hi all

been going thru recent posts and i noticed that several of you have failed with the hydroxy--i assume this has been down to reactions/rash sickness etc

i'vbeen on it for --i think 2 years +--it was started by my first consultant

altho i've had no reactions --rashes etc i don't feel it has made very much difference

questions

does it help with pain?

or is it supposed to help with fatigue?

or both

i ask these because i was originally given it to help with fatigue originally with diagnisis of sjorgrens--i and my husband have mentioned that fatigue has not improved-nearly everytime we see consultant and altho she will say rest as much as poss don't overdo things she gives nothing away-i don't expect it to go away completely--but neither of us have seen any major improvement with the fatugue---i know from your posts that fatigue is a big factor with RA/sjorgrens--but it would help me to know your experiences

i am assuming that as part of a combination therapy it works very well

my meds haven't changed much over the 2 years--naproxen/co codamol/hydroxy--until recently when my new consultant---been seeing her for 6 months now--tried sulphasalzine --altho i failed--bloods went wrong---i had noticed a diffenence in pain relief--so i assume that she is keeping me on hydrox for comination therapy

i have appointment on friday 8th so i will need to make alist of questions i think.

would appreciate your comments

take care everyone

cazx

Hi Caz
Im ceri diagnosed last year currently on methotrexate injections but have never been offered anything else so dont know about hydroxy sorry... I do hope they sort you out on Friday as theres nothing worse than coming away from long awaited appt without any answers! Like you I really wish there was something for the fatigue as its not always possible to rest!
Anyway good luck Fri hope you get some answers xx

Hello Caz

Thought I would post what I was told.

I'd been on sulp...... (still can't spell it) for nearly two years and then a consultant at the hospital decided I needed something else added. I was given the choice of MTX or Hydroxy, I just about made my mind up there and then what I was going to do but told to go away for a week or two, do some research and then see specialist nurse with my decision. I really didn't want to start MTX, I had read lots of post about bad reaction to the drug and was frightened of taking it.

I googled about Hydroxy, read up about it and the only thing that worried me was regarding your eye sight. From what I read damage could be done to your eyes when taking the drug. I spoke on the telephone to the nurse and she told me that I would have to have my eyes tested before I start to take it, then I would have to have test done on a yearly basis and I would also be given a chart to test my eyes myself at home to detect any early damage. This did put my mind to rest but she then she told me that the Hydroxy would only be of any help to me if my main problem was fatigue, but if it was joint stiffness and pain then MTX would be the better option. So I ended up taking MTX which I will add up to press, I have had no side affects at all.

Now this was said to ME, with her looking at my medical history and we are all different and respond different but I hope it helps in someway.

Paula x

Hi Caz, sorry you are feeling so bad and hope you get things sorted on Friday.

I have been on mx and hydroxy for a year now and recently have had leflunomide added. This "concoction" seem to be working thankfully, however, I have always been told by my rheummy nurses and consultant that dmards ie mx hydroxy etc are not painkillers and you still have to take them regularly to keep up the pain control. I must admit I found that difficult to do as am from the brigade, if it doenst hurt, dont take pills!! With regards to fatigue, I think it goes hand in hand with RA and unfortunately, the name of the game so I ve been told is to pace yourself. Again, really difficult to do, especially in the early days when you;ve just been dealt this blow of having the disease and coping with the unknown.

Take good care and be kind to yourself, let us know how you get on at your appointment!

love Heather xxxx

HI Carol,

I was put on the triple therapy 3 years ago, and yes I came out in a rash not sure which one caused it but they were all stopped for a week and re-started the next week. I have had no problems ever since. I have not even had pain killers in the last 2 3/4 years. Other than the odd one for any ache I may have which is normal. So I presume they must be doing something. Again I swear blind my Mangosteen works for me too. Even my doctors at the surgery say I surprise them how well I keep. It has to be the combination and my positive nature. Hope it helps you too, thinking of you. Lorna x

Hi all. i went on hydroxy last oct. and mtx was added in the spring. I've been fairly lucky and my inflamation levels are low. However I'm getting a bit worried at the moment. I have dry eyes and the right one has been painful intermittantly for several weeks. My GP gave me different eye drops which help a bit but it can still be tender . I know hydroxy can affect the eyes so I did a bit of research on line and discovered a link with hearing loss. I've been aware that my hearing hasn't been so good over the last few months. I thought about asking my GP to refer me for a hearing test but, to be honest, I felt embarassed to be pestering him for yet more referals. However the last few days my hearing has been like listening underwater - but only in the afternoons?!! Anyway I paniced a bit, rang my rheumy helpline and left a message (no answer yet) and stopped taking the hydroxy.

has anyone else come across this?

Just hoping that I am panicing about nothing. Sue