How do people here feel on methotrexate

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As5567
As5567 Member Posts: 665
edited 13. Mar 2013, 05:42 in Living with Arthritis archive
I know there can be many side effects to this drug and everyone reacts differently to it. This is my first night in taking Meth at 15mg in about 6-7 years. So far so good, just feel like my face is on fire (warm to touch etc) and slightly upset stomach. All in all for the first dose I'm pleased. I also take an Anti-sickness before the meth so that takes care of any nausea.
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  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    been on Mtx since 1998 on 25mg now , used to have problems with liver results but since being on six 5mg folic acid dont have any side effects at all , mtx is a great drug if you can take it
  • stickywicket
    stickywicket Member Posts: 27,714
    edited 30. Nov -1, 00:00
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    I feel good on it and have done for about 12 years now. I'm now on 15 mgs but was on 22.5mgs for a long time - oral, not injected. I take F.A. twice a week and a stomach protector twice daily as my tum is dodgy since years of anti-inflamms. I never feel sick with it. I've always taken it with food. The only slight 'side-effects' are the occasional very tired day the day after my meth or the day after that and probably a few more hairs on the pillow than previously. I've come off it twice for replacement joints and gone back on again still with no ill effects.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
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    it was hard the first few weeks, but its fine now, i was getting groin abcesses the first few months too but that seems to have stopped now
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    Seem to feel ok today after taking my meth last night, just feel really tired and drugged up head feeling (Slightly like hang over, that’s what many think Sundays are for anyway lol) Other than that only noticeable side effects is a blotchy face which I hope will clear in a few hours and a burning sensation in my chest.
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
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    I've been taking it for six or seven years, only side effects have been a bit more tiredness the day after, and occasionally the runs. This is providing I keep it at 20mgs, my Rheumy keeps trying to increase it to 25mgs and once 30mgs, then I get real problems, mouth ulcers, headaches, sore throat, dry cough, nausea, you name it, I get it :lol:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I don't have any trouble with it apart from the odd burst of extra tiredness but I always feel better in myself if I have to stop it due to a sore throat or other inection. I don't, alas, get those anywhere near often enough. :wink: Try not to sit waiting for stuff to happen, it's better to forget you've taken it and get on with your normal Sunday stuff (to which end I'm off out for Sunday lunch in town so I'm home in time for the next wugger match). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    More than 24 hours later after taking my first dose of meth, tonight I'm almost at the point of calling the out of hours gp I feel that bad. I have been sick twice tonight despite taking my anti sickness medicine as advised, I have a very horrible spinning sensation and feel very hot, also have a very bad headache and a sore throat. I did take meth years and years ago but I was forced to stop it due to side effects and blood results. I'm guessing that it just doesn’t agree with me.
  • stickywicket
    stickywicket Member Posts: 27,714
    edited 30. Nov -1, 00:00
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    I think you need to call your rheumatology helpline for advice here if you think this is the meth and not a bug of some sort. Our experiences are no use to you in that situation. You need the medics’ advice.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
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    I'm with Sticky here, I think you need to get your rheumy to check this out asap and work out if it is a side effect issue or a bug, a blood test should show it all. I've never had any problems with meth, it has been a wonder drug for me and given me a new lease of life with just some mouth ulcers and hair thinning to deal with in terms of side effects, both of which can be sorted with folic acid. Sore throats are one of the 'let them know fast' issues so if you think yours is meth related then let them know fast. Good luck and let us know how you go.
    Hey little fighter, things will get brighter
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
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    Meth is a great drug, the side effects do wear off after a period. But I still get the odd upset tummy after 4 years of taking them.

    If you are having bad problems please speak to your RA nurse, I did this towards the end of last year and I think it saved my life! If the side effects continue, they may switch you to injections, I did this last year and it was the best thing I ever did!
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    Just a small update, I saw the out of hours gp that night and she sent me to the hospital to be looked at, they think I was having some sort of delayed reaction to the meth. My blood results also come back showing that my liver function was abnormal and advised I stop the meth. They made me stay in overnight to be monitored and gave me fluids and some medications to try and help things along. Still feel horrible today, the doctor told me it could be a few days before I begin to feel better.
  • stickywicket
    stickywicket Member Posts: 27,714
    edited 30. Nov -1, 00:00
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    That's not good news but at least they/you got on to it quickly. I hope something else can be sorted out for you asap.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    starting back on mtx with 15mg seems pretty high , know some consultants do it but include high dose of folic acid , myself had to come of mtx for a time because of high ATL (liver blood test ) results but increased folic acid sorted that problem

    would talk to your rhummy nurse/consultant about the problems your having before starting it again
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
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    I took my 2nd dose yesterday evening and have been fine except this afternoon I had a bit of an upset tummy for couple hours but it passed in few hrs and it seems fine at the moment so far.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hi As5567, how are things with you today? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lizajane10
    lizajane10 Member Posts: 16
    edited 30. Nov -1, 00:00
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    Hello all, 15 year old son with Systemic Onset JIA has been on methotrexate for 6 weeks, switched after 3 weeks from oral to injections (20mg). The switch seems to have got rid of the nausea (though he's taking Ondansetron to prevent that) but for the last 3 weeks he's suffered a bad headache for 24 hours. Does anyone else experience this and any tips? I see the Ondansetron can cause headache as a side effect! He can take paracetamol but isn't keen on taking yet more drugs. I also got him I think it's called 4Head, it's a menthol stick to rub on your forehead and it evaporates slowly and cools your head - he doesn't like the smell though! He reckons keeping busy and distracted is probably the best thing, rather than lying in bed thinking about it, but wondered if anyone had any tips.
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
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    Is your son drinking enough? It helps to take MTX with plenty of water. Otherwise you need to tell his rheumatology team and see if they suggest anything.
  • knitter
    knitter Member Posts: 5
    edited 30. Nov -1, 00:00
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    Hi Guys,
    Nice to meet you, although I wish we had less in common :)

    I have PsA - been diagonosed about a year now, also have widespread OA and slipped discs at the bottom of my spine. Well fast forward to last autumn and I just felt so ill - the lodine and amatryptiline just weren't really doing it for me anymore, so I went back to the rhuemy. Had loads of repeat tests including a further MRI, plus steroid injections which worked wonders, and have now just started on methotrexate - a smallish dose of 7.5 mg/week. I'm also taking folic acid the other 6 days.

    My only side effect to date is a dodgy lower bowel - I took the meth on friday and must have gone to the loo ten times yesterday afternoon/evening, and still feel a little fragile this morning.

    May i ask those of you longer term users of meth do the side effects lessen as time goes on? I realise as I step up my dose (it's planned to go up monthly up to 15mg over 3 months) that it may get worse first.

    Thanks, Knitter
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello Knitter, it's nice to meet you and I hope we can help with information and support. I too have PsA and in the early days of my treatment took tablet meth; I cannot remember what dose I reached but I developed a rash so that was stopped for a while. I now take the injected form but I have never had the tummy trouble you are reporting with either form. 7.5 is a low dose and your FA strikes me as a high dose (I take one 5mg tablet per week) but it can take time to find the meds and doses that suit. Good luck. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • knitter
    knitter Member Posts: 5
    edited 30. Nov -1, 00:00
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    Hi Dreamdaisy, thankyou for responding.
    Yes 7.5 is a low dose - it's one of the reasons i'm a bit concerned as hoped to avoid side effects until the dosage rises a little.

    I'm down at OT on friday, so shall ask my rhuemy nurse what she thinks.

    I think part of the problem is that I had such a great response to the steroid injection it reminded me of what I still consider to be the real me, if you know what i mean? I suspect i'm expecting miracles where there ain't any :) I'm just concerned that i may be swapping the pain and discomfort of PsA & OA for those experienced as side effects of the drugs. Early days yet though
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    hi knitter , gl with the Mtx , its a good drug if you get on with it , your FA is a bit high but when you increase your Mtx it will help a lot with the side effects

    I have been on 25mg Mtx for years & on same FA , stops the hair thinning & liver problems , been on Mtx since 1998 so dont worry to much
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
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    I was on oral 25mg for about 3.5 years, then I went in to flare again and got put on 20mg injections. The injections gave me far less side effects than the tablets ever did. However I am not taking any now. It worked like a wonder drug for me though for those 3 years, so it far outweighed the negatives.

    Best wishes
    Charleeh
  • knitter
    knitter Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thanks guys, I appreciate your support.
    Keeping my fingers crossed it goes smoothly!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I never responded to steroid injections (despite my doing all the resting etc) but everyone is different in what 'works' for them. As you said you are in the early days of treatment and it could well be that the side-effects will ease as your body adjusts to the drug but I don't know that, you don't know that and neither does your rheumatology team. It is very much a matter of trial and error until you find the right combination that works for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • knitter
    knitter Member Posts: 5
    edited 30. Nov -1, 00:00
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    Yes i know, i'm trying to be patient - it's not one of my strengths! I guess only time will tell