New member - about to start using methotrexate

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lisburnmark
lisburnmark Member Posts: 10
edited 11. Mar 2017, 15:33 in Say Hello Archive
hi there everyone
I am about to start using methotrexate to treat psoriatic arthritis - can people suggest what i should do to prepare ?
Ive read that i should avoid drinking cola drinks - is that true ?
Is it just the day before / day of taking tablets / day after or is it a total avoidance of cola & fizzy drinks ?
Is there any other foods etc that should be avoided ?
All help & advice greatly appreciated.

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  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
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    Hello and welcome!

    I am new here myself and everyone has been so nice and welcoming.

    I have been on methotrexate for over 4 years. I've never heard of having to avoid cola or fizzy drinks, and although I don't drink them often I've never had any problems with any fizzy drinks. However, there is a theory that artificial sweeteners are bad for your joints, so perhaps they're worth avoiding anyway!

    I don't think there are any foods you should avoid, but I was always told not to take any NSAIDS (antiinflammatory medications like ibruprofen). However, my rheumatology consultant recently told me that it's fine, so now I don't know what to believe!

    You've probably been warned already to use contraceptives, as methotrexate can cause birth defects. You'll need to take folic acid on a different day, which helps with the nausea. And you'll have to go for regular blood tests, especially at first or when your dose changes. I have got my blood tests down to every 8 weeks now, except when my dose changes.

    In terms of side effects, it makes most people very tired, and people get varying degrees of nausea, but apart from that it's not a big deal. I was extremely tired at first but it gradually improves, as does any nausea you feel.

    I hope that helps and maybe reassures you a bit. Some people are scared of methotrexate because it's a cytotoxic drug (i.e. cell destroying), and I've even heard it called 'poison', but I've personally never had any problems at all and am grateful that it exists!

    Kay
  • rickyoleary
    rickyoleary Member Posts: 3
    edited 30. Nov -1, 00:00
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    Hi, I've been on methotrexate for a very long time (diagnosed at 4 years old, now 30, and would say about a good 15 years on and off I've been on methotrexate).

    I've had doses from 5mg to 20mg, I'm currently on 10mg (once a week) and taking it with Humira (40mg, once every 2 weeks).

    I then have 5mg of folic acid three times a week. I take it the day after methotrexate and every couple of days there after.

    I was very young when I started taking it and was told all sorts of horrible things, but truly without this drug I don't know where I'd be. It's the only drug that really has worked for me. With Humira (although methotrexate on it's own at a higher dose worked by itself) and methotrexate I feel 95% normal.

    Side effects are a funny one. I've been on it so long I don't know what's considered normal. I'd say I am tired far more than my friends, but I also sleep very badly a lot of the time and suffer with anxiety, whether that's related to methotrexate or not, I don't know.

    I've never been told not to drink fizzy drinks (in fact I drink quite a lot of them!) and never had any issues. Alcohol is a big "no no" apparently, but although I probably shouldn't say this, I do drink. Probably as much as a normal person my age. I was a big believer in enjoying life (and I still am), and alcohol was a big part of my social life. You'll have regular blood tests, one a month or every 8 weeks to monitor things. In all my years of having arthritis there is only a handful of times they've came back and the doctor has called me.

    99.9% of the time it'll come back, in my case, as "abnormal", but this is normal for me. Generally is there is an issue for me it's potassium levels, I'd then be given tablets for that and have a blood test a few weeks later and everythings good.

    I don't have any other noticable side effects. I am very pale, but my iron levels are fine and being pale runs in the family, so again, I don't know if it's related to methotrexate.

    In short, keep having blood tests and I hope it works for you as well as it has for me. :)
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