Methotrexate advice please!

jojo03

Hello all,

I've had RA since I was 18 and am now 46. I have a new consultant, who I saw in April, and who wants me to start Methotrexate. I was very reluctant to start it and he didn't seem very pleased about that! He asked me to have a good think about it and let him know at my next appointment, which will be in a couple of weeks.

I've read so many things about nasty side-effects that Methotrexate causes, and the fact that it's only effective in around 40% of people. Is there any way to control the side-effects? I still work, so I can't afford to miss days off because of feeling ill. I know some people on here have said that it floors them for a couple of days after taking it. Is there a way to take a small dose at first and gradually increase it to get your body used to it? Or do you have to take the full dose straight away?

Any advice will be greatly appreciated please!

Thanks,
Jo.

maria09

Hi Jo
I'm on methotrexate now in injection form called meto ject which ive been on for 4 weeks now
I was on tablet form for 5 months and never had a single side effect
You will also be given folic acid daily but not on methotrexate day
You will be checked regularly and start on weekly bloods then fortnightly then monthly as it can play havoc with your liver mine have been completely normal through out
You are advised not to drink whilst on them I have the odd drink now and then but not often
There is an information leaflet out there my rheumy gave me mine but you can download it from arthritis research website
It's not as scary as it seems some just don't get along with it and sometimes it doesn't help but with our conditions its a matter of trial and error to find what's best for you and what can work for you can be no good for someone else
I hope this helps I'm sure you will get many replies on here
Hope all goes well
Maria

trepolpen

hi Jo , been on Mehotrexate for 15 years , alot of the side effects can be controled by folic acid , it realy can be a very good drug for RA & with some of the new anti-tnf like the one I am on you have to take it along with methotrexate

not everyone gets on with it but that is no reson to not try it yourself & may change your life trying the new drugs

dreamdaisy

I am on the injected form and have no troubles with it at all.* I had to stop the tablet from because my forearms became covered in a rash, I thne had a break for a couple of years whilst other drugs were tried.

Possible side-effects have to be listed but that does not guarantee that they will occur. I read all my drugs leaflets once, then put them away. If something odd starts and carries on for a few days then - and only then - will I check them to see if any meds could be responsible. I'm amazed that you haven't been given meth before now - have things been reasonable OK for you during the past few years? DD

PS * When I stop the meth (and the humira) because I have an infection I always feel better in myself despite being 'properly' ill. I don't regard arthritis as being ill, to me it's more a way of life.

Susiesoo

I have been on methotrexate tablets for 2 years and I would advise you to try it. I started on 20mg and am now on 15mg weekly. I take them in the evening and next day I sometimes have nausea and feel a bit yuck and sometimes I don't. I don't think I've felt bad enough to have had a day off work if I had been working, although the nausea was worse to start with. It has eased, though is still there.

I asked about alcohol and was told to stick to Government guidelines. I imagine this depends on other medications one is on.

I was told that a sore throat alone is not a reason to miss a dose of methotrexate. I believe others have been told differently.

Although I have occasional flares I do feel the RA is fairly well controlled. One of my worst problems is fatigue which would be difficult if I worked, but I attribute that to RA rather than methotrexate.

I would seriously consider trying it. Do let us know how you get on.

Susie

dibdab

Hi there,

I take a low dose of methotrexate tablets which may be gradually increased. Nausea was a problem but the rheumy suggested spreading the dose over the day with food which has definitely helped. It's really a balancing act I guess- for me 5 good days a week are worth a couple of feeling a bit dodgy, but only time will tell if I feel that way forever!

It seems to me that whatever we take has potential side effects and life with arthritis is about weighing up the pros and cons and finding what works for you. Maybe it's worth giving meth a go, and if it doesn't suit after a few months walking away from it?

What ever you decide, good luck with it.

Deb x

petals

Hi,

I have been taking Methotrexate for 2 yrs and I can honestly say that for me it is a wonder drug. I dread the day when I will not be able to take it anymore. My pain level has gone down dramatically, I won't say I'm pain free but I am much better than I was before the Meth.

Side affects, well in the first few weeks I felt very tired the day after taking it, however, once your body gets used to it things settle down (hopefully) it has never been so bad that I have missed work.
I have had no nausea whatsoever, and no other side affects that I can think of.

You are weaned onto Metho over several weeks, steadily increasing the dose. I am on 20mg plus Folic acid once a week. You have to take them on different days so I take Metho on Wednesday and Folic acid on Friday then I can forget all about it for the weekend.

The only thing that I am careful about is during the flu season, I have a flu jab because our immune systems are compromised while taking Metho, also I stay away from people with coughs/colds etc.

The biggest pain in the bum is having to collect your prescription every 4 weeks as that is the maximum amount they will prescribe at any one time. Plus of course the regular blood tests.

Sounds like a palava but totally worth it (for me anyway) as others have said, it doesn't agree with everyone but if your ok with it, it's a God send.

Good luck, Petals x

destiny0321

i have been on methotrexate now about 10yrs now.
I started on a low dose & now i am on 5 x sunday & 5 on monday as well as folic acid in between & all this time no affects whatsoever.
My arthritis is getting worse so what they will do next i do not know i have
PsA &OA. give it a try it as been working wonders but now im am getting worse & more reliant on my wheelchair i have had OS for 30yrs & PsA for 10 yrs now hope all goes ok destiny

Suzylou

I am 33 and been on it for 6 years, amazing results and not had any side effects. Tablets for the first year and injections thereafter. You will be monitored every four weeks so if anything does happen they will pick it up quickly. xx

As5567

jojo03 wrote:

Hello all,

I've had RA since I was 18 and am now 46. I have a new consultant, who I saw in April, and who wants me to start Methotrexate. I was very reluctant to start it and he didn't seem very pleased about that! He asked me to have a good think about it and let him know at my next appointment, which will be in a couple of weeks.

I've read so many things about nasty side-effects that Methotrexate causes, and the fact that it's only effective in around 40% of people. Is there any way to control the side-effects? I still work, so I can't afford to miss days off because of feeling ill. I know some people on here have said that it floors them for a couple of days after taking it. Is there a way to take a small dose at first and gradually increase it to get your body used to it? Or do you have to take the full dose straight away?

Any advice will be greatly appreciated please!

Thanks,
Jo.

I have been on methotrexate a few times in my life, from what I remember you can build up the dose slowly to allow for your body to get used to it, personally I did get side effects at first for a day or so after taking the medication but this has more or less stopped now. As everyone has said above the folic acid is normally prescribed as a side medication which helps with side effects too.

As for the effectiveness of the drug....well there is only one way to find out if it's going to work for you, finding the right drug and the right balance can take some time, some get lucky the first time and other try many drugs with trial and error until something works for them.

Kittkat

Hello
I'd say go for it.Not everyone has side effects I am on 7.5mg at the moment no sides so far (although this is lowest dose).Good luck it really helps some !

DebraKelly

I have been on Meth for 4 years now, first tablets then injections and back to tablets again, I am currently at 15mg.

Meth is a great drug and done me the world of good.

Please don't worry too much about the side effects, we are all different in how we react to different drugs.

If you do get side effects these should die down in the first few months, but you need to give a chance to work.

You will probably ask to take a folic acid tablet after the Meth and this will help with the side effects.

I came off Meth in March and after about 4 weeks was practically unable to walk! I then went back on Meth a couple of months ago and I almost back to normal again.

I would highly recommend this drug, so please don't worry.
Please feel free to send me a private message if you want any advise.

polly123

Hi,

I started mine after christmas this year, and have built up to my current 20mg/week. Like others I take folic acid every day except meth day. I did have side effects of nausea/abdominal discomfort but have pretty much solved that by drinking lots of fluids for a couple of days after taking it - flushing it through to my blood stream quickly. Seems to work!

Good luck, Polly

Tubby

I have been on and off methotrexate for over a year. I didn't tolerate the tablets at all so now on injections. Find it fairly ineffectual (along with equally ineffectual sulphasalazine) but at least I don't feel sick with the jabs. I had a steroid injection earlier this year..... FANTASTIC but sadly something which is a rare 'treat' rather than a regular option as it brings its own issues. I really wish I had an alternative but at the moment I don't. Methotrexate seems to be one of the best options and many seem to like it, wish I did. On a positive note, the injections are really easy.

Boomer13

Hi Jo;

I don't think you should be afraid to try it; the medication has been in use for a long time and if your liver values are monitored and you have a problem, you can come off it. Likewise, if it isn't working or the side-effects are icky. For a lot of people it works very well and they feel much better!

I have been taking it for 7 months and have had some side-effect issues after a dose increase that are on the mend now. It's mainly nausea, feeling hung over, headachy. The proper pharmaceutical folic acid is the supplement to get.

I think you've got some good advice here. I started on a low dose and have increased over time and may have another dose increase coming up.

I don't think you need to be fearful of trying it, especially if your rheum thinks it would benefit you.

Best of luck,
anna

lavenderlady

have been on meth for 8 weeks now first 10mg then 15 mg with folic acid one next day, not felt much better tbh have had serious knee and elbow pain though, have felt ugh for the day after meth but no other side affects except feeling so tired I was tested positive and diagnosed with RA Lupus and Sjogrens, already having OA it knocked me for six as you can imagine all this from a swollen and painful neck gland has anyone else had this as the catalyst for being diagnosed with this?

Islaydoc

Hi, I am like Anna and was diagnosed about 8 months ago, the tabs did not work very well and a few months ago I was started on injections of methotrexate with sulphasalazine and hydroxychloroquine. The side effects are bearable and the pain is much better most of the time but I do get very tired.
Best wishes
Brian

polly123

I'm not sure how good I can expect to be? I'm still pretty stuffed in the mornings and during the night, although that is part of my OA in my spine as well as PsA, and my hands, feet and knees ache over the day, which makes me think there's still inflammation there, although not pain as such. I went to my GP but he was only concerned with giving me more painkillers which I didn't want/need. My plan is to wait until I've been at 20mg for a month (put dose up from 17.5mg last week) and then contact consultant and see what he thinks.

jojo03

I just want to say a big THANK YOU to everyone for your replies. It's always great to get people's own experiences on this forum, and it really helps. I'm still thinking it all through, but it seems like most people have found it to be a useful drug.

Thanks again,
Jo x.