hello im new to this: and have been reading the... - NRAS

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hello im new to this

lorrain profile image
11 Replies

and have been reading the question n replys for a few days now im due back to see my consultant next week n rather worried about him putting me on methotrexate even more so aving read about so many people wanting to come of it and was just wondering if there is anything else i should be asking to be started of on

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lorrain
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11 Replies
Dotty7 profile image
Dotty7

Methotrexate works well for lots of people with relatively few side effects. I take 20mg per week, and have never felt sick, or any more tired on mtx day than on any other day. It has enabled me to go from being crippled with pain on my sofa to back on my horse and generally being active. It's generally reckoned as the gold standard starting point drug because it is so effewctive for so many.

Lots of people are worried before they start taking it, because you have to have the blood tests and the warnings are so dire and the stories are so bad, but exactly because it is so potentially toxic you will be vwery carefully monitored. You have nothing to lose and potentially very much to gain.

Good luck,

Dotty x

Hi there,

I'd like to know how many people in the UK take methotrexate - there must be absolutely thousands! Yes it is a potentially toxic drug & as Dotty says you will be monitored so any potentially serious problems with it can be nipped in the bud.

Sometimes I feel like posting to say how good I'm feeling but there's perhaps not much point in doing that again & again. Health forums are always going to focus on the difficult times more than the good ones & that's great because of all the support on offer but it can give a very skewed picture of what to expect to those who are newly diagnosed.

I'd say don't be scared of Methotrexate, it has been used to treat this disease for many decades so it is very tried and tested & it can work extremely well. I take 25mg weekly without any problems. I don't like taking it, I wish I didn't need it but it's not scary any more - & I'm someone who used to agonise over taking a couple of aspirin for a hangover!

Good luck to you, Luce xx

Dotty and Luce have said it all but just to re-iterate that the people who come on here to fret about Methotrexate (MTX) are most probably a small minority compared to those who take it and either don't have side effects or find the side effects far less alarming that the prospects of uncontrolled RA. The most recent person who has wanted to come off it on here has been on it for five good years and is only now finding that it's no longer doing the job and is also making her feel sick. I don't think you should worry about these downsides until you experienced them for yourself - which you may well never do.

I do have some side effects, mostly gastric, but I'm now taking it by injection for this reason and I think the side effects only started for me when another DMARD was introduced as well as MTX. Anyhow I have found respite from the nausea by increasing my folic acid dosage at the rheumatologist's instructions. I am feeling fine this week and am basically indebted to this medication for giving my back my life. If I winge about MTX sometimes (which I do) it's only from the rather luxurious position of be almost pain free now. It is generally a very well tolerated drug and you will be well monitored once you start taking it. Good luck and welcome to this site too! Tilda x

lorrain profile image
lorrain

thank all for taking the time to reply to me its very much appreciated im sure i will be ok as you all already know its a scarey and painful time once again thank you xxx

shirlthegirl profile image
shirlthegirl

Hi i am new to Methorexate and have had great result in the last 6 weeks since i have been taking it, I also would just like to welcome you to this friendly site, and hope that you also get great results to, take Care XX

lorrain profile image
lorrain in reply to shirlthegirl

awe thats great news thank you for letting me know xxx

Josie2 profile image
Josie2

I couldnt tollerate mtx, unfortunately, but dont let me put you off, there are so many people who have been fine on it.

Hope you get sorted soon.

Jo

xxx

Dogrose profile image
Dogrose

I know someone who works in rheumatology research who has seen thousands of patient notes, who told me some people have been on MTX for literally decades with good results and no side effects, you only tend to get the worst news here, it's a bit like a Misery Club sometimes LOL.

XXX

lorrain profile image
lorrain in reply to Dogrose

lol thank you must admit im abit more optimistic now i go back on tues been really bad for 3 months none stop now and really hoping to get back to being me again now think im ready to try anything lol xxxx

PJ68 profile image
PJ68

Hi and welcome!

I started on Meth tablets in October 2010, I didn't get on very well and in May 2011 it was suggested that I inject my dose - I am petrified of needles, but have learnt to deal with this.

I have not had any problems with the injections and also inject Cimzia (Anti-TNF).

My one piece of advice for you is to buy a note book - write everyting down - good days and bad days and any activity that you are doing on those days - it helps to mention it when you go for appointments, as I kow I forget to mention things that could be useful for your consultant or nurse.

Oh and my other bit of advice is to keep posting on here - there are so many lovely people who can help and support you!!!

Take care

Pen :)

lorrain profile image
lorrain in reply to PJ68

hiya ye her does seem nice people on here and is nice knowing we are not alone in this injecing is a scarey thought ake care xxx

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