Su P

[SusanP]

Well .... now at the stage of taking Sulpha as before (6 a day.).All other meds are off., including the anti-inflammatory drugs. I was very ill and diagnosed with bleeding ulcer...RA Specialist waited till I had settled a bit and has now put me on Metho by injection.

2 injections done, folic acid taken in between and Hhheeyyyy im doing ok. Feel bit sickly etc just when taken it...and some funny pains, headache but nothing too serious. I really am hoping that this plan works and I get some more pain relief....don't know how long it takes the Metho to kick in, but will keep you all updated. Next Specialist Nurse review is tomorrow 3pm......blood levels checked tomoz as well as liver ....here is hoping.....

.....

[sylvi]

Susan it usually takes a few weeks before you feel the benefit of the mtx. I hope that things start to get better for you in the future. sylvi.xx

[SusanP in reply to sylvi]

WELL i HAVE TO SAY NOW AT WEEK 8 AND DOING OK..i have had some improvement and although I had a horrible flare up in my foot a couple of weeks ago, I am doing better than ever. Bloods this afternoon so will get results from last lot and maybe will only need to go to appointments for them every month soon..no illusions not miracle cure but it is better then I have been for 12 months so hoping for that miracle in the end...... finger crossed things stay level as they are now...hope you are all doing ok now the winter temperatures are upon us....su xx

[Hidden]

Hi Susan - I've just given myself my third MTX jab. Did you take it orally first or go straight onto injectable because of the bleeding ulcer? I find the secret with MTX is to drink huge amounts of water all the time. This seems to make a big difference to me at any rate and I think the MTX must dehydrate me a lot although I don't feel more thirsty but I spend quite a lot of my time coping with a foul taste in my mouth and the water seems to flush it away a bit. So maybe that would also help with funny pains and headache too? Good luck with blood test tomorrow. I don't have a specialist nurse just the practice nurse and my GP but my bloods were all fine a week ago and hopefully will be in 3 weeks time too. My GP would have liked me to get an extra test in this month but I'm away so he said a month between them should be fine same as I was having for the oral. Hope it works for you soon too but give it time if not. Tilda x

[SusanP in reply to Hidden]

Hi Tilda..how is it going?????

[SusanP]

Hi TildaT...I did take metho. orally for a short while, but it made me sick and when the mouth ulcers came I was taken off it.

I was then given it by injection because I was diagnosed with the bleeding ulcer. I have now taken 4 injections (last one last night). I am same as you and get really awful taste in my mouth and thirst too. My teeth feel furry most of the time and even brushing them fresh only lasts minutes. I drink different things but find tonic water (Shweppes) from the fridge is most refreshing in small doses. I have gone on caffeine free hot drinks as well and I am taking some vitamins B12 / B6 and milk thistle, as it was recommended by a long term RA sufferer.

I have my blood test tomorrow pm and hope the results are good so I can continue and get some of the fantastic benefits of injecting this drug...I hope you do to...keep me updated on your progress....Sue x

[Hidden]

Hi Susan, Sorry not to reply for over a month. I find it really interesting if I look back to posts like this because in my mind the horrid taste had stopped with injections but actually it never properly went away and is now back with a vengeance. I wondered if I was imagining it or if it was caused by something I was eating but if you have exactly the same experience of MTX - I think it must just be that.

I've been away a lot and now back but just started a new job so very busy. Are you still finding that the foul taste is an issue for you and do you find the MTX is starting to work on your RA affter this time (about 7 weeks I guess same as me?). I find that it's working more like I'm on a higher oral dose now. When I was on 15mg oral MTX I was still suffering a little from excessive stiffness and ache but now on the 15mg of injectable I find it's more like when I was up at 17.5 or higher in terms of my RA symptoms and so far my ESR has reflected this by coming down to 30 for two consecutive months. I will see if it's stayed there for another month or two and then am thinking of asking if I can reduce down to 12.5 and even down to 10mg because I'm finding the foul taste and being wiped out for a whole day a week is a bit miserable and wondering if I might be able to get away with less now. I read that from trials in 2008 - injectable MTX was found to be significantly more effective at controlling RA so I want to keep going with it if possible. I had a bit of a worry with my liver being raised last week but persuaded my GP not to write to my rheumy - that it was just a few drinks I'd taken while away on holiday. I think I must have an extra sensitive liver!

I hope the ulceration has now stopped and that the MTX is working well for you. Tilda x