adding methotrexate - so scared, need some reassurance :(

peridotlouise

im adding meth to my sulfasalazine on monday...
i am so ridiculously scared about taking it. just reading the side effects page makes me want to not take it
does anyone get on with it ok?
argh im just so worried and literally broke down crying when i saw my rheumy today, she is happy ive decided to take this with my sulfa as apparently combination therapy works better than just taking the sulfa. my rheumatoid factor and anti ccp is so high. i wish i could run away and not take it and everything be ok again.

Mat48

Hey please don't worry so much PDLouise. I've been on Sulpha last year and couldn't take it - had a really bad reaction and had to come off it so was dreading the Methotrexate but I've been on it since start of December and am doing really well. Only side effect - and it could be just life at the mo - is depression and fatigue and they aren't listed on the MTX sheet so may just be me. But other than that I'm feeling really well - no hairloss, nausea or mouth ulcers and the scary life threatening side effects are the ones that you will have regular blood checks for so you can feel well monitored on this drug. My rheumy said I should stop worrying and dreading side effects (especially hair loss) because if I worried that much they would likely happen and they really haven't at all so please stop your fretting! If they do happen you can just stop taking it and try a different DMARD. I'm only on one DMARD and think if my RA was worse I'd be quite bothered because combination therapy is the way to go all the literature and guidelines say. Good luck! Mat x

mp1952

hey PDLouise


I was very worried sbout taking MTX too, but its a great drug and I have had very few side effects. I take 15 mg by injection on a Friday night and on a Sunday I do feel tired, so make sure i have an 'easy' day on Sundays. I just had a bit of thinning of my hair for a few months but that didnt last long. I did try 17.5 mgs but that made me feel very nauseous, so I know my 'limit' is 15 mg..



Marion

dreamdaisy

It will all be fine but if it isn't you will be taken off it. It is best to be aware of possible side effects but please try not to sit there waiting for them to happen. Perhaps take the dose at night so you can settle down to sleep? I do my humira jab last thing as I find it quite a trial and snuggling down after is lovely. I do my meth via injection too and I rarely have any trouble, just the occasional bout of extreme tiredness. My hair is thinning but there again I am 53 and have 'done' the menopause, so who's to say it isn't that? I don't care anyway, I've never had lovely hair! It will all be OK, Louise, please try not to fret as that will only make matters worse. I wish you well. DD

barbara12

Hi
I am so pleased that people have taken the time to post how they have got on with MTX it is so encouraging to read positive post.
Sorry I couldn't help, but I do wish you well with it.xx

peridotlouise

thanks everyone
i'm just gonna take it tomorrow and see how it goes... i keep forgetting that if it does all go wrong, i can always be taken off. hope it goes ok though.

tjt6768

the very best of luck with it mi dear... Hopefully you will be fine and it will help a great deal..
I'm still on sulfa for the time being but if it continues to make me lose more weight the rheumy said that the meth is next in line.. I'm fine with that, what has to be, has to be and if it helps, then... No contest..

Let us know how things go?

emsjane

I have been taking MTX since November in tablet form. I started off on 10mg and i didn't feel it had made much difference. The rheumy increased to 15mg and i did experience a bit of dizziness and nausea. So i reduced back down to 10mg for a couple of weeks, ive just taken the 15mg sat night, definitely take it in the evening before bed, so i will see whether i am ok on the increased dose again. I haven't had any hair thinning that ive noticed, although i have quite thick hair anyway. I do feel tired, but im not sure if that isn't just the Arthur!!

It is well worth giving it a go, i do think it is helping my arthritis, but i didn't notice any difference for the first 12 weeks so u must persevere with it.

Good luck

stickywicket

Good luck for tomorrow, peridotlouise, though I doubt you'll need it. I've been on meth for over 10 years and no problems. Remember you'll be very well monitored.

DebraKelly

Meth is a great drug I have been taking it for a couple of years now, first by tablet and now by injection.

The only major side effect that I've had is my hair thining and tiredness, but tiredness comes as part of the disease anyway.

If you experience problems with Meth then you can always ask to switch injections as I have have had no problems with these.

Remember to take a folic acid tablet the day after.

Hope it goes well for you.

ironic

Hi,
I can well understand you being nervous starting mtx I was just the same. I started on 10mg and built up to 17.5mg. I have been on 17.5mg for 9 months now and I have had no hair loss.
My RF is very high too and I have found that mtx has helped control my RA. I dithered for a long time and have some damage to my hands so in hindsight I wish I had started it sooner.

We are all so different with meds and I will be honest that I have had some sickly times but others have had no problem at all, so why shouldn’t you be in the latter category?
I find mints help if I am feeling a bit off, others have sips of ginger and one of our lovely ladies recommend ice lolly’s.

You will be well monitored and don’t forget you can ring your rheumy nurse if you are at all worried. As others have said it does take time to start working for you so be patient with yourself. I take mine on a Sunday night so I can have a rest Monday or Tuesday if I need too.

Good luck for tonight flower, it is normal to be nervous, so don’t beat yourself up about it. I will be thinking of you.

I x

Scarlet

Hi peridotlouise,
I have been taking methotrexate (10mg per week) for the last 3-4 years and can honestly say I have had no side effects in that time. I take it just before I go to bed, the first few weeks I took it I felt a little bit sick when I woke up, but nothing really bad. I was on sulfa and it really didn't help me, whereas the mtx made a massive difference...hardly anyone at uni or work even knows I have arthritis. I am currently increasing my dose up to 20mg, and other than tiredness, I've had no side effects (although the tiredness could be down to me being in my final year of uni...too many late nights working on my dissertation!)

I understand where you're coming from when you say you wish you could not take it and everything be ok. I don't like being on mtx, because I hate the idea of taking these drugs for the rest of my life, but mtx has made such a difference to my life I'd be mad not to take it.
I hope it works out for you, please let us know how you get on :-)

dreamdaisy

Hello you, have done the dread deed yet? I am thinking of you and I hope all is well. DD

peridotlouise

hey everyone,
thankyou so much for replying ) you are all so lovely on here. it's hard when you don't know anyone who has this and even harder sometimes trying to talk about it to people as i find some people just don't understand... it's nice knowing i'm not completely alone
i took my first dose nearly an hour ago...fingers crossed i feel ok on them.

i'm really glad that some of you are doing well on this med.

hope everyone is well.

lots of love x

emsjane

Good Luck Peridotlouise I hope it works out for you!

You are so right about people not understanding and you will see that same comment over and over again on the Forum and I, for one, find it sooo
frustrating that people just don't get it and i often feel that they are looking
at me and think im just faking it!!!!

peridotlouise

emsjane - exactly how i feel...i was trying to talk to my manager at work about it today, but she looked at me as if i was contagious and changed the subject, really upsetting. and one of my friends, as lovely as she is and tries to understand no matter how much i try to explain...she just doesn't. she seems to think what i have is the same as what she has which is a bit of a pain in her knee when she overdoes exercise sometimes and all i can think is I WISH! so when i say how upset i am about it all, she just doesn't get it. as far as she's concerned, as long as i take my pills theres nothing to worry about 'because we all get something at one point anyway'. ha.

oh well!

Izzie

Hi Peridotlouise, I hope your still feeling ok with the meth, I cant give advice because I am so new to this but I can empathise with the wanting to run away from it all feeling, up until now I have just been on what seem like quite tame anti inflammatorys and painkillers compared to meth and I really would like to keep it that way but am now faced with this treatment too, as for ppl not understanding.. I honestly wish pain could be seen, when I try to explain this to my manager you'd think I was talking a different language and I usually give up when he has a stretch and says yeah I get a bad back a lot!!
Anyway I'll be watching how you progress and hope it all goes well for you.. good luck

emsjane

Izzie,

Don't worry about taking MTX, i was worried beforehand too and ive been on it since November and apart from a bit of nausea the day or so afterwards, ive been ok on it.

Each person is different, so it is worth a go and if you don't get on with it, you can always stop!