Methotrexate side effects variable from week to week

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pinkteapot
pinkteapot Member Posts: 48
edited 23. Oct 2019, 13:37 in Living with arthritis
Short version: Does anyone else find this? Any tips for what makes the difference?

Long version:

Some weeks I can barely tell I've taken it (slight tiredness only). Other weeks I feel pretty grim for 24 hours afterwards (really tired, dizzy, tiny bit queasy).

I was dreading taking it this week because last week was a bit nasty, but this week's fine!

I've been trying to work out what the difference is (diet, water intake, rest, etc.) but can't see any clear patterns.

I'm on 15mg MTX weekly, and 10mg folic acid (taken as 2 x 5mg doses during the week). The consultant said the max folic acid would be 15mg/week, so there is scope to increase it by that last 5mg.

Overall, even one day of feeling unwell a week is still MUCH better than the pain I was in before as MTX is working perfectly for me (thank God, after a nightmare experience on sulfasalazine!).

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  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I wish I could help as you're really persevering with this where many wouldn't. All I get is the odd day of fatigue and maybe a few hairs in the washbasin after I've washed it.

    I presume you take your meth at the same time every week. Do you vary what you take with it in the way of food? A lot? A little? Exercise?

    I can only suggest you keep a little diary of all possible variables and look for ways of reducing symptoms when they happen (though I'm sure you'll have already thought of this) so that you can get on top of them asap.

    I guess you might have to ring your helpline and ask for that extra folic acid. I, also, take it twice weekly but I know some on here take it every day except meth day. You could also google foods that are rich in folic acid. I've a feeling greens are in there but not sure.

    Good luck :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • pinkteapot
    pinkteapot Member Posts: 48
    edited 30. Nov -1, 00:00
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    Aww thanks! I worry I've over-stated the side effects as I don't feel they're enough to consider giving up on MTX. I'm hugely lucky in that my arthritis is mild (seven years in, a few fingers and toes affected) but the flip-side of that is a drug has to (1) work and (2) have only mild side effects to be preferable to just putting up with the arthritis. :oops:

    That being said... Am I right in thinking that no drug will be completely free of side effects? That's why I'm putting up with this. If I 'fail' (I hate that that's their word for it) on MTX then next step would be biologics as they come after trying two different DMARDS, but from what I read they're not always an easy ride either?

    I do take it at the same time each week, with my evening meal. What I eat at that meal does vary completely, but I do try to make sure it's a good, large, stodgy meal!

    I will start making some notes on diet, exercise etc. to look for patterns more formally. I've only been keeping a mental note so far.

    And yes - hair loss is a side effect for me too. I'm shedding like crazy with lots coming out when I shower, and a general covering of the carpets all the time! I started with thick hair and it's not looking too thin yet, so I'm hoping it eases off before I lose so much hair it starts making me miserable. :roll:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I have the injectable form of meth and find that what you describe happens to me. Usually I have no idea I've taken it as I have no side effects and it's never reduced my pain but yes, I can feel extra tired on top of the usual and sometimes a little icky. My hair has thinned but I don't care, it was baby-fine to start with and is now 11mm all over so you can't really tell now you can see my scalp all over.

    These meds are strong but not everyone has side effects and some can cope better with them than others. Leflunomide gave me astonishing headaches so I had to stop that, cyclosporine made me incredibly hairy and enbrel tried to explode my liver but as the latter two didn't make me feel ill I wasn't bothered. It's good that the meth is being so effective for you, I've never had that feeling and I sincerely hope you can continue to tolerate it and the benefit continues. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BettyMac
    BettyMac Member Posts: 216
    edited 30. Nov -1, 00:00
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    Hi Pinkteapot

    (Waves to Sticky and DD)

    I’ve been on methotrexate for the best part of ten years.
    Initially it was the tablets and I was neither up nor down with them for a few years.
    After a while I started to get a lot of nausea - to the point where I was retching as I went to get them out of the cupboard.
    I did suspect for a while that the brand stocked by one chemist was better than another but this turned out not to be relevant.

    I had a break from MTX for a couple of years and the RA went from grumbling to screaming tantrums so they tried me on the injected version.

    Like you, I find that some weeks I’m fine - to my delight - and other weeks I’m nauseous for a couple of days.
    I used to think that upping the folic acid made a difference. One consultant had me on quite a lot. It doesn’t actually make much of a difference to me.

    I don’t drink very much alcohol, restricting my weekly units to about 4 at the most. I did wonder if taking the MTX too soon after challenging my liver with a G&T was relevant so I make sure there are a couple of clear days on either side of the MTX because that seems sensible.
    To be honest, it hasn’t really made much of a difference to the nausea.

    My latest experiment is to try to drink more water the day after the MtX, in the hope that it might flush things through a bit more quickly. I’m very guilty of not drinking enough fluids so it’s a bit of an effort as I usually wait for thirst to kick in.
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    BettyMac wrote:
    I’m very guilty of not drinking enough fluids so it’s a bit of an effort as I usually wait for thirst to kick in.


    Now there's a thought. I know pink teapot has said she driks plenty of water but it's suddenly struck me that what we regard as a lot or a little is very subjective. I'm not someone who carries a bottle of water everywhere but here's my liquid intake for the average day:

    On waking - 6 large gulps of water to take my omeprazole
    Breakfast - 1/2 pint mug of tea
    Mid-morning - large mug tea or smaller one of coffee
    Lunch - 1/2 pint mug tea
    Mid afternoon - large mug tea
    Evening meal - large mug tea
    Before bed - 1/2 small mug of milk to take cocos with

    I think, comparatively, I drink a lot of tea. Maybe that helps.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Jackie47
    Jackie47 Member Posts: 108
    edited 30. Nov -1, 00:00
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    Have tried 3 times with Meth. Twice orally and then injection. Ok for a couple of months then bam I’ve had bad reactions and taken off it. That’s me though as other meds have had the same pattern. If it’s too much of a problem it needs reporting. Good luck!
  • pinkteapot
    pinkteapot Member Posts: 48
    edited 30. Nov -1, 00:00
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    Trust me, I drink a lot of water. :D

    I drink 2-3 litres of plain water a day, plus 3-4 mugs of decaf coffee.

    I have no caffeine and next to no alcohol (I think I’ve had three drinks since starting MTX in May).

    Even so, I feel so dry the day after MTX so I now additionally down a Dioralyte morning and evening on MTX day and again the next morning. :lol:

    It’s hard not knowing whether there’s a drug out there that would have fewer side effects for me... Everyone must feel the same! On balance I think I’ll stick with it for now. If it were a daily drug I couldn’t cope but feeling rough one day a week isn’t so bad.
  • Kitty
    Kitty Member Posts: 3,583
    edited 30. Nov -1, 00:00
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    As a Mtx nut (I've been on it on and off for about 10 years. First 3 tablets a week then slowly rising to 25mg and changing to injections. Also added in Leflunomide. I had no problems with it except a little nausea. Then I had cancer treatment and chemo nurses said 'drop the MTX'. Although they were happy for me to keep taking Lef. After treatment I found I had become seropositive after being negative for 25 years and also diagnosed with Rheumatoid Vasculitis, Osteoarthritis and Osteoporosis. So I'm now back on MTX. 3 tablets weekly but for Vasculitis and not RD. But I'm still not having any side effects. But I feel I need more as RD is rampant. Or is it Osteoarthur or Osteop, or Vasc. Haven't a clue.So a MTX nut who is confused.com! :shock:

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • McGinger
    McGinger Member Posts: 6
    edited 30. Nov -1, 00:00
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    I take Methotrexate too and I find the same, I always take it last thing on a Sunday night as I find that if the symptoms are bad they are worst about 3-4 hours after taking it so that means I am asleep at that point, it also means I am defo taking it on an empty stomach.

    The next day I can be fine or can feel awful, the usual feeling sick, headaches, hair loss etc. The worst side effect I experience is visual migraine but that is very rare.

    I have noticed that the effects vary though depending on the brand of medication I get. I no longer use a certain pharmacy in my area as the brand of methotrexate from there made me really unwell for 24 hours after taking it, however the pharmacy I use now have recently changed their brand and I have felt fine after taking it!

    Its a strange one!
  • Basicquestions12
    Basicquestions12 Member Posts: 23
    edited 30. Nov -1, 00:00
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    I can relate to this thread a lot! I’ve found now that I’m on my maintenance dose of 17.5mg , I can feel the variability. I took my last dose Friday and was struggling with an eye infection and had mouth sores , which I have had before. I had people around me being unwell this week though (touch wood haven’t contracted yet!). I have felt rather queasy since yesterday, but I’m a night shift worker , so I would say it’s a lot to do with lack of sleep interacting with methotrexate.

    On the day of methotrexate I would drink more than 3 liters of water including teas and coffees. I find sparkling water can help the nausea. I also find a lot of carbohydrates helps also , which isn’t necessarily the most healthy thing! Someone on here had also recommended taking fish oil tablets , so I’ve been doing that every day apart from methotrexate. I would also never skip breakfast the day of or day after methotrexate.

    Just in terms of people taking there methotrexate, what gap do you leave between doses? At the moment I take 10mg at 10am on Friday’s , and the 7.5mg at 10pm evening. I find the nausea begins quite intense the second dose and would prevent me sleeping well.

    I would like to just say to anyone reading this , methotrexate has done wonders for my inflammatory arthritis and I’m now able to do the things I did before unrestricted. Although the medications aren’t the nicest , I am glad they have given me relief from the condition.