Hydroxychloroquine experiences

Pebbles170

I'm 23 and was diagnosed with RA about 4 years ago, after battling with GPs for years who believed it was just 'growing pains'. Most of the time my pain and stiffness is manageable with NSAIDs, and I'm reluctant to try any other medication because I'm not sure the side-effects are worth it. The bane of my life is the constant fatigue, but no-one seems to know what to do about that.

My rheumy keeps pushing Hydroxychloroquine, and the last time I went to the hospital I was feeling okay so decline, but I'm in the early stages of a flare-up so am now reconsidering. Has anyone tried Hydroxychloroquine, and how did you get on? What were the side-effects? Did it take away fatigue as well as pain? Anything you can tell me would be really helpful, because other than a photocopied leaflet my rheumy has told me next to nothing!

scattered

Hydroxychloroquine is considered to be one of the least potent DMARDs, if any of them can be called that! I've been on it for five and a half years, with combinations of other drugs. On it's own it does nothing for the RA, but the RA is difficult to control at the best of times! The only side effect I had from it is that is has bleached all my body hair. To begin with everything was white, from the hair on my head, to my eyebrows, legs and underarms. Now most places have regained their colouring, but my eyebrows and lashes are still bleached.

Hydroxychloroquine is a good DMARD for mild inflammatory arthritis. It will prevent joint damage from occurring, which anti-inflammatories and pain killers will not do, and may also help with the fatigue you are experiencing. It is usually well tolerated by people.

premierscfc04

Hi Pebbles
I took Hydroxychloroquine about 15 years ago for almost a year and had no noticable side effects, but unfortunately it did not improve my condition so I was taken of it.

As a word of warning, my optician told me to check my eyes once a week using a sheet of graph paper, as he said the drug could in very rare cases affect your vision and any deterioration it caused was irreversible.

I hope it works for you..

lizzieuk1

It did nothing for me have tried it 4 times now - with methotrexate, and did nothing noticeable so stopped it I really don't need to take drugs that don't work my body feels battered as it is!
I have no idea why they haven't offered u methotrexate that's considered the front line treatment for ra- think I would be asking rheumy why they haven't offered it first, nsaids are not considered sufficient to prevent join damage.

Mat48

Just a thought but they might be being extra careful because you are of childbearing age and Methotrexate is not a good drug to be on if you are considering conceiving so some doctors will not consider using it on people of childbearing age I've heard.

Re Hydroxychloraquine - as others have said it's the least potentially toxic DMARD and you don't have to have regular blood monitoring on it. I took it for about a year but came off it and injectable Methotrexate recently to try and find what was causing sores in my nose and blister spots on my face - plus constant nausea, dry eyes and mouth and a horrible taste. After four weeks off Methotrexate and 6 weeks of Hydroxy I learned that it was this Hydroxy drug that was interacting with the Methotrexate to make me nauseous and this was increasing as the dose of the MTX was increased. So now I've come off it because it didn't seem to be making much difference to my RA unlike the injectable Methotrexate. I'm covered in little spots just now and all other adverse symptoms have persisted so definitely not being caused by the Hydroxy at least.

I had read that it can cause hair lightening and over the past year my hair has gone very white - still goldy colour and rather lovely though I do say so myself - everyone imagines that I put blond streaks in it but it's entirely natural - I haven't got time to be highlighting my hair white just now! So I'm rather chuffed with this side effect and will watch with interest to see if the reddish colour returns - but I have just turned 50 so it might be an age thing!

The thing you have to consider, at your tender age, is what you want to feel like ten years or more down the line with RA/ inflammatory arthritis. If you read up about the disease and what it might do to you then you may feel that taking the meds as suggested is the better option.

Interestingly Hydroxichloraquine is also the first line drug for Lupus and I do know of people with RA for whom it's been very effective on it's own.

Someone posted this moving little film on the NRAS HealthUnlocked forum the other day - it may be of interest to you. http://www.openculture.com/2012/07/astonishing_film_of_arthritic_impressionist_painter_pierre-auguste_renoir_1915.html

Mat x

stickywicket

Please consider taking you rheumatologist's advice. NSAIDS don't hold the disease back, only DMARDS will do that.

I've been on hydroxy, with methotrexate for about 13 years and they work well for me with virtually no side-effects.

Dancing Girl

Hi Pebbles,

I've just been given hydroxy to take alongside my leflunamide - i started it tonight so i'll keep you posted on any noticable side effects. i've had arthritis since i was 24 (now 39) but only the last 3 yrs they diagnosed RA.

Look forward to chatting x

ktmate

I can understand your reluctance to take unnecessary medication. I have just started taking hydroxychloroquine and was warned that there is a slight risk of damage to the eyes - after a healthy eye check I was unsure whether to risk damaging the only part of my body that was healthy but after chatting to an optician friend, he pointed out that in his experience it is only a theoretical risk and he has yet to come across it and there are complictions to eyes that RA itself can cause. I realised I was worrying unnecessarily and that controlling the RA was my top priority. I have only started treatment 6 months ago so am still waiting for things to get better as its a long road. My mum has had RA for 30 years and is now severely disabled by it; having seen this happen to her throughout my lifetime I really believe that slowing this disease down and preventing joint damage has to be a priority. If you start getting side effects then you can always stop taking it. KT