of the drug as this was never mentioned to me, thankfully have just had my eyes checked and have been diagnosed with sjorgen syndrome. I have an appointment with my rheumy consultant in just over a week so will be discussing this with them to see whether it should only be 6 months. Thank you for asking the question.

  • My optician takes photos of the back of my eyes and keeps them on his computer. The idea behind checking them before you start is so they have baseline photos, so if things do deteriorate they will be able to attribute it to Hydroxy or not as the case may be. I had my annual check last week after a year on Hydroxy and everything looks the same as before, no issues

  • I've been taking it for some time (2 tabs a day) as well as Sulfa & MTX. I was told to have my eyes checked before and as I've had previous eye problems I try & get them tested once a year.

  • I had photos taken of my eyes when on Hydroxy but after I had stopped taking it (at the end of the 6 months), spots were found in my eyes which once the Hydroxy was out of my system, disappeared but the eye surgeon kept a check on it for a year afterwards. LavendarLady

  • Might they have said you could only have it for six months because of your lung problems? Think you'd really need to ask the doctor if it was their normal procedure for everyone, or if it was advice just for you because of your other health problems..

  • Hi matt, I was told to have my eyes checked before I started taking hydroxy & then twice a year whilst still taking it. As I think I told you I've been taking it for almost a year now. I've never asked how long I can keep taking it for but will ask my rheumy when I see him in October. I'd be really upset if I can't take it anymore as it works really well for me & like Tilda I think it's one of the milder ones with least symptoms but maybe that's just my experience. I would certaintly like to know if you find out that six months is all you can take it for.

  • I've just read on a NHS site that you can take hyroxy from six months to many years-phew x

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