hiya been to see my rhumy today and he has added hydr... - NRAS

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hiya been to see my rhumy today and he has added hydroxychloroquine to my meds. does anyone else take this x

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Neverwell profile image
Neverwell

Hi yes I am on this as well as humara if been on it for two weeks and feel OK Karen x

Jennysteve profile image
Jennysteve

I was given this first, I was taking three but have gone down to two.

I have no idea what it's supposed to do but I have been on it for four years.

You must get your eyes looked at every year, that's all I know about it.

Hope it helps.x

Caza profile image
Caza

Morning,yes I take it,I've been on them for just over a year now. I had to have my eyes tested before I started them & then again 6 months later,now just once a year. I had a slight rash after about four weeks which soon went. I try to keep out of direct sunlight as this causes burning & you might have to use a high factor sun cream. Apart from that they've been great, I take 2 a day with food. They've really helped me. Hope they work as well for you. X

mattcass profile image
mattcass in reply to Caza

Hi Caza, How long were you on it before it started to work i was told 12 weeks then it was 12/16 weeks, I'm on week 15 and for the last two weeks both my wrists 24/7 constant agony painkillers totally useless.Mattcass

Caza profile image
Caza in reply to mattcass

Hi Matt,I wondered how you were doing. It was about six weeks,for me it's helped with the flares I was having almost every other week,now it's every couple of months. The constant muscle spasms in my feet,which I was getting 24/7 has all bar on two or three occasions,stopped. It was so bad one day that I had to take my boots off & walk,well hobble bare foot in a busy shopping centre on a Saturday mid November,not a good look. I even turfed some hoodies off a bench so as I could sit down! Not to helpful when i was driving either.

I get a lot of pain in all my joints & I'm really stiff in the mornings but as I can't take painkillers I just have to get on with it. I try & walk for an hour most days & find this helps,I'm not the best of sleepers so when I wake at night I stretch my joints. My biggest fear at the moment is that my toes & fingers are changing shape.I'm seeing the consultant on Monday & I'm terrified that he'll suggest something stronger. Or worse that he takes me off hydroxy!! Hope this helps x

mattcass profile image
mattcass in reply to Caza

Hi Caza thank you. it's a scary thought for me if the Hydroxy does not work as it's the only RA drug i can get, my Rheumy Doc says the RA will concentrate on my hands and wrists because at some time everyone of my fingers and both wrists have been broken several times over.Matt

abannister profile image
abannister

Been on it 18 months along with Sulphazalazine and methotrexate seems to work for me with no side effects. And yes tell your optician you are on a quinine based tablets as this can effect the back of your eyes. If you don't wear glasses just find an optician they will take scans of the back of your eyes as part of a full test, easy.

oldtimer profile image
oldtimer

I was on hydroxychloroquine for some years, then they said it wasn't strong enough and I transferred to methotrexate.

Then when that wasn't working well enough they added it back in and I had an allergic reaction - pity as i found it relatively free from side effects.

You do need to be careful about exposure to the sun. Wear a high factor sun screen and keep out of the direct sun when you can.

kernowapple profile image
kernowapple

I have been on hydroxychloroquine for the last 6 months during that time I have been able to reduce the dosage of the MTX from 12.5mg to 5mg a week.

For the first few days of taking hydroxychloroquine there was a little bit of dizziness but this only lasted for a short while.

I can also endorse your need to be careful about exposure to the sun. Wear a high factor sun screen and keep out of the direct sun when you can. Not so much of a problem at this time of year.

There seems to be a new school of thought using it in conjunction with MTX these days I can only say that it is working for me.

DavidT profile image
DavidT

I have been on hydroxychloroquine for 18 months in conjunction with MTX and latterly Sulphazalazine and it does seem to help. I have found it virtually side effects free but you do need to have your eyes tested every 12 months

micky40 profile image
micky40

Hi,

I have been on it for 16 months now as well as MTX 25mg they tell me that they are working but not good enough so they have just added in Enbrel, I'm unsure what they should do but at the moment I dont feel that any of them are working as the painim in is the worse ive every had.

I was told that they can effect the eyes so I have them checked and now i need to wear glasses so I guess they are doing something not sure they are making me better.

Hope things work out for you xx

Case profile image
Case

Hi, I've been on it for 2.5 years. It was first 1 I was put on. Consultant said that it works best on younger sufferers. I am also on sulfasalaseine and methretroxate as well as cimzia. Not had side effects from the hydro chloroquine . (Apologies for bad spellings !) hope it all works out.

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