Hydroxychloroquine monotherapy: can it work for ra?

[Bubblemania]

This is my first post. The journey started for me five months ago when I started experiencing stiffness in both hands on waking. Also soreness in wrists and ankles. After Maybe three weeks I went to my GP who referred me to a private rheumatologist. Ten days later I met my rheumy who stuck me on 15mg of prednisolone for 2 weeks which temporarily "cured" me. When I came off the pred the symptoms returned. I went for an ultrasound scan which showed no erosions and blood tests that came back negative for RF and anti-ccp. I was put on 400mg hydroxychloroquine daily and 7.5mg prednisolone that was gradually tapered down to nothing. Now 5 months on I've been formally diagnosed with sero-negative ra. Given my RA was mild my rheumy said he wanted to hold off on the MTX for now and so Im just taking the HXQ with no steroids. So far, so good. Hand stiffness in morning remains but only for around 10-15 minutes in right hand and only occasional mild discomfort in other joints (mainly fingers) I'm told my ra is in remission though I can feel it's still there, lurking. I feel very fortunate when I read the accounts of others but who knows what lies ahead and if remission can be maintained. I'd really like to know if anyone else out there is taking HXQ on its own and how are you finding it?

[helixhelix]

It's still early days for you, so you could find that you improve further as the hydroxy really settles in. Many people stay just on that and never need anything else so you could too.

I'm on triple therapy, and am largely in remission and have been for the last few years. So remission can be mantained (with drugs). But I still get morning stiffness, sometimes only a couple of minutes, sometimes more. And I know what you mean about being able to feel it lurking. I've got used to that as it actually plays a useful role. Most of the time it's a very distant lurk - quite far in the background. But when it gets more evident it's usually a sign that I've been burning candle at both ends, and need to look after myself a bit better.

[Caribatty]

Hi Bublemania, I was giving like you 10mg of steroid to start but after 7 weeks, it had to be reduced to 5mg as I was retaining water and my legs were so swollen. The rheumatologist put me on Hydroxy 200mg twice a day and to continue with the 5mg of steroids.

That was a year and an half ago, but due to other problems with my liver, they don't want to add anything else if I can still cope and the RA is not getting worse. I have flares every now and then but as I am afraid of any bad reaction I don't have steroid shots. The doctor told me to take 20 mg for 5 days and then reduce it to 15 for another 5 and then 10 for another 5 days and continue with the 5mg as usual. Normally that works for me.

I would say if your RA is not getting worse and there is not erosion or anything else, keep using Hydroxy. It is probably the milst of all the medication for RA. Just make sure that you have your eyes checked at the beginning of the treatment and every year as Hydroxy can cause some damage to your eyes.

I hope you keep well.

[sylvi]

I take hydroxy, but not on its own,i take sulpha and mtx. Mind you i have had ra for 14yrs now. I have to say adding hydroxy and an increase in mtx has helped me no end.xxxx

[oldtimer]

I was on hydroxychloroquine only for many years, no erosions, mainly under control with flares controlled with a brief injection or course of steroids. But they decided that I was "burnt-out" and didn't need any treatment, came off, then next (big) flare started me on methotrexate. Which was a disaster for me... but not for most people.

[Fruitandnutcase]

I am. I started off on a three month course of prednisolone. It was amazing, no pain at all. I realised when I got a copy of the letter from my rheumy to my GP that I should probably have started on the HCQ as soon as I realised that the steroids had worked so there was a bit of a gap and I gather HCQ takes a while to kick in.

I'd say I'm generally fine now, the HCQ is holding things at bay. Then just before Christmas I had a bout of what I think was tendonitis, I don't know what caused it but one morning I woke up and the back of my hand was swollen and really painful. I felt like I had broken my wrist and could barely lift my fingers or turn my hand in certain directions and I was waking up with pins and needles. I went online and bought a wrist splint which made a huge difference. I wear them ( I bought another one for the other hand as well) at night and they hold my wrists in a good position so no more pins and needles etc.

I've been doing a huge amount of hand stitching these past few weeks with a massive amount recently and I can feel my hands stiffening up. I set myself a target of five or maybe seven squares a day to quilt then I sat all day on Tuesday and quilted twenty five! Not a great idea, my fingers felt raw and the area round my thumbs was so still I wore my husbands ibuprofen gel as hand cream under the splints at night. It all felt better in the morning so I did the last ten squares and the binding round the edges last night and the hands don't feel quite as stiff.

Like you I'm sero negative, I was lucky to be seen by a really well educated GP who fast tracked me straight away. The consultant I saw for my annual check up thinks I might be developing Sjorgens although I have no markers for that either and there was no suggestion to increasing my HCQ dose - I take 200mcg a day.

I went totally gluten free as soon as I was diagnosed with inflammatory arthritis - I've got autoimmune thyroid disease - Graves' disease and several autoimmune conditions and the arthritis was just one too many so I decided I had to do something to try to reduce the antibodies. I test regularly with a home fingerprick test from a company called Blue Horrizons and since I started over a year ago I've watched my antibodies plummet. That's really good but it also means goodbye for ever to my favourite big fluffy fruit scones which is kind of sad in a way. Anyway, I feel that being GF and reducing the antibodies must be helping - something.

[Rafrancie]

Hi and welcome! I was diagnosed 9 years ago because fingers on right hand could not close and painful to try. Wrists became weak, couldn't do much with wrist without support or I would get pain. I was given prednisone and hydroxychloroquine daily. Tapered off prednisone after 1 week. I had very few problems with pain, but really had to make adjustments in living to stay well.

Driving was hard on my wrists, picking up heavy fry pans needed two hands, etc. I was in remission for about 5 years. Then flares came on with a vengeance so put on methotrexate oral. Xrays showed changes from baseline, so I was switched to injections of methotrexate. No problems with tolerating and no flares in months. Doing very well. Only bother now is Sjogrens. Mainly annoying symptoms, but have pilocarpin for flares. Hope this helps you some..

[Richgirl]

Hello Bubblemania, do u like chewing gum? I like your name. I take 200mg once daily of HXQ. That's the only RA med that I'm on. But I have only been on that for about a month. I don't notice if it's working or not yet. I'm guessing that I haven't been on it long enough to know yet. That's wonderful that your in remission. Keep us posted. Blessings to you & yours. Richgirl🌻

[Hidden]

Hello, my hubby has been just on hydroxy for 2 years now and his RA is quite controlled. He lives his life as a normal person. He started on 400mg a day and now he is on 200mg a day.

I was put only on hydroxy too after being diagnosed with mild RA...but sadly my symptoms slowly got worse.

I would advise you to wait the full 12-16 weeks to allow the hydroxy to kick in. If you notice that you are still swelling, then demand to have another dmard added. Don't allow your doctor to lure you into a false sense of security..... sorry to sound harsh, but I don't want you to suffer as I did. I hope you have an easy time of it just like my hubby has

[Bubblemania]

Following a heavy cold, symptoms flared up this week. I guess my immune system was weakened by the cold and the RA stabbed me in the back. Hopefully things will subside again as I was enjoying the remission. Thanks to all for your kind words of support. Does anyone else have a experience of colds triggering a flare?

[Sondraking]

Does anyone have knots in the wrist because of ra