For anyone who started on hydroxychoroquine only??

Hi quick question for anyone who started their medication with hydroxy I am wondering about the first signs that it was working..I am taking 200mg a day and have been for 6/7 weeks now. I have started this week having 1 good day followed by a bad day. On a good day I am feeling really well I have energy and I am not too tired joint pain still there but not distracting. The next day I feel I am back to square 1 I feel like I've been floored its a pain for those close to me and those I work with. Does this sound like maybe the tablets are kicking in? I havent got RA I am being treated for primary Sjogrens and going through more tests...Thank you in advance

12 Replies

  • Is hydroxy short for hydroxychloroquine?

  • yes

  • Hi Cathyh. I am only on Hydroxichloraquine presently. I was diagnosed with RA just over two years ago but have developed symptoms that are more in keeping with Primary Sjogrens to my mind - so half expect my rheumy to re-diagnose me but he hasn't so far. I was put on Sulfasalazine by my GP in the first instance, then Prednisolone and then Methotrexate - for 9 months in tablet form and for a further nine months in injectable form. I first took Hydroxy in April 2012 and then came off it a year later when my GP was trying to sort what was causing side effects. After a further four months I came off MTX as well and then after four months off MTX I was put back on Hydroxy at my request because there weren't many options left and my rheumy told me I wouldn't qualify for anti-tnf drugs yet. So in answer to your question I didn't start on this DMARD but am on it alone now.

    I think the Hydroxy is working very well as my ESR has gone down from 52 to 17 - the lowest it has ever been by far. I've been back on it at 400mg for over two months now and feel more or less pain free. The only thing I would say is that I had myself privately tested for vitamin D deficiency and it was significantly low. I told my GP who prescribed AdCal D3 for me because my calcium levels were depleted too. About four days after I started on this supplement I felt my mood lighten and a lot of aches, pains and stiffness have gradually lifted. I think it is making the Hydroxy and the Levothyroxine I take for Hypothyroidism work much more efficiently. That's not something I could argue scientifically - although the clinic who tested my vitamin D did say that people who are low find that supplements can be quite life-tranforming. And my instincts tell me that it is helping a lot. So it might be worth getting your Vitamin D checked too if you haven't already. I have very dry eyes and have just started taking Hylo Forte drops so am hoping that I'll soon be in remission on all fronts! Tilda

  • Thanks for replying how interesting I took vit d supplements just from the chemist a couple of years ago so that is worth checking. Are the prescribed ones much stronger than over the counter ones?

  • Not sure if my prescribed supplements are any stronger than over the counter ones. I take one AdCal D3 per day and to keep it away from food I take it last thing at night. My GP refused to take Vit D test saying that we are so far north that normal range is different and only people who were stuck indoors and unable to adapt lifestyle would be tested. I have hypothyroidism and RA, was on Methotrexate so had to be extra careful in the sun and have a family history of skin cancer as well as being very fair (actually makes Vit D defficiency less likely).

    If you can get tested then that would be best. Mine wasn't critically low but it was 28 and normal range is 50-200 and this was at the end of a good summer. The private clinic doctor phoned to tell me I needed to ask my GP for supplements. He was fairly defensive but did concede this was low and then told me my calcium levels weren't too high either?! I am pretty sure the AdCal is the reason Hydroxichloraquine is working so much more efficiently this time but that's just based on a hunch!

  • Hi Cathy, Your journey with Hydrox sounds exactly like mine. I have been on it for about three months now and I get exactly the same, some days I feel I have turned a corned and others (like today) I feel like I am back at square one! I also have Sjogrens.

    I had my last bloods which showed my ESR was 35 which was down albeit slowly. Had another blood test today so hoping it will be better still. Stick with it. I am due to see my Rhuematologist next week so I will let you know what he says. Hope you are having a good day. x

  • Sounds the same had another good day yesterday so far so good today I haven't had 2 good days in a row since August. Fingers crossed and yes getting my blood checked monthly for ESR levels so hopefully it will have dropped but also taking at least 500mg naproxen daily if needed or not so that surely will bring inflammation down..hope you are well x

  • I have been on it since Nov and as yet haven't noticed much improvement except that some days I can stay up past 7.30pm hahahaha My docs said it can take 6 mo ths to kick in. I had a reaction to it so I have had to do 200 one day 400 the next to cope with it which could be why it is taking a while for it to work. Let's hope your good days start to run together and eventually you will be all good!

  • Know exactly what you mean with the 7.30 I managed til 9 last night I will have to catch up with silent witness now..up with the lark every morning x

  • Thank heavens I can record things or I would miss all the shows I like on TV! hahahah

  • Hi,I take hydroxy 400mg a day, it's the only meds I take. I started on them about 18 months ago. I still get flares, they tend to happen if I've over done it & I'm over tired but apart from that I've been much better. Interesting enough I take vitamin D which I buy from the chemist. Hope they work as well for you as they have for me x

  • Hi there, to be honest, it didn't agree with me at all. My skin turned really blotchy, hated it. Never again will I go on it, but that's just me. Everyone is different xx

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