Severe Reaction to Hydroxychloroquine

I was diagnosed with RA in August this year. It came on so quickly and aggressively out of the blue, to the point that within 2 weeks from having painful hands, I could hardly walk or even dress myself in the morning, it was so frightening, especially as I've always been so healthy and fit (I'm 50), the pain was unbearable. All blood tests came back negative so I wasn't referred to a Rheumatologist until mid September and not getting an appointment until October.

Blood tests were showing a higher liver reading than normal but I was assured it wasn't alarmingly high (and although I like a glass of wine, I'm not a big drinker) sometimes this can be because of the Rheumatoid Arthritis but for the time being Methotrexate was not an option until I'd seen a liver specialist, so was prescribed a strong steroid injection and a daily dose of steroids 30 mg a day and Hydroxychloroquine.

The steroids worked almost immediately and it was such a relief to be nearly pain free and carry on with my life, especially as I'm self employed. But 4 weeks in I've developed the most horrendous angry, red spotty rash all over my torso and chest, mouth and neck! After 2 days I contacted the doctor and they saw me immediately and advised I stop taking the Hydroxy as this is a common side effect!

I'm not due to see the Rheumatologist again until December and am now starting to reduce my steroid dosage by 10 mg. I'm so worried the pain is going to come back. My Doctor has been in touch with the Consultant and they have advised that I should be ok to take Methotrexate after the allergy has gone. Now I'm worried about my liver as I've never seen a liver specialist!

Suppose I'm just reaching out to anyone, who has a had a similar experience? I hate the fact that I have to take all these horrible drugs and although I've heard great things about Methotrexate, I know it is really strong. Feeling so down about it all, I just want it to go away.

41 Replies

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  • Oh how frightful!! Why don't the doctors allow you to try sulfasalazine as it has no effect on your liver? Please ask them.

  • Thanks Susannedale, I will def be asking in my next appointment? I suppose it's just hit and miss until you find the right medication to suit you.

    Technically, I'm not on anything at the moment except for steroids! Which are just masking the pain (which I am grateful for) but I know they're not good long term!

    Petrified of the pain returning, especially over Christmas!

  • Hi Isanogirl,

    The steroids don't just mask the pain they dampen down the RA.

    Like you I went from being paralyzed with pain and stiffness which came on suddenly one morning to feeling I could climb a mountain 48hrs later thanks to the steroid jab.

    Yes longer term a higher dose of steroids do damage. I do hope the right drug treatment is found and you get your quality of life back.

    Be patient when it comes to the drugs, some take time to work. And don't be afraid to ask questions and push if you are not happy. Like you I am self employed so that brings another set of issues.

    I am on MTX but it has been a bit of a journey to get to this point.

    Joy

  • Thanks Joy, I didn't know that. I can see a slight puffiness in my face from the steroids. I'm a slim person, so can really notice it and like I said it has changed my eyesight. I suppose it's a small price to pay to be pain free, after having the injection, it was like night and day! Being self employed really worries me and brings with it extra stresses and not taking proper time off to rest.

  • The facial puffiness is called Moon Face. It's very common. I had it too. But don't worry as you move down the road of getting your RA under control and you steroids are reduced the puffiness will suddenly disappear.

    I saw the steroids as a magic bullet to get things moving in the right direction. Keep positive.

  • Feel terrible being so vain and rather that than the pain! Thank you!

  • Hey don't feel bad about being vain. It's a normal reaction to what you are going through. Many of us have been down that road.

  • Isn't it easier to complain about being vain? I too would rather complain about being vain than having to deal with the pain of RA. :)

    The puffiness will go away like Joy_1 said. Consider yourself lucky as I had a very rare side effect with steroids. I started to hear voices....thank God the voice was friendly.

  • Hiya Isanogirl. Try not to worry too much, the steroids are easing the pain because they're working on the inflammation, that's their job but they have no effect on the disease itself, that's why we're prescribed DMARDs (Disease Modifying Anti-Rheumatic Drugs). Like you my first treatment was with HCQ & steroids though mine were lower dose so I also had a couple of NSAIDs to help reduce the inflammation & in turn pain. HCQ became less effective & as the dose couldn't be increased I started double therapy with MTX. The HCQ was stopped & I've been on MTX nearly 7 years. I've since tried sulfasalazine (since withdrawn) with the MTX & recently started leflunomide. I still take an NSAID & for the past 3 years I've also taken a low dose maintenance steroid.

    I know it seems a pain needing to swap & change meds, each time waiting for them to work, but as much as we're all different so is our response to them. RD demands patience but given a little time you'll find the right regime for you. The disease can wax & and wane & test us with flares but that's how it is I'm afraid.

    Anyhow, welcome & hope you enjoy being here & find it helpful too! :)

  • I wouldn't say SSZ can't affect the liver! I didn't have any monitoring tests on HCQ, but on SSZ I have regular liver and kidney function tests - fortnightly at first, currently monthly and hopefully, soon three-monthly. A couple of very slightly out of range readings for me, but nothing enough to worry the consultant.

    I was offered Sulphasalazine as an option to Methotrexate, which the rheumatologist knew I really did not want to take.

  • I wasn't aware that sulfa required blood tests. I have been on sulfa for over a year without a single test. Not that I'm a big drinker, but I was also told having alcohol was OK while on sulfa.

    I know all meds come with the risks of side effects, but I was told sulfa & hydroxy didn't effect the liver.

  • Oh my word, are you joking??

    Sulfasalazine can cause all sorts of issues and should be monitored closely. Blood tests every 2 weeks in the beginning!

    I had big problems with drug.

    Isonagorl. Sorry to hear you've had such a bad time. Hopefully you will find the right drug for you soon.

  • It's very strange that rheumatologists have such different approaches. Mine was very clear that I needed the blood tests and shouldn't take the SSZ without having them. He even wrote the required schedule out by hand for me so that I wouldn't forget. I haven't been monitored on the hydroxy so assumed that was relatively safe - apart from the risk to the eyes.

    I think you probably ought to check with your GP or rheumatologist, just in case.

  • Maybe different countries have different approaches or protocals? I was informed that sulfa's rare side effects was your skin & lungs. Eithe rway following the advice of your rheumy is a smart thing to do.

  • Em, it's quite normal when any new DMARD is introduced to have drug monitoring bloods done fortnightly to begin with (usually for 6-8 weeks) then monthly for 3 months & then depending on the med just normal pre Rheumy appointment bloods. SSZ is a combination med of salicylate (same group as aspirin) & a sulfa antibiotic, as such liver problems are a rare side effect & why once established on it more regular (monthly or so) drug monitoring tests aren't always done. Obviously if only on SSZ & if indicated more regular bloods tests can be taken but will also be noted as part of regular testing for any other DMARD you're taking shows an anomaly in the ALK phos, AST or ALT.

  • Ive been on Sulfa for a month now and blood tests were never mentioned

  • Not even as I mentioned above Archerdee, new DMARD bloods? As I said tests are not always necessary as frequently as say MTX once you've been on SSZ a while but as you've just started it & will be increasing the dose it's usual to have more frequent monitoring bloods (sometimes for SSZ fortnightly for around 2 months or monthly for the first 3 months then 3 monthly afterwards) but if you're unsure if you should be having them do ask the advice of your Rheumy or nurse. Alternatively when your Rheumy initiated SSZ he/she will have informed your GP by letter & requested prescribing & monitoring. You could ask at your Practice for a copy of that letter to see if a drug monitoring schedule has been requested but he/she omitted to inform you.

  • Hi, I had blood tests the day he prescribed sulfa but nothing since. No mention of them during the appointment at all. I rang my GP yesterday and they haven't received a letter from the rheumy yet either! Me thinks I need to do some pestering! I'm good at that! X

  • Just as well it would seem! Maybe he was relying on your GP Surgery contacting you to make the appointments once the report's been read, though it's an odd way I must say. Did he even give you a drug info leaflet for SSZ? If not do have a look online, ARUK have a good one you can download. Really you should have one or at least read it so you're informed of what you're taking.

  • I've been dealing with this dreadful disease fo over 3 years. I am finally going into remission since I got myself another rheumy for a 2nd opinion.

    Please, if something dosen't sound right like high liver levels, don't just take mtx without trying sulfasalazine. I am not a doctor, but I don't want anyone else to suffer as I have .

  • Good news on the remission Suzanne!

  • So sorry your here with this, mine hit just like yours 5cweeks after my 50th birthday, i had a terrible chest infection that knocked me flat although ive never been ill before, i went to A and E with pain in my leg and they told me i must have damaged cruciate ligaments and goave me crutches, after 2 dsys on crutches my wrists and hands were so bad i couldnt turn my front door key, in fact it hurt so much i couldnt get it out of my pocket. Saw my gp and he said oh uv over done it on the crutches take these anti inflammatories ypu will be fine, but i wasnt happy, you see on my 50th my teenage son was taking the **** so i challenged him to a race round the block and beat him and i ran the last 20 meters backwards, then i did more press ups on one arm than he could do on 2 and he wouldnt take me on at chinups. So i was a big fit guy, i could not accept 2 days on crutches could do that, i went back after 10 days and saw a locum, he did some things and asked me 3 or 4 questions and then said "your going for hand and chest xrays and a blood test, you have Rheumatoid Arthritis", im "what?, wait my granny had that in her hip, he said no thats Osteo Arthritis, this is different, this is serious".

    I have never forgotten those words, i had the same reaction to hydroxychloroquin but it passed. Im afraid the rest is not good reading. But please try and stick with early treatments and i really hope something stops this for you.

  • Hello this happened to me exactly I thought I was reading my own post. I have high cholesterol and was put on statins just before they discovered my ra but when they did I also had very high liver readings and had to see a liver specialist who didn't do anything because the only thing to do is a liver biopsy which he didn't advise and put if down to fatty liver although nothing shown on X-ray only a very small gall bladder stone. My liver readings are normal now but perhaps it is the ra no one has ever mentioned that to me as I don't think it was non alcoholic fat liver. I am on Hydroxychloroquine but don't seem to be getting any better had steroids but soon as come off the pain returns. My next appointment is January and spoke to the nurse but she seems to want me to keep trying this drug to give it a chance been on for 6 months now though does it really take this long to start working. I also had very itchy red hands and it was never mentioned as being a side effect of the drug. That has settled down now thank goodness. Hope you get sorted I need to start getting ready for work and monthly blood test before. What a struggle xx

  • Maybe the liver is affected by the onset of RA before it's full blown? I don't have a fatty liver and all my scans and other liver tests came back fine. The RA consultant said the only time she'd not prescribed MTX is to people with fatty liver or diabetes and that didn't apply to me but she just wanted to be sure.

    I do like a glass of wine and certainly don't look forward to being tee total and the thought of having to go through christmas without a drink doesn't bear thinking about!

    Hope your appointment in January goes well.

  • Oh I do love and miss wine. I was a wine consultant and I enjoyed studying it. I was in the running for a position to introduce new wines from around the world into my province. Then BAM RA...... now I drink tea

  • I am hydroxy and i haven't had any reactions to it,i am also on mtx and it works very well for me sodon't be afraid of taking it. Hope the reaction soon leaves you darling.xxxx

  • I'm on MXT and hydroxychloroquin and last blood test a raised liver count but told to continue all medication and to hand another blood test in 2 weeks.

    All the best

  • Hi

    I was diagnosed in November 2014 as sero positive with RA. After a few months on Methotrexate the Consultant was worried about my raised liver function tests and put me onto Sulfazaline and Hydrochloroquine. I saw a liver specialist who did lots of scans and finally a liver biopsy. All these tests were painless but time consuming. Everything was fine and I was diagnosed with a deranged liver meaning sometimes it was fine and other the ALT reading was high. I am not a big drinker either just have glass of wine on special occasions. Whilst it is hard not to worry try to look at this positively and understand they have your best interest at heart and every test that comes back fine is a reason to celebrate despite the pain.

    Take care of yourself - it will improve

  • That's good news! I thought you couldn't drink at all on MTX? Is the occasional one ok? .... Trying not to sound desperate here! ;-)

  • As others have said, it would be worth asking about Sulfasalazine rather than methotrexate until you get an opinion from a liver specialist.

    Your GP should be able to help you with pain relief until you get the disease under control. It will take time for the medication to take effect whatever you have.

    Try to get other pain relief before the steroids wear off so your pain does not get really bad again.

  • Hi I'm rather horrified people on here are not having blood tests when on sulfasalazine. It certainly can affect your liver.

    Methotrexate is considered the gold standard and everyone reacts differently to every drug so it's finding one that's right for you. On methotrexate you should have blood tests every two weeks until you have shown you are stable on it for at least two months. You are monitored very closely to pick up any possibility of damage.

    Sulfasalazine is now mainly seen as part of a triple therapy approach and the ideal is not to be on that alone if you can tolerate the other medication. Though many people find it does work for them but the side effects can be just as bad as methotrexate so I wouldn't look at it as a less toxic alternative to methotrexate as it isn't.

    It may take a while to find a drug that suits you but fortnightly blood tests will ensure any potential liver damage is picked up before it happens.

  • Hi I've had RA and OA since 2014 and was on mtx, sulfazalasine and hydroxocloroquine and although I didn't have the rash I found the hydroxocloroquine went for my eyes , the dmards weren't keeping at bay my RA so now I'm on Benepali along with mtx and have dropped the sulfazalasine and Hydroxocloroquine, and I'm much better but have cataracts now in my eyes as a result off taking hydrocloroqine

  • How longno we're you on hydroxy before it affected your eyes?

  • I noticed a difference after 5 months and went to optition who told me I developed cataracts , I'm not on them now as dropped them and sulfazalasine when I started Benepali

  • Thanks so much for all your replies. I feel so much better equipped for when I next see my Rheumatologist. Being based in the UK and dealing with the NHS is waiting game and I feel lucky that I have been seen within a couple of months. But I am concerned that nearly 6 months in I'm still not on any proper medication for the RA. I might just take the plunge and opt for a private consultation for the liver.

    Concerns about my liver were raised this time last year after a routine blood test. I abstained completely from alcohol for 6 weeks and the results came back higher?! My doctor suspected it was nothing to do with alcohol and we then did another 6 weeks and the results were inconsistent? My RA consultant did say that inconsistent liver results can be the warning signs of RA and having spoken to the Liver Consultant she said he wasn't concerned and I should try MTX! I just feel as if I'm being paid 'lip service'?

    I'm still red raw from the Hydroxy and feel awful, the steroids although they ease the pain I just wonder what damage they are doing to the rest of my body. I wear glasses/contacts for close up reading and my prescription has changed dramatically within a month! I did have my eyes tested and checked last month when I went on the hydroxy and it was confirmed they were healthy, which was a relief!

    I really appreciate all the replies and support, it's great to speak with people going through the same thing!

  • Hi Isanogirl,

    Just a thought but I would make an appointment at the docs ASAP and ask to have your sugar levels checked.

    If you are on 30mg a day of Prednisalone this can have the unwanted effect of shutting down insulin production.

    The reason I say this is that high sugar levels are far more likely to effect your eyesight than just a few months on Hydroxychloroquine.

    Everything you have mentioned has happened to me regards the high liver blood results. I had an ultrasound on my liver.

    I'm allergic to Hydroxy but I still take 400mg daily but with an antihistamine chaser of 50mg Certrazine Hydrochloride in five separate doses throughout the day.

    Rheumy said benefits outweigh the allergy.

    My liver rejected Mthx and Leflunomide and Sulfasalazine nearly killed me ( allergy)

    Now on Hydroxy and Benepali ( switched from Enbrel as of today as it happens) I also take Naproxen twice a day and Omaprezole to protect my tummy. I have Tramadol for pain if I flare but it has to be bad for me to take it as it makes me nauseous.

    As I see it they are doing exactly the right thing by tapering your steroids down ready for your Rheumatologists appointment.

    The fact you respond immediately and well to oral steroids is a diagnostic sign in itself.

    Anyway, like I said, I would rule out high sugar levels if your eyes are really playing you up.

    Out of interest are you peeing more than usual or more thirsty than you would be normally?

    Good luck, as the others have said this first onset is the worst time and most of us have been through very similar to what you describe.

    I know it doesn't seem like it but you will get relief and things will become clearer.

    I don't want to count my chickens but I'm hoping for my January appointment to be the one where I'm told I'm in remission. From total disability in early summer 2015.

    All the best to you, good luck.

    Mx

  • Thanks Mandalou, not peeing more than usual? Infact, I have a bladder of steel! ;-)

    But having my sugar levels checked wouldn't be a bad thing. I have noticed twinges of the RA since stopping the Hydroxy from last week. I am now on 20mg of Prednisasolone a day as I lowered my dose last week. After a month I was supposed to drop down another 10mg but have been advised to stay at 20mg for the time being.

    I am still very red and blotchy and so itchy all over!

    That would be great news to hear you're in remission, gives us all hope!

    I'll keep you all updated x

  • This is a wonderful support system here. Only the specialists can advise you, but it is comforting to hear other peoples experiences with the different meds.

  • Hi, I was diagnosed with RA when I was 26. it started when I was 24 but took 2 years to diagnose. I started on methotrexate then hydracloraquine and sulfazalole. Sorry about the names I can't quite remember the names.i had severe reactions to all 3. I was having I've steroid infusions too. we progressed to methotrexate injections and they are just as bad. I then went onto leflunomide. I can say these are the best u have had. currently I have stopped taking all my Medstead now and tackle the pain with the odd pain killer. this is not on guidance from the GPS though

    If you have any questions I'll see if I can answer them.

  • Hi. So RA hit me so fast one day i woke and had the worst leg pain like if t was broken then 1 week later my right shoulder i was scared.. Here i am37 latin women who loves high heels and dance n have fun n to out the blue to not be able to do nothing it pissed me off.. But tried everything n now im on Metho shots n humira shot. im still not pain Free, somedays better then others and at this point im just dealing with it.

  • Hi I had severe allergic rraction to MTX and Sulfasalazine they wanted to put me on hydroxychloroquine but I refused after the reaction from the othef two. the Sulfasalazine was the worst rash ever it lasted 8 weeks I had burnt itchy skin and had to use dibrobase cream and Fexofenadine 180mg 3 times daily its been hell. I am now being offered Benapali by injection but I am still worried I could have anothet allergic reaction . DONT let the put you on Sulfasalazine its similar to hydroxychloroquine.

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