What to expect from Methotrexate...

LemonMerigue
LemonMerigue Member Posts: 62
edited 11. May 2015, 15:09 in Living with Arthritis archive
Hello! Just looking for some anecdotal experience or advice with Methotrexate.

I've been started on 6 x 2.5mg Weekly and 1 folic acid per week. I took my first dose this Monday. I've been feeling.....different. For want of a better description. I don't know whether it's caused by fatigue or the MTX. I just feel very lethargic (more so than normal) and like I'm not really 'in' my body (as odd as that comes across! haha).

What's your experience with Methotrexate!?
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Comments

  • Frumpyshoes
    Frumpyshoes Member Posts: 12
    edited 30. Nov -1, 00:00
    I've been on mtx since early December? My experience so far:

    Started on tablets - after 2 months no response so switched to injections and dose increased to 25mg. Within a week or two swelling and inflammation started to reduce. Although I started with one folic acid per week, I now take six days a week. Mtx makes me exhausted for at least 2 days and I get chronic headaches for 4 days after each dose. Don't be freaked out by this, most people don't seem to get headaches!!

    Never had any sickness or gastric problems. Recently had a week off mtx to test whether it was actually working or if I had just got better. Not a single headache but by day 6 I was really starting to ache! Now back on it and waiting for it to kick in again - probably not a great idea but I just needed to know!!!

    I was freaked out about the thought of this drug but it hasn't been so bad and I would take the headaches over the pain (I have psa) so good luck - hope it works for you....
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    As an old-hand at this malarkey I would advise you not to expect anything because that way you may be pleasantly surprised. :wink: I take the injected form of meth and have no trouble with it whatsoever. Yes, I feel extra tired from time to time but have no idea whether it's the meth, my disease, because I've overdone things or the weather which is the culprit. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    My experience of meth is that it works and has done for about 15 years for me. I can't remember what dose I started on. I know I was on 22.5mgs at one point but have been on a holding dose of 15mgs for some time now.

    Different rheumatologists prescribe different doses of folic acid. I've always taken it twice a week. Some take it once: others six days. Its purpose is to mitigate against any side effects.

    The only side effects I've ever had are the occasional 'tiredness' day either the day after I take the meth or the day after that and, maybe, a hair or two on my pillow or in the basin after it has been washed. I wish you equal success.

    Oh and I've just read your post on 'Say Hello'. Of course the whole thing is overwhelming at first and an auto-immune arthritis is (unfortunately) for life not just for Christmas :wink: but life can still be very good. Mine is. I hope yours will be too :D
  • pot80
    pot80 Member Posts: 109
    edited 30. Nov -1, 00:00
    I have only been on it for four yrs now and had my initial dose of 15mgs reduced to 10mgs towards the end of last year. Folic acid the day before.
    When I started I used to feel a bit "detached" for a short while. I take my dose with breakfast and took a walk round the garden to clear the feeling.
    Their are many different theories about when to take the dose and being an
    awkward so and so I do what suits me right or wrong.I very rarely get a detached feeling now and methotrexate has done wonders for me and I still keep pretty active (I have a five mile walk lined up for next week and the garden is a constant slog) Yes, I get a bit tired but having seen the back of four score years I have no complaints as I am doing things that I could not otherwise do.
  • AnnaMilton
    AnnaMilton Member Posts: 44
    edited 30. Nov -1, 00:00
    Hi, I have recently started meth 10 mg and folic acid 5 mg except on the day of meth. Currently I am having a bit of metallic taste and nausea. But they are manageable. I am yet to observe any difference in terms of fatigue but I will stick to Meth for 3 or 4 moths more because I know this is the drug I can expect wonders.
    Hope you get on well with meth too. Just follow your folic acid as per your schedule, it will help you sail through sides of meth.

    Anna.
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi from me too and welcome to the forum. :D

    I've been on Meth about 18 months now and it really has helped. I started on tablets but it really made me sick. They switched me to injections (20mg) and now I have hardly any sickness at all. I do feel extra tired for the couple of days after taking it but nothing too bad.
    Really hope that you manage well with it and that it helps you.

    Best of luck and please keep us up to date with how you are going on.

    PS... Loving the name :lol:
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello and welcome from me..
    Sorry I can't advise, but just want to add my support and wish you well on the Meth..
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    Thank you all for the replies! I'm quite pleased to learn that fatigue *seems* to be a side affect of the meth. I wasn't sure if I was having an especially cruddy week. I've taken my first folic acid today so maybe I'll perk up a wee bit?

    I haven't really felt any benefits from it yet (I didn't expect to after a week though anyway). Fingers crossed though. I'm worried they'll move me onto injections if the pills don't work. I'm a giant baby when it comes to needles! :roll:
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    tjt6768 wrote:
    PS... Loving the name :lol:

    Thanks :lol:
    I was eating lemon meringue pie at the time. :P

    *prays no one notices the typo*
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I was always told that it could take between two to twelve weeks (no matter what the med) before any difference to the arthritis might be felt. Fatigue is also part-and-parcel of arthritic conditions, we have to be careful not to overdo things and rest as much as we can. You may not like needles but please ensure you have your bloods done regularly, this is essential. I do my own injections but never watch my bloods! DD
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    Yes. My Dr said it could take anywhere between 3 - 12 weeks for anything to start really happening so I'm really not expecting miracles to begin with.

    I really do hate needles but I'm usually a very brave girl and just go for it anyway. I go, get a bit nervous and shaky but then I'm fine afterwards. It's odd though because I'm covered in tattoos and tattoo needles have never bothered me.

    I've done a lot of walking this week as well which is probably a contributing factor to the fatigue as well. Oops!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    To me tattoos and fear of needles does not compute! :wink: Meth can substantially reduce the immune system so you must ensure that you have a 'flu jab later this year (or sooner if required). What have you been told about the frequency of blood tests and the risk of infections? DD
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    It doesn't make sense to many others either DD! :lol: (myself included!)

    I'm currently having bloods done every 2 weeks (my next ones will be 8th April) and then reduced to 2 a month after this 'round' is complete and then eventually monthly.

    I was told it will lower my immune system so kind of worked out I would become more susceptible to infections/illness. When I read about meth and is side effects ect. It confirmed my theory.

    I hadn't even thought about flu jabs though.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    We are more prone to infection because we have lowered immune systems but it's been ages since I had a bug: I am an assiduous hand-washer and have anti-bac wipes and gel in my bag for use when I'm out and about.

    You will automatically qualify for a flu jab (I presume that a rheumatologist has prescribed the meth) so please check that your GP is aware that you are taking it. I fell through the cracks one year so please don't let that happen to you. My hospital has always advised me to stop the meth (and the other immune-suppressants I take) when I have an infection so that I can clear it quicker. I was on fortnightly bloods for years, now I am two-monthly and must arrange some! DD
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    Aah. Hand gel is my best friend. I only really get a couple of colds a year so I'm not too worried but I'll be extra vigilant.

    Yes, it's been prescribed by my rheumatologist. I had a drs appointment today and they were not yet aware of my diagnosis/treatment so gave the gp some details. He said that my rheumatologist would write to them with his notes etc.but could take a couple of weeks. I'll make sure I pester them (I'm quite good at that - perhaps it's why I had a relatively quick diagnosis. In the beginning they didn't really take me seriously, probably down to my age)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    From that last comment I suspect you are of the younger variety of human being :wink: I began my troubles aged 37 but my then GP hadn't a clue about inflammatory arthritis. Many (be they medical or not) associate it with older people, little realising that those in their twenties, teens and in early childhood can be affected.

    I'm pleased to hear you are already a hand-washer, keep it up! DD
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    You're correct on that front. It was 2 weeks after my 25th birthday when my joints became an issue. My gp just gave me all the opiates he could prescribe and sent me on my way. This was a pattern for a couple of months but nothing got rid of my problems and it went from being an achey back to nearly every joint but my elbows being an issue, very quickly. :( I'm at risk of going off topic so I'll leave that for now.

    Is there any other things I should be on the look out for? I know it can cause a mild amount of hair loss?
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    tjt6768 wrote:
    PS... Loving the name :lol:

    Thanks :lol:
    I was eating lemon meringue pie at the time. :P

    *prays no one notices the typo*


    Ooohhh... I could kill for a slice right now :lol: I don't care if it is 1.00 I'm hungry lol

    By the way. . I'm also on the folic Acid 6 days a week. I'm constantly feeling fatigued so don't know if the Meth is doing that to me :roll:

    Be well x
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    PS..
    The eu regulations recently changed the self injections to pens. I think it's ridiculous myself but it may be easier for you should you have to change from tablets at some point. Personally I preferred the syringes. And I'm quite sure that they must have been the cheaper option for the NHS. I reckon someone got a lovely back hander for that :roll:

    I'm also heavily tattooed :D the more the merrier I say lol.
    I was diagnosed with osteoarthritis when I was quite young but battled to get that diagnosis. I was repeatedly told i was too young for arthritis. . :x :x idiots. I got the rheumatoid diagnosis about 5 yrs ago at a guess. I'm now 46.. and feel about 86 lol

    Xx
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    I think I would probably get on better with the pens :). My dad has one as he's an insulin dependant diabetic so if I do need to be switched to injections I can get daddy to come and hold my hand! :lol:

    In a sense, I was lucky because my battle to get diagnosed was quite a short one (about 7-8 months - though it felt like years!), I know some have a right old time of it. I think if I had been less pushy and bothersome, I'd probably still be waiting to find out what the heck was going on in my body. I was literally at the doctor surgery every other day either in tears or demanding more tests.

    Like I say, the first few months, they just didn't take me seriously. Just stuck me on Tramadol and all sorts and said it'd go away with exercise and time. One Dr (who was supposed to be a joint specialist :?: ) also told me it was just sciatica! :roll:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The meth may cause hair loss, but there again it may not. Mine has thinned but that could be meth, age, or both. I'm not that bothered by it because I only see it when I look in a mirror and I don't make a habit of that. The FA helps to alleviate these kinds of things.

    I began my problems in 1997, and not in the standard way for PsA, but it wasn't until 2002 that I began with sulphasalazine, and in 2009 that the medical penny dropped when my skin obliged with psoriasis on my palms and soles. Now, when waiting in rheumatology, I see younger people strolling in and out of their appointments with ease, not a stick or joint deformity in sight. There is no doubt that doctors are much more on the ball now, and this has to be a good thing. As for the feeling tired, I can clearly recall the last time I felt awake and had some energy - it was October 2001, after an operation to remove an ovarian cyst. It was a pleasant feeling. :lol:

    There are two articles on the web that might be of interest: The Spoon Theory and There's a Gorilla in my House. They might be useful for your friends and family too, so they can better understand what you are dealing with. Mind you, my husband's read them and still doesn't get it. :wink: DD
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Energy :shock: :? :shock: :?: what's that? Is it a new legal high?? :lol:
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    Thank you DD. I'll have a look at those articles.

    With my PsA I had the joint problems before my skin problems arose. (That's a rare occurrence apparently - how special I must feel :wink: )

    My hair tends to fall a bit anyway due to the psoriasis and prior to that it was probably down to dying my hair (a lot). It's very thick hair though so it's not overly noticeable (I hope!).

    I wish energy was transferable. My 6 Year old has heaps of it!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    When things kicked off with me I had what I now know to be psoriasis all over my scalp - the GP who didn't recognise my symptoms of arthritis also misdiagnosed that as a form of dermatitis (which I suppose it was) but didn't give me anything to help ease it - she said it would clear by itself and it did. PsA is also 'supposed' to begin in the smaller joints such as the toes and fingers, mine began with my left knee. It's a complicated business. :wink:

    I was born with eczema and developed asthma aged 7. The arthritis is a logical development but still came as a surprise. :lol: DD
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    Up until December I don't think I'd ever had psoriasis, it just appeared over a few days. It was odd. I'd always been prone to eczema but it was never severe or bothersome.

    I think PsA makes up its own rules.

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