Anybody else been taken off Hydroxy.

[pirate-yaker]

Saw my Rheumy today and as I have been on Hydroxy for 13 years he told me to stop. Currently I have tinnitus and slight hearing loss that may be attributed to the meds. Anybody else been taken off (I have SLE/RA overlap) - thanks Malcolm

[kittykat68]

yes i weaned myself off it took 2 months i have scle with crossover of sle and fibromyalgia, my dermy told me not asked and since ive been totally free of them since jan , im proper ill haves falling out skin is itchy/burney/hot sweat and noooo energy i have problems sleeping so id kinda say i need to go back on it hope ive helped, im on methotrexate and thats a good drug for me for my skin karenx

[Lupo30]

Yes I was told to come off it, as it wasn't improving any of my symptoms etc. I went down to 200 mg first, no difference, and then came off it all together. As it wasn't helping me it made no difference. I wish it had worked for me.

[Nanuuk]

Yes, a short sharp "stop immediately" - after 19y 11mts taking it (on chloroquin phosphate the 1st 5y of that then. Moved onto hydroxy chl cos its was safer & ' doesnt have nasty side effects) I got a new rheumy & she sent me to an opthalmologist cos I said I could no longer see 3D images (films) - toxic build up of the drug on my retinas. Yes I stopped immediately but then the opthalmologist recalled me & said he needs to see me in 12mts cos the damage can continue.to build up even after you stop taking the drug!

[pirate-yaker]

Thanks for that guys - I'm just concerned that I have a major flare up similar to the one I had in Y2k - not sure if I would survive a similar one. Day to day my symptoms are fairly mild so it might be the case that the Hydroxy isn't needed - time will tell. Thanks again for that - Malcolm

[beckybooboo]

Hello there, I too came off hydroxy was put on it for 3 months 200mg then had it increased to 400mg but just couldn't tolerate it so I reduced it myself back to the 200mg, been ok though been off them now for 6 weeks and put onto steriods, just finished those and yes whilst my pain is slowly creeping back I can honestly say that I don't think that it's a result of the hydroxy but the steroids. Im sure that it will work out though, you just have to suck it and see. Good luck.