Question about stopping Hydroxy

I went back to my rheumy for my 6 month check this past Thursday. He asked how I was doing on the Hydroxy. I told him that I didn't see any real difference since I started taking it, and I have had constant diarrhoea and some nausea since starting it. He said that he still isn't sure that I have RA (I'm seronegative on every test they have run, except small erosions in my hands), and he just wanted to try the Hydroxy to see if it helped. He said since I was having an adverse reaction to the Hydroxy and if I didn't think it was helping he took me off of it. He wants to wait about 6 more months and redo x-rays to see if erosions have progressed, then if they have he will deem me seronegative and bump me up to a stronger medicine. I found that all acceptable and reasonable. Well fast forward 5 days and my hands are hurting SO much more than they had been. Could the Hydroxy have already gotten out of my system that fast, and maybe it really was helping me?? Does anyone have any experience with this? Thanks in advance!

10 Replies

  • I'm not sure if six months is a reasonable wait under the circumstances and with you already having small erosions. I would ask to be seen sooner because sero negative RA can be pretty erosive and sneaky so this might be a bit of a risky strategy - the idea is usually to treat before erosions occur?

    I tried Hydoxy for around 18 months in all. I was taken off it after a year of taking it with MTX because it wasn't thought to be helping and I had a foul taste and nausea - which turned out to be the MTX.

    I then went back on it on its own for four months but unfortunately I had to stop it once more because I had an increasingly painful and itchy rash on my face which started to swell. I say unfortunately because the second time it did work really well for pain and stiffness. Each time I started I had some relief straight away and each time I stopped it I flared a bit. My rheumy said this baffled him as Hydroxy woukd take longer to get into my system as well as leaving it. However on the Lupus community I did read that it has a painkiller as part of the filler so someone's rheumy had told them?

    Like you I'm off RA meds now - four months so far - hoping to see my rheumy again in a month's time although no appointment letter yet. My hands, feet and knees ache a lot now but no real heat or swelling - but then again I rarely had this before either. I think you should push for an appointment sooner rather than later.

  • Hiya carotopgal. It certainly sounds as though the HCQ was actually working to some degree. It's half-life is up to 40-50 days so 5 days does seem quite quick to be noticing the return of pain, unless you're at the start of a flare that would have happened anyway.

    I'm seropositive & HCQ was my first DMARD but it started working within week. Unfortunately eventually it's effectiveness tailed off & my Consultant introduced MTX & when the two didn't work he withdrew HCQ. It seems MTX on it's own works for me.

    If you continue as you are now & start to notice swelling in your hands or either or both anywhere else by next week I'd see your GP & see if he can bring your appointment forward. He may prescribe something to tide you over until an earlier appointment can be arranged.

    Let us know how you're doing.

  • Hi, I've taken Hydroxy for 2yrs now. It kicked in very quickly. A few months ago I was feeling so well I decided to stop taking them BIG mistake! Within a couple of days my joints were swollen & very painful so much so I couldn't even walk. The thought of the Rheumy taking me off them feels me with dread. I'm fortunate that I don't have any side effects from them. I also have seronegitive RD. 6 months sounds like a long time without treatment. x

  • Like Caza I stopped Hydroxy for a while last year (with consultant's reluctant agreement as I was doing well). Well I felt the difference within about 10 days and needless to say I gave up on trying to wean myself off drugs. So Hydroxy can have quick effects.

  • Thank you everyone for your responses!! This whole thing is the biggest mess, but at least I know I'm not crazy. I've only been on the Hydroxy for 3 months actually. I had just finished my first 3 month prescription when I went in last week. I mis-typed in my question about it being 6 months, it's only been three. I think my rheumy is loath to admit that it's seronegative. And like Twitchytoes, I have no real heat or swelling in my joints, but lots of pain, so again, I don't fit his paradigm. To throw a monkey wrench into the works, I'm having cervical radiculopathy which is causing intense pain down both arms with numbness. He jumped all over that (I think he wants to blame all my pain on that), and quickly got me an appointment with a neurologist for next week (of which I'm very thankful!!). But I know this is totally different than all the joint pain that I've been having since January. UGH!!! Do you ever just feel like you are falling apart. :-)

  • I don't have cervical radiculopathy but I have had cervical issues for some time, starting with cervical spasm pre RD & was then diagnosed with cervical spondylosis, so is related somewhat to your problem. To add insult to injury I then suffered whiplash in a car bump a year ago & since then I've had cervicogenic headaches which emanates as the most awful nagging pain down onto my shoulders, upper arms & elbows & quite different from RD pain. My GP totally understands the difference & is treating it accordingly so surely your Rheumy must have an inkling the pain isn't like RD pain as he's referring you to a Neurologist with the idea of treating/releasing the pinched nerve. That obviously will be of help for your neck but I would have thought you also still need to see a Rheumy as it's, as I understand it, caused by degeneration & as such a form of arthritis & it sounds as though he's ready to sign you out of his care. It's possible you'll be under the care of both departments as the Neurologist will likely recognise the arthritis connection & refer you back.

    Whatever, keep pushing for treatment & let us know how you get on. ;)

  • Thinking about helix's reply, I didn't consider relating my experience as it's a different DMARD but I had 3 months off MTX & it didn't take long for me to feel the RD really attacking again. By the time my meds were reinstated I'd had to have my wedding ring cut off my hands had swollen so much. That may not be that unusual for some but I'd never had the swelling I've read of on here where my hands were concerned. So I'd err on the side of thinking that you do have active inflammation & the HCQ was actually working so maybe he should have replaced it with another DMARD & then tested again in 6 months. I know nobody wants to take meds that aren't necessary but it would seem that it is with you so I'd be down to see you GP quick sticks as we all know that the longer RD is left untreated the more the disease will progress & possibly cause more damage than necessary.

  • Hi Not sure if my experience would help. I am seronegative and have been on Hydrox for 6 monthes with little effect. Consultant still dithering about diagnosis as I have few outward symptoms though some erosion. He has gone down the route of a "steroid challenge" that is intramuscular injection. His view is if it helps immediately it's RA (which it has) if not then it's something else maybe fybro. Not exactly what you were asking but might be useful info. Would urge you to try and get appointment brought forward either through GP or maybe consultants secretary . Good luck

  • I am sero negative inflammatory arthritis and on Hydroxy for nearly a year. I am not sure it is doing anything either, but I think if I went off it I may well find, like you that it is. My hands, feet, ankles etc all swell up so it isn't having much impact on that side of things. I have also done the steroid challenge and yes it is like a holiday then crash back to earth with a bang and pain. I am now on 12.5 mg of steroids daily and later this month if my liver can take it will start mtx and imuran. Not looking forward to that at all.

  • Hello, I was on Hydroxy and it did not do one thing for me, it sure made my IBS flare up though. I was on the generic brand, then tried the name brand at my own cost because my insurance wouldnt pay for it, has a better coating on the pill, however it also was upsetting to my bowels and stomach. It did not lower any of my blood test numbers and i felt no improvement. Arava was no better.

    I just started Sulphasalazine with my usual meth. Its too early to tell if its working, but again the sulpha has bad side effects for me.

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