I’ve been prescribed Hydroxychloroquine

[ThomasTom]

I’m already taking Nabumetone every day for two years or so and find it quite effective. But the arthritis is progressing and the time I feel pain is at night or as soon as I stop working and relax. So I’m trying the Hydroxychloroquine and was wondering if it’s worked well for anyone? Thank you

[Mistydawn]

Hi Tobt_Tom, not heard of Nabumetone but I did take Hydroxychloroquind when I was first diagnosed with RD. Seemed okay, no initial side effects except discolouring of my gum and skin on the chin after about 2 years when it was discontinued.

Were you told about having your eyes tested prior to and annually once you start on Hydroxy?

Good luck

[phil_54 in reply to Mistydawn]

Hi, I have been on Hydrox for 4 years now and recently stopped the reason for stopping is the main side affect i think for me was my eyes became very irritable IE dry sore and watery all at the same time i tried various drops but didnt help much i will be asking rheumy on next visit about a different immune supressent, When i had my last eye test i was told there was minor scaring to my left eye but not sure if this is because of the hydrox or not.

Good luck

[helixhelix]

Nambutone is I think an anti-inflammatory? So not really great in the long term, with risks to heart & stomach, so perhaps it is time to try something else. And as you know it doesn't stop the disease developing further.

Hydroxy is one of the drugs I take (plus Methotrexate & sulphasalazine) and it works for me. It is said to be the mildest of the disease modifying drugs, with the least side effects. I certainly didn't have any trouble starting it and have been on it for 7+ years now. I have my eyes checked annually. I think you've previously stopped Methotrexate, so maybe this will be the one that works for you.

[ThomasTom in reply to helixhelix]

Thankyou. Good to hear. Yes the Nambutone is an AI, I’ve really bad acid reflux on and off so need to stop taking it soon... I’m hoping this works.

[helixhelix in reply to ThomasTom]

Do you take a stomach protector? That can help loads with reflux.

With all these things you have to weight up risks & benefits. There's been a lot of studies recently that throw lots of things up in the air. For example ones recently published about people on Methotrexate having lower rate of dementia and breast cancer. Go figure....

Personally I feel that having uncontrolled RA has so many risks, particularly cardiac problems, as well as impact on quality of life that I now focus on maintaining the best quality of life I can, and will worry about other things only if I have to.

[ThomasTom in reply to helixhelix]

Very good point. I’m surprised I haven’t been offered a stomach protector— I might speak directly to my GP and see if that’s quicker than an appointment with my specialist. Thanks

[wishbone]

I've been taking hydroxy for a couple of years. Due to complications It's the only RA med I can take. It's a relatively mild drug compared to other RA meds, which does show, at least with me, as it's not as effective as enbrel & methotrexate that I used to take so I do need to take regular pain relief as well. That said, it's definitely helping me some, and seems to be slowing progression but difficult to be sure about that. As Mistydawn says, you need to have a eye test before starting hydroxy and annually thereafter. The only noticeable side effect I may have is deterioration of my two front teeth. I say may have, as it's difficult to be sure as there could be a couple of other causes. Although it's less potent than other meds you still need to be aware of any other side effects as we are all different.

V

[ThomasTom in reply to wishbone]

Thankyou. Really good to hear your feedback.

[wishbone in reply to ThomasTom]

I just added a couple of edits that you may have missed?

V

[ThomasTom in reply to wishbone]

Thanks yes. I’ve read about side effects etc. Personally I want to avoid the stronger immune system suppression type drugs for as long as possible as I believe they will increase the chance if my getting cancer although this is just an unsubstantiated fear that I have.

[wishbone in reply to ThomasTom]

If you can get by with milder meds then that's the way to go in my books! I can't take immune suppressants of any kind, including steroids, because I run a high risk of getting a serious infection. I've already been hospitalised with two infections whilst taking enbrel & methotrexate and certainly don't want to go there again..scary times indeed!! Been clean of infections since stopping immune suppressants 18 months ago.

Good luck with the hydroxy.

V

[ThomasTom in reply to wishbone]

Thanks and really good to hear you’re ok.

[medway-lady]

I agree milder drugs are the ones tostart with but the risk of not taking DMARDS are horrific damage, RA related conditions in my case blood clots in the lungs and DVT's, lung damage I could go on but cancer is one I've never even thought about, what makes you afraid that DMARDS cause cancer? At the moment I take permant antibiotics sometimes backed up with steriods as I also have bronchectastsis another immune condition. So what it's keeping me well, and to be honest I like steriods so am glad they are not dished out like smarties. I take Lefludamide and its put the RA into remission.

[ThomasTom in reply to medway-lady]

Thanks. It’s good of you to share your experience. It was something I was told that the cancer rate is very high amongst people who take the strongest drugs. But it was probably the opinion of a friend, but it got to me.

[helixhelix in reply to ThomasTom]

Aleays best to do your own research, or talk to your own doctors, rather than relying on friends - unless of course they happen to be an oncologist!

Here's one study which to me shows a small increase not a "a very high" rate. So depends on your attitide to risk.

Eight cases of cancer (1.88%) were diagnosed in the methotrexate population v six cases (1.43%) in the rheumatoid controls.

Full text here

ard.bmj.com/content/56/2/97

[medway-lady in reply to ThomasTom]

It just might be that the ones with cancer take the most toxic medications. Beware Dr Google and friends opinouns and stick with GP, consultant etc.

[wishbone in reply to medway-lady]

I totally agree with you about the serious risks of not controlling RA. I did state in my previous post to Toby-Tom that "If you can get by with milder meds then that's the way to go", but probably should have been more specific, especially as I myself have RA related lung damage

Thanks for pointing it out

[nomoreheels]

Hiya Toby_Tom. Hydroxychloroquine was the first DMARD I was prescribed, along with nabumetone, celecoxib (omeprazole as well to protect my tum) & a course or oral steroids. It worked really well for around a year until it became less effective, quite why we never really knew but it was then I started methotrexate alongside. I continued taking it until it was obvious it wasn't contributing anything so it was stopped.

As has been mentioned your Rheumy will (or should) suggest you have a baseline eye test at your opticians before starting HCQ as there is a very rare condition which can be attributed to HCQ, retinal toxicity or retinopathy, thereafter you should be screened for it annually whilever you continue on HCQ. As I say it is rare but worth mentioning nevertheless. It's less likely retinopathy occurs within the first 5 years but after that the risk increases slightly so it's important you make your optometrist aware how long you've been prescribed HCQ at each annual test. New UK guidelines for eye testing were released just the other day so double check your optometrist is aware of them at the start of testing. Your initial baseline examination should include a fundus examination, also SD-OCT & visual field testing should be added to the initial examination if you have or existing maculopathy (damage to the macula), more common if you're diabetic.

I hope you find the HCQ helps, it's a commonly prescribed DMARD & it works well for many.

If you feel the pain is worse at night it might be worth mentioning that to your Rheumy as it's also indicative of osteoarthritis. I have both RD & OA but it's the OA that affects me more at the end of the day when naturally we start relaxing. I find it helps to not sit for lengthy periods, generally I try to get up & move around every hour or so. The pain relief & muscle relaxants I have nowadays is for my OA not the RD. Exercise helps too, maybe some gentle exercise plan can be sorted for you too.

[ThomasTom in reply to nomoreheels]

Thankyou that’s really good advice I’ll get my eyes tested ASAP and to the detail you’ve been kind enough to type up for me. I agree I think it’s the OA at the base of my spine that’s the most disruptive— but I work manually so sometimes I have a burning sensation in all my joints and whilst not chronic it’s very hard to get comfortable and to sleep once paracetamol has worn off. I’m just happy I’m able to work still ~ I love my job so as long as I can work as a gardener I will.

[Neverending63]

I’m on hydroxychloroquinine along with a biologic. It’s the only DMARD I can tolerate, I am allergic to all the others. The only thing is you have to ensure you have an eye test before you start it then every year whilst on it. My optician was good and gave me a grid thing to take home so u could check my vision my self periodically during the year. Hope it works well for you.

[Nsmith13]

Think it just slows things down I had eyes tested just worth a try steroids for me at moment just for some normal time I not goin bk on mtx or benapali as it's made me worse but at least I tryed !!!!

[Loura]

I took this med for just over a year. Unfortunately started to elevate my blood pressure so have ceased taking it now. As most have already mentioned it is not at volatile as other medications on the market. Just keep an open mind and keep a diary. Cones in very useful when discussing treatment plans in clinic. Good luck

[ThomasTom in reply to Loura]

Thankyou that’s good advice.

[Tara26186]

Hi this is one of the ones I take (along with another) and have no problems at all on it and been on them all for just over a year and all seems okay so far.

[ThomasTom]

Oh good, it’s easy to get tipped into a negative state about possible side effects but really one should be balanced and try things. I appreciate your reply ~ thanks

[Tara26186 in reply to ThomasTom]

Your most welcome. Advice is to never google things because they will automatically come up with all the negative side effects which scare people off. Everyone is totally different when comes to the medication so a lot of it is trial and error. Tbh any medications are ideally not brilliant to be on lol but with RA don’t really have a lot of choice otherwise could end up being a LOT worse. Am on Hydrox and sulfasalzine for a year and actually now have pretty normal life. Sulfasalzine one had initial problems with as quite hard on the stomach but once get through initial few months things start settling down just perseverance tbh. I now only get the odd few flare ups which is only quarter of the pain I experienced. Was getting flares everyday and most days struggle to pick up a cup or even walk properly. But can honestly say would rather have odd few flare ups I have atm to go back to the pain I had before where was starting to loose my independence and being 32 not really an option lol I hate relying on other people for help! Fingers crossed for you