so ill on methtrexate

[crystal1]

im going to have to come of methtreaxte feeling so ill only been on it 7 weeks. but been on and off it three times injection form.anyone else had to come of it and why.

and did you just come off it

[Tillytop]

I am so sorry that mtx makes you feel so ill Crystal. It seems that it really does not agree with some people - me being one of them. I tried it twice, many years apart, for more than a year each time and just couldn't tolerate it, even at low doses in either pill or injection form.

I have heard others say that the side effects improve for them once they get used to the drug - and some people find that if their rheumatologist prescribes additional folic acid that can help too.

I wouldn't advise you to stop without speaking to your rheumatology nurse - but please be reassured that, although mtx seems these days to be the "drug of choice" for most rheumatologists, there are many other DMARDS out there. I don't know how far you are down the RA road and what other meds you have tried but, over the past 17 years I have taken many, if not most of the DMARDS, either alone or in combination and apart from mtx there was only one other which I couldn't tolerate - the others gave me no problems at all once I got used to them (although some of them made me feel very rough to start with).

So my advice to you would be to speak to someone in your rheumatology dept as soon as you can and explain to them how you feel and tell them that you would like to see someone asap to discuss alternatives.

Thinking of you.

Tillyx

[crystal1]

thankyou

[Hidden]

Yes I agree with Tilly - life isn't worth a bean if you are feeling sick all the time. I only got really sick once I moved up to 17.5mg and also take Hydroxichloraquine too and I think it was the combination of the two that did for me at the higher dose. It was foul though and I couldn't have carried on even to keep RA at bay.

As Tilly says there are other drugs there that you will probably get on fine with. If possible do it so you switch from one to the next seamlessly with your rheumy team supervising this rather than just stopping though so you don't have a period when you go back to square one with the RA. Good luck. Tilda xxx

[earthwitch]

If you are getting that ill with it, it could be what is classed as a hypersensitivity reaction.

I keep getting really surprised by how long doctors expect you to put up with horrible side effects of these meds before allowing you to give up and try another. I was getting a really bad hypersensitivity reaction to SSZ and my GP said to keep on taking it. In the end I just had to stop, and interestingly when I informed the rheumatologist, he was fine with my decision. Am glad I didn't take the advice of the GP now. I did try again, building up the dose slower, but it still didn't work. No way am I going to try a third time.

[Keana]

I was put on MTX after a high dose of steroids while a 'suitable alternative' was found. My consultant said it would take about 6 weeks to have any effect but after 2 I had a complete 'meltdown, pain, swelling and immobility so I stopped and relied on pain killers until my next appointment. I was then put on hydrochloroquine and within a few weeks I knew it was right for me. You are the only person who knows your body better than anyone, trust your instincts and go on until there is something that works for you.

[Clare-NRAS Partner NRAS]

Methotrexate takes time to build up in the body and can sometimes take up to 12 weeks to see the true benefit. Before just stopping any drug for any condition it is important to speak to your health care professionals as they will need to ensure they start you on something else as soon as possible. I would suggest you phone your nurse specialist at the rheumatology unit. You did not mention taking Folic Acid? Anyone taking MTX should also be on folic acid as it can reduce the nausea considerably. Read the article on the NRAS website;

nras.org.uk/about_rheumatoi...

if you need any more information call the NRAS helpline on 0800 298 7650 (UK)

[2169]

Yes I had to come off it 4 months ago as it was making feel so ill all the time, like I'd got the flu and had a constant headache, also had a permernant water infection. mind you I was on it for 10 years before that and had gone up to 10 tablets a week - yes i just came off from 10 to 0 and felt loads better for it.