Early RA treatment - Hydroxychloroquine?

Hi all, just diagnosed with early stage RA. My rheumatologist wants to start me on hydroxychloroquine. However, it's my understanding early aggressive treatment is of utmost importance and I've read that hydroxychloroquine treats the disease but does not stop its progression so I'm not sure if my doctor is aggressive enough. She's also prescribing Meloxicam for pain/inflammation.

Anyone else out there that was started on just hydroxychloroquine? I want to be pro-active in pushing for the best treatment for the best future possible.

V2015

31 Replies

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  • There are a lot of different views regarding treatment and unfortunately there is no easy way to work out which one is best for us as individuals. We are all different in the way the disease works and which drug will work for us (or against us). There are so many variables involved - age, number of joints affected, etc. This drug can be added to or changed further down the line if it is not enough but nobody wants to put extra/more drugs which can be very harsh into their body than is necessary. Farm

  • Hi I was diagnosed with early RA ,and put on hydroxycholoquine and methotrexate . I am now in remission with a good outlook. My rhummy said after only 11 months .i would try and push for the methotrexate if you can . Are you in the uk .

  • Thanks for your response. No I am not in the UK, but was drawn to this site. Of course my hope is also to be in remission with a good outlook - so I think the aggressive treatment of even early RA is very important.

    That's why I'm a bit worried about starting with just the hydroxycholoquine.

    I'm happy you are doing well!

  • Hi, it seems unusual not to start you on Methotrexate which is the gold standard treatment. It is reasonably aggressive but does a good job in most cases, and stops the symptoms and progression of the disease. Maybe see how it goes and ask for MTX to be added at a low dose at your next appointment. Perhaps your symptoms are fairly mild and the rheumatologist is not quite sure of the diagnosis at this time.

  • I don't think it's unusual to be started off on Hydroxichloraquine. My RA has been chased off into the long grass by the combination of Methotrexate and Hydroxy -although unfortunately I still have other connective tissue symptoms which plague me.

    True I was started on MTX but my RA presented quite aggressively after nine months of "wait and see". Hydroxichloraquine was added in after six months. Maybe it will be the other way round for you? Some of us seem to have a non erosive/ mild type of RA which can be seen off by aggressive treatment - but for me the price as been very high with severe drug reactions and I'm now only on a very low dose of steroids with not a swollen or painful joint in sight for nearly two years. Most people with Lupus are given Hydroxichloraquine first so maybe there's some uncertainty over your diagnosis?

  • I went on MTX last year. I started 9 weeks after the pain in my hands and feet started. My bloods were perfect and I had no inflammation in the joints (just a bit in tendon sheath). So I think very mild. but because I was anti ccp positive the rheumy said he wanted to hit it hard and I went straight onto 15mg MTX (with a 6 week ramp up). It is my understanding that you hit it hard and early now, within a so called "window of opportunity".

    But I think it was only the anti ccp positive blood test that made him decide to follow the MTX approach. without that he said he would only have given me a steroid injection into the joints to see what happened.

    Maybe your rheumy isn't sure what you've got.

  • I've only just been diagnosed and I'm only on hydroxychloroquine. This is because my white blood cell count is already very low so she wants to see what the hydroxy does before adding something else. I'm also keen for more aggressive treatment! As my wbc count is unexplained (though i had chemo 3 yrs ago which may have permanently damaged things) I'm worried I'll never get the 'good stuff'! My skin seems to have been affected by these meds.

  • I'm slightly confused by your comment 'it treats the disease but not the progression'. It is a DMARD (Disease Modifying Anti Rheumatic Drug) the same as Methotrexate and lots of others. This means that they treat the disease to stop it damaging your joints, so in a way that is stopping the progression. Unfortunately at this time there is no cure for Rheumatoid Arthritis. The best we can hope for is remission and that is the aim of all the DMARDs.

    For more information about DMARDs have a look at this NRAS page

    nras.org.uk/getting-establi...

    They also have a helpline you could call to discuss it.

    Becky

  • I started treatment with HCQ (although I had a different diagnosis at that point, it was in the same general area.) I had a good couple of years on HCQ alone. Unfortunately, the disease managed to slip out from under it, and so I went onto MTX and had the same experience - great couple of years & then things got really out of hand again. So I went onto a combination of HCQ & MTX. Nowadays I take leflunomide as well.

    Lots of us end up on a cocktail 2 or 3 different DMARDs. Maybe your rheumatologist is looking to the long term - to get the benefit available out of each of the drugs available - and you might find they gradually add things in to the mix if needed.

    As bpeal says, HCQ is a DMARD. It may or may not work for you - there's no way of knowing till you try, but that would be the same for MTX if you were starting on that.

    If you have concerns, ask your consultant about their rationale.

  • Thanks for your response. I really appreciate hearing from someone who was started on hydroxychloroquine and how your experience was. Good luck as you move on. This is a dreadful disease.

  • I too am all for early, aggressive treatment where necessary. It does seem that the DMARDs do the job for many people however. I think the way to proceed is to give the DMARDs a go, in accordance with NICE guidelines. So therefore if hydroxychloroquine hasn't worked or hasn't worked well enough for you after about 3 months, you need to be your own advocate in requesting that you try another DMARD in addition or instead of hydroxychloroquine. Something tells me you won't find it too difficult to advocate on your own behalf!

    Then, if you 'fail' 2 DMARDs after another 3 months (why do they say we fail, when it's the drugs that do the failing?) you can push your rheumy to consider you for biologic therapy. Meanwhile you can keep an eye on your own DAS score (there's an online DIY DAS calculator which I can find for you if google doesn't get your there) to see how likely you are to meet the criteria for biologics.

    Of course your rheumy may already have all this in mind. It's important to level with her I think and to find out exactly how she's thinking in respect to longer term possibilities for you. I reckon there's nothing wrong with starting off conservatively in terms of treatment as long as treatment isn't being constrained by budget considerations or, occasionally, plain old bad doctoring. Check out your rheumy, it's possible that you and her are actually on the same page. I hope so. If not you can always find a new one, even though that's a bit of a pain.

  • Most rhyme's will start one med at a time to see if it makes a difference. When i first started treatment i was on one for 2mths then another and then another. If you start everything at once your dr wont know which meds are working and which arnt.

  • Hi I was diagnosed with sero negative RA in May and i was started on Hydroxychloroquine only, with a steroid shot to keep me going. All my bloods were negative accept ANA, but inflammation and synovitis showed up in a hand ultrasound, I was told it was mild which was why I was only put on Hydroxychloroquine. I have had one flare whilst on these due to stress, which did last a while, it got to the point where i had to take diclofenac for a couple of days only, as i cannot really take nsaids because of my stomach, they seemed to do the trick, i no longer have that painful throbbing and constant aching i get with a flare, just some pain when i use the joints particularly my wrists. Other than that i am feeling a lot better with these tablets, please give them a chance to work i noticed a difference after about a month or so. I have also read the same as you about them not slowing down the disease, but i think if the doctors didn't think they worked they probably wouldn't prescribe them, they probably wouldn't help slow down the disease if you had aggressive RA, which is why you'd need stronger tablets, but for mild RA they would probably do the trick. Anyway i hope you feel better soon.

    Ganit :)

  • Thank you for your response. I am glad the hydroxychloroquine has been affective for you so far. I am scared spitless about how my future is going to be

  • Hi, I typed you a long reply this morning but it wouldnt send & then it was lost 😡

    I've been taking hydroxy for three yrs now & up until recently they worked really well. I have sero-negative RD so the Rhuemy is going on my scans & symptoms. He's monitoring me very closely & will introduce another med when he feels it's necessary. My stomach can't tolerate drugs not even over the counter painkillers so I've been really pleased with this drug, no ill effects apart from sun sensitivity. Did they tell you to get your eyes tested before taking them & then every 9-12 months thereafter. It's really important that you do that.

    I hope they work as well for as they did for me.

    Ps. The helpline is great if you have any doubts.

  • Thank you so much for your response. It is good to know of someone who was successful with just hydroxychloroquine - it seems most are not started on it alone. Yes, I'm aware and somewhat nervous about the eye part of it. Since starting Tamoxifen for breast cancer I have already had some eye effects, so that piece does worry me. So glad to know you have had a good experience. I hope if you have to change medications that it is successful.

  • Hi - the protocol in Victoria BC where I am seems to be that the base medication is Methotrexate then if it doesn't work (three to six months later) they add another one like Sulphasalazine and or Hydroxychloroquine ( I tried all three of those together).

    Talk it up with e Rheumatology nurse and if necessary get back to the specialist to ask more questions. We are running the show so have to be on the same page! All the best. Cheers Doreen

  • I was diagnosed early stage RA , and anti ccp positive so consultant hit it hard I was given methotrexate, sulphasalazine and plaquenil, took them for 2yrs now in remission , and just take the sulphasalazine , so happy days

  • I agree that all the research seems to point to early aggressive treatment. However, what's not clear to me is whether this applies to very early stage RA as well as full blown RA. So if you are in the very early stages with only a few joints affected plus reasonable blood markers perhaps it's different & better to take a more conservative approach? Or perhaps your rheumy was thinking about possible interactions with Tamoxifen, so didn't want to add in MTX straight away - although it is used for breast cancer maybe two drugs are not appropriate for you right now?

    All rheumies are different, but my experience has been that mine has welcomed my getting interested in the treatment of the disease and asking questions. So I wouldn't be hesitant about asking the question. I'm now on triple therapy, but Instarted with one (MTX) and hydroxy and then Sulpha were added in later.

  • Thank you everyone for your thoughtful replies. I am really thankful for your perspectives!

  • I just remembered that my Mum was on hydroxychloroquine, and it was the only treatment she had for probably 40 years (as it was the only thing she could tolerate). It definitely did well for her, especially as she had a fairly aggressive beginning with RA appearing at around age 13, and no real drug treatment until around age 30 or so. Up until she finally had to stop taking it (at age 70ish) I doubt whether many of her friends even knew she had RA, she was so active.

  • Well I like hearing that. Thank you!

  • I'm a bit late to this but I was also started on just the one DMARD, hydroxychloroquine plus a couple of NSAIDs & a short course of oral steroids. I was diagnosed & had my first four years of treatment in Spain, whether that's significant or not I'm not sure but I'm seropositive & had quite high readings from all the tests performed. I've also had meloxicam, the second NSAID I had & it worked well on the inflammation so hopefully will help yours too.

    I did well on HCQ for a while then the disease seemed to change direction a bit & methotrexate was added (this is called double therapy). For some reason this didn't work well for me so HCQ was dropped. I remain on MTX (6 years now) & other meds have come & gone as is often the case but they all have their job to do & keep me on the right track. I won't lie, I did have some side effects but that's not to say you will, or if you do they may be manageable. There are plenty of options for your Rheumy to prescribe if necessary.

    Please don't be scared. I know it's a life changer but many of us here do well on our meds. If you feel you're floundering we can try to allay your fears, just pop on & ask as you have here for experience in whatever. In the meantime maybe a look through the NRAS site would be helpful nras.org.uk & this nras.org.uk/getting-establi... especially. :)

  • Thank you for the encouragement. I am struggling with discouragement as the Tamoxifen I'm on for breast cancer has already affected my quality of life with side effects so adding this painful disease and yet another medication with side effects is just getting me pretty down.

  • I'm sorry you have that to contend with as well as your new diagnosis, it's surely not easy. I wonder if your Rheumy had this in mind when he suggested HCQ as your DMARD, taking into account that you're already needing to take strong meds & hoping whilst treating you not to be bombarding you more than possibly necessary? Unfortunately it's as it is & the side effects listed in the patient information leaflet are ones that were found when trialling the drugs & the pharmaceutical companies are duty bound to list them in order of frequency but there's no guarantee you'll have any of the less common ones or any at all hopefully. Try not to dwell on it too much, I know it's difficult but there is the train of thought that we can believe we'll have them when in fact we don't. I was concerned about one med I had to take & convinced myself I'd have problems when in actual fact I didn't, not the one I expected anyway!

  • Usually start on methotrexate.

    I did but couldn't tolerate it. Then onto sulfasalizine then hydroxychloroquine together.

    Had to come off the hydroxychloroquine as all the skin coming off fingers and toes and v sore. And headaches. They have to try 2 DMARDS before you can go for Biologics. I am just waiting now for them.

    Good luck.

  • Welcome to the site. Both my husband & I were started on Hydroxychloroquine when we where diagosed last year. I had to addon sulfasalazine back in July. My hubby is still just taking the hydroxy and is doing fine.

    Take care

    Sue

  • V2015

    I thought I would share my experience with you. I live in the US. I was diagnosed with RA in October of 2013. My main symptoms began in April of that year and by July I was diagnosed with inflammatory polyarthritis. My rheumy prescribed steroids and hydroxychloroquine at that time. When my course of steroids ran out and my inflammation, swelling and pain returned, methotrexate was added, then increased. When that didn't seem to help and my hair was falling out, the mtx was stopped and leflunomide was given. When my hair continued to fall out and symptoms didn't seem to subside unless I was taking steroids, I was changed to a biologic. All other RD meds, including hydroxy were stopped. First I took Humira for 10 months unsuccessfully and then Enbrel in April of this year. I am now well under control and feeling good most of the time. Enbrel made a huge difference immediately. I have only had one 4 week glitch which I believe was a bad 4 pack of Enbrel. I believe that my personal health insurance has a big say in what the steps are to treatment. And that is mostly based on the expense of each medication as biologics are extremely expensive.

    What sparked my interest about your experience is that you are taking Tamoxifen. I, too, was taking Tamoxifen for prophylactic reasons. After taking it for 2 1/2 years, I stopped it for various reasons, but within a month my RD symptoms began. This makes me wonder if there is some connection between Tamoxifen and the onset of Rheumatoid Arthritis. Curious.

    I hope you get the best treatment possible, but I am guessing there are certain steps that must be followed to satisfy the powers that be.

    All the best to you!

  • Thanks so much for sharing your experience. Might I ask if the RA symptoms started a month after beginning Tamoxifen or a month after stopping Tamoxifen?

    I'm glad you are finally doing well on the biologic. None of this is a ride we want to be on.

  • The most profound symptoms began about a month after stopping tamoxifen.

  • Hi I am on Sulfa 4 a day 20mgs metx inj I was at reumy appt yesterday and they are raising my metx to 25 mgs and also introducing hydrox as we'll , I got a steroid inj which should tide me over and they also took a load of bloods to start the screening for biologics if this doesn't work as I've been on the metx since dec and Sulfa for 2 years so touch wood this works if not it will be biologics but at moment all joints are worse,but I'm going to try to get back to work as I need to get in a routine again, but touch wood diet 2 weeks in I've lost 5pounds with exercise every day

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