Hi all, I haven’t posted anything for quite a few months as a lot has changed and I thought I would share.
In May I was diagnosed with RA by a registrar at RA clinic and put on methotrexate, I took two injections , it made me fell so ill and as I was due to go on holiday in a few weeks decided not to take it and to review this med with the clinical team after my hols. Finally when I got a review with the consultant ( not the registrar), he informed me that I did not have RA but Palindromic Rheumatism and have now been prescribed hydroxychlorquine. This is a much better outcome so was really pleased but also really concerned that I could have been on methotrexate for months feeling awful, thank god I made the decision to stop until review.
My question is: I haven’t started the hydroxychloroquine yet but wondering if any of you have taken this and how it has affected you
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Hello, glad you're on a treatment path now that feels much better for you. I've been taking hydroxychloroquine for nearly three years and had no problems with it at all, and no side effects that I'm aware of (those seem to belong to the methotrexate I take alongside!).
It might help to be aware that hydroxychloroquine tablets generally have a bitter taste, so it can help to glug them down in one go with water and not hold them in your mouth. This way, personally I don't taste them at all. Also, this has probably been mentioned to you already but it's important to have annual eye checks when taking hydroxychloroquine as there is a small chance of side effects affecting vision. Any optician will know the check they need to do in relation to hydroxychloroquine.
I hope this proves to be an effective and side effect-free treatment for you when you do get started, and wish you all the best.
sorry you been through this, i am on hydroxychloroquine been on it for nearly 7 yrs now, its a fantastic drug and really helps me. no issues with it. no problems, all good
Same advice from me. I’ve been taking 200 mcg hydroxy since 2015. The most important thing is to check your eyes. If possible have a baseline test, your optometrist should know what to look out for. You will need an OTC eye scan then have a test and scan every year afterwards. You can also keep an eye on things if you download an Amsler chart and use that regularly brightfocus.org/macular/pub...
I believe that amount of hydroxy you are prescribed goes by your weight so if you don’t feel it is working it’s not one you just take more of. I was told by a consultant I could ‘top up’ with a couple of paracetamol should I feel the need and I do that occasionally.
When I started I was prescribed prednisone which decreased - then stopped completely - as I started the hydroxy, I was told it takes a while to kick in but I can’t say I noticed.
It does need a big glug of water - as virtual reality says it tastes nasty if it gets stuck but apart from that I’ve not had any side effects. Good luck with your treatment, hopefully it will suit you much better than the methotrexate.
not sure if you can see my reply to another user but my reply was that I had 3 retina tears on right eye and 1 tear on left eye and just had cataract surgery !!!!
No, I can’t see your reply but in that case I definitely wouldn't want to take hydroxy. You could always speak to your eye consultant and see what they have to say.
Hi, glad you're on the right treatment path now! I was put on hydroxychloroquine early January and almost 3 months later, I developed an all over body rash that lasted for about 2 weeks and felt very unwell. I was taken off it and put on salazopyrin. I was told the reaction I had was very rare. I am sad as I feel hydroxychloroquine was really starting to help with the RA. Salazopyrin, not so good at the moment. I do know of a few people on hydroxychloroquine and they say it's great with no issues. I just wish I could take it. Good luck, hope all goes well.
I’ve been taking Hydroxychloroquine for 14 months, initially 200 mgs for other issues then an increase to 400 mgs for RA since February this year. The drug doesn’t seem to have have helped anything which is disappointing, hopefully you’ll get a good result.
Baseline eye test before starting then yearly for 200mgs and 6 monthly for 400mgs.
It's sadly a question like how long is a piece of string with no answer and probably best not to know as if you think it will happen it well might. I never now read PIL's until I get what I think might be a side effect as the mind tells me I feel sick because it said I'd feel sick. I hope it helps you though as I've no experience of it.
I’ve been on 400mgs of hydroxy for about 10 years now. At the start they made me feel very nauseous so I had to take one tablet and build up. It does takes months to start working, The only one that doesn’t have the bitter taste is the Zentivia one, a few of the other brands don’t agree with me so if you are lucky you may get zentivia. My eyes get checked once a year at the hospital but so far so good. It seems to work for me but everyone is different. Best wishes
Hydroxychloroquine was the first medication my Rhemy put me on, as I was hesitant to start Methotrexate. I had a baseline eye assessment before starting, and I was given a paper with a grid on my my optician. She told me if the grid ever got out of alignment go back asap, and was told I should have an appointment once a year instead of every two.
Worked fine for the first 3 weeks, joints were so much better, so was movement managing longer walks (bar stiffness - long story, one of my other posts explains why this may be). Side effects were dizziness the first few of days taking (pharmacist insisted I needed to take it in the am), decided to switch to before bed, this side of effect was no longer an issue
Between week 3 and 4, I developed hives up the inside of both arms. Itching like mad all over my body. Went to pharmacy, showed them, told them what meds I was on. Oh, you don’t get such reactions to meds after 3 weeks, gave me antihistamines (spoiler alert, you can, and my mum had something similar 3 months after starting her own meds for something else).
Did some research; realised it could be the meds, antihistamines were not doing much to help, took photos sent to Rhemy and was told to stop asap!! As soon as i stopped, symptoms started to diminish, clearer 3/4 days later.
Moved to metho injections (due to history of gastric ulcer), that’s a whole post in itself - nasty side effects - too many to go into but let’s just say my bladder function has not returned to normal 1 year later, that was not the only side effect.
I’m on biologics now, and doing much better.
However, don’t be discouraged by my story, every medication has potential side effects - many do wonderfully on Hydroxloroquine (I had loads positive stories on another Arthritis community - I had not discovered this one yet).
Same for Metho, same for adalimumab the med I’m on today. Best thing is to know the potential side effects, watch out for them and work with your Rhemy team to get the best treatment plan that works for you.
I agree with Lizard 28 - Zentivia is excellent. Less stomach problems too. You can request that brand. It took 3-6 months to get back to 'normal ' but worked a treat for me. My RA is also palindromic. Hyroxy was the answer. Fingers crossed it is yours also.
Hi. Everyone is different I'm afraid. I was on it for a short while and it didn't agree with me. But then out of all the DMARDS thetd is only sulfasalazine that agrees but even that is uncertain at the mo due to continued coughing for a year.
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New treatment plans advise needed please
Please Advise...RA 
RA and Methotrexate
Advise please.
