Feeling pressured to start taking methotrexate. Is it worth it? How have others found it?

[Kdobbs]

I'm in my early thirties and have had RA for 6 years. Have been on sulfasalazine for 5 and, for the most part, it keeps my arthritis under control. I feel well, quality of life is good, work full time in a busy, stressful job and feel like I want this to continue and feel 'normal' for as long as possible. However, my rheumatologist has suggested that my condition is "more active" than she would like and wants me to add methotrexate to the dose of sulfasalzine. I would like a family at some point and know that methotrexate can affect fertility and reading about the way some people feel on it scares me. I don't want to tip the balance and feel ropey by starting on it, but feel like I should trust my doc. What have peoples' experiences of MTX been like? Is it worth the side effects, etc? V uncertain about what to do.

[Ronnie63]

Hi

I've been okay on it, the only side effect is on my liver levels which show up in blood tests when I'm on the higher dose. Have they indicated what dose they envisage you being on as it it's fine tuning your treatment it might not be much in which case side effects are probably less likely. Penty of people manage fine on it so don't be put off by what you read as we're not necessarily reflective of the majority experience. It's worth a try........

All the best

Ronnie

[miss]

Hi i would agree with Ronnie if it works it can make quite a difference. For me it has really helped. Like you i was not keen to take it. Now pleased i took the plunge the ability to function normally is fabulous. xxx

[trish1957]

Hi I was only diagnosed with RA in February this year and im on 20mg of MTX a week. I can honestly say I have been fine with it and had no major side effects. I was really nervous at first but so far so good.

Trish, x

[jeanjack]

I was on sulfasalazine for 3 years then they stopped working so Rheumy added MTX three months ago and I am now back to my normal self. I too was very scared to take them as I had read about so many people having had a bad experience but I have been okay and they worked pretty quickly for me. Felt the difference in just a few weeks. I am now on 20mgs.

So I would say it's worth giving them a try.

Jean

[helixhelix]

I'm on MTX, Sulpha and Hydroxy - but I really feel that it's the MTX that has made the big difference, the others just help at the edges. And side effects are fine. The first few weeks were a bit rough, but since then it's generally been ok, and I've been on it for several years. But do talk to you rheumy about wanting to start a family. I know that you must take care not to get pregnant when you're taking it, and for a few months after - but I didn't know it had an effect on fertility? So maybe you need another conversation about whether better to have a baby first? Anyway, don't worry about side effects - after all you can always stop taking it. Polly

[Kathyfitz12 in reply to helixhelix]

Polly is right that you can always stop taking MTX but I recently had to stop taking it due to other health problems and my RA symptoms came back as bad as ever within a month. I agree with linbin that you should thorougly investigate the fertility situation before you decide on anything - but maybe babies first MTX next? Good Luck whichever choice you make........kathy

[Hidden]

I agree with Polly. The part of your question about maybe wanting to start a family concerns me the most so this needs careful planning and consideration. Apart from that methotrexate is generally well tolerated and very effective. Tilda

[linbin]

Hi. I have only been on the MTX combined with Sulphasalazine and Prednisone for a few weeks now. I can tell you I was really worried about taking all of this medication. But i bit the bullet, and although it's early days yet, so far so good. I opted to self inject the MTX. I have so far (touch wood) suffered no significant side effects.

As others have said, wanting to start a family has to be a prime consideration for you and I would get as much information and advice from consultants, pharmacologists, rheumy nurses as possible before making a decision. Always remember, its your body, your life, and ultimately, your decision. Take care now.

X

[Kdobbs]

Thank you all for your responses. I feel a little reassured. Will do some further research re: fertility before I make a decision. x

[Ellenkay]

I have met many people who have got on with mtx really really well and feel it has given them back their lives. Unfortunately, it made me as sick as a dog lol !! Good luck to you in your decision x

[classique]

I have been on Metho for 10 years along with other drugs but now on Enbrel as well as Metho. i find the injections the best as do not feel so sickly , i take 15mg per week and folic acid 3 times per week . all bloods have been fine for me i am past the childbearing years 55 now got my RA at 39. So hopefully you will get good results , i have not tried to come of it so cant really tell if it is working or not, I sometimes think albeit grudgingly that quality is what we should aim for when deciding our treatment Good Luck .

[elmtree]

Hello, I am in my early thirties too. I have had arthritis since I was a child but it flared badly in my late twenties. I was also on sulfasalazine then they put me on methotrexate 4 years ago. I was really worried too as it said it could affect fertility and I was just about to get married and that you can't drink alcohol and could make you sick etc. It is important if you want to try for a baby that you come off the metho for 6 months, which I did and then conceived straight away, no problems at all. I had been on the pill also since I was 16 so thought I would have loads of trouble conceiving. I can also live a normal life, also working full time and have the occasional drink (You will be getting your blood tests done regularly so any changes to your liver will be picked up early so don't worry about drinking occasionally). Also, I have never felt sick on metho until my dose was increased to 25mg a couple of months ago, I was fine on 20mg. Unfortunately, metho helped a little but my arthritis was still very active so I am also on Humira injections which worked wonders. (Enbrel did too but I had site reactions to it). Due to the time I just stuck with the flares I now have quite severe damage to my ankles, which now require a replacement so if your consultant suggests your arthritis is active I really would take them up on the medication they suggest as you might be ok now but it could damage your joints if it is active for a long time and you carry on being active. Sorry for the essay, if you want to know anything else just send me a message. Hope it settles soon for you. x

[Victoria-NRAS Partner Moderator NRAS]

Hi Kdobbs

I have just looked at what's known as the 'Summary of Product Characteristics' (SPC) for mehotrexate and it says that although there is thought to be an effect on fertility this appears to be reversible on discontinuing treatment. As they would advise patients to be off the drug for 3-6 months before trying for a baby anyway, this shouldn't make much difference. It is very important not to try for a family before being off the drug for 3-6 months however, as the drug can cause damage to the foetus if still in your system. If you would like to talk to us in more detail about methotrexate please feel free to call the helpline on 0800 298 7650.

Kind regards

Victoria

(NRAS Helpline)