Help and value your advice friends .

[Rockpool60]

I was off Hydroxy and MTX as had a face rash and coldsore and was given antibiotics.

I went back on Hydroxy and felt great..no joint pain and actually felt human and guess what had 'knuckles' and no 'swollen knees' and thought this was a breakthrough. An ANA test has been sent off and no results yet. I have had two 17.5 mg injections and wham...back to being sick, swollen knees and hands and could hardly walk..what on earth does this do to you. I feel I don't want to carry on with MTX and stay on Hydroxy. I am going to see my OT tomorrow and going to off load on her.. 1 year since diagnosis and not an improvement with MTX. What do you lovely people think? x

[allanah]

Think you should tell them what u told us!! And telephone the Rheumy helpline. Patients have an input into their treatment, words like partnership and the patient being at the centre of the treatment should be put back to them as you, the patient, felt better on hydroxy alone!

I would have that discussion and if they don't agree ask them the reasons why, that way u r informed and an equal part of the process?!

Good luck tomoro and ask to see the Rheumy nurse whilst u r there!

[Rockpool60 in reply to allanah]

Thank you Allanah. Just feel I am forever wondering what next with the symptoms and drugs. I phoned them to see if my results have come back yet..the usual 2 day wait or if worried phone your GP message..what a laugh. When you tell them anything I feel it is always...oh really..never heard of that reaction blah blah...the sulpha had me rushed to hospital with swollen intestines due to the allergic reaction so I think I am being marked as a 'worrier' :/ I would love to visit my cousin in Rhodes but feel I need to get medicines sorted first. My next appointment is with the RA head nurse and not even the consultant !!!

[allanah in reply to Rockpool60]

Sometimes though with RA if have found you have to be your own ambassador and go in their and tell them what's happening And what you want. I think they think on no whhen I go but when I was nursing I don't ever remember thinking that! And when you sEe the ot ask for their help as they will often act as a supporter for you or discuss your case with the team for you. Hope u get sorted out so you can get away very soon xxxx

[Hidden]

well if you can manage on hydroxy its not unreasonable request/ idea?

[Hidden]

I agree with Alison - it seems quite reasonable to ask to stay on Hydroxy only. I've come off it for some reason - not quite sure why. But if I have to come of MTX now I will ask if I can take it again. It's a firstline drug for Lupus you know and some people do find it works best for them for RA. I read about it on this site and asked my GP and consultant if I could add it in when they told me I needed a second DMARD. My ANA result took a few weeks to come home negative a few months ago. Tilda x

[Rockpool60]

Hello everyone,

After waking up with swollen knees and burning legs I have decided that MTX is not for me. I saw my OT today and told her that I felt so good just on Hydroxy and felt so so ill on MTX she is going to speak to my consultant and RA nurse and tell them. Feel so relieved.

Thank you for your support xxx gentle hugs xxx