my first dose of mtx since being diagnosed and feeling lousy

saggyoldbagpuss Member Posts: 55
edited 2. Jan 2011, 11:15 in Living with Arthritis archive
Hi all

Had my diagnosis finally confirmed by the consultant and after many months of tests back in October. Confirmed RA with positive ANA tho, (marker for Lupus). Cons will monitor the Ana blood tests for now. Unfortuantely I got an infection so starting my meds for RA was delayed. In the meatime cons gave me some relief with shots of Pred (something) which was truely remarkable! Could get hooked onto that I must say. So now starting my RA meds. My first dose of mtx 7.5mg going up to 15mg over four months. Am also taking Cox2 daily. Got to say was deading the thought all over Christmas , initially Consultant wanted me to start on Christmas Day but GP confirmed I could leave it til Monday....So here I am 1 day into the side affects and feeling pretty x:( Lousy! I'ved got the most shocking headache, my eyes also ache and lots of nausea!!!!! Have decided to stay in bed today - I did try to get up earlier but felt dizzy and sooo heavy and weak am totally wacked!! Does anyone here have the same affects? if so how long before they subside?

Duvet hugging Bagpuss!


  • barbara12
    barbara12 Member Posts: 21,274
    edited 30. Nov -1, 00:00
    Oh Bagpuss
    Your poor thing, bet you are glad you left it till after Christmas.
    Sorry I cant help with the meds, but I just want you to know we are always here for you, and hopefully the side effects will ease very soon, and you will start to feel the benefit.
    Sending loads of hugs ((((((()))))
    Barbara xx
  • saggyoldbagpuss
    saggyoldbagpuss Member Posts: 55
    edited 30. Nov -1, 00:00
    Thankyu Barbara
  • RA2010
    RA2010 Member Posts: 21
    edited 30. Nov -1, 00:00
    Hi there and hope you aren't feeling too bad...
    I replied mainly because I have the same diagnosis (RA but based on anti-ccp positive as RF was negative! and SLE because ANA and anti dsDNA (apparently very specific to lupus) were also positive). I was diagnosed back in October and started meth on 1 Nov at 12.5mg increasing very quickly to 17.5mg within 6 weeks! I didn't many side effects though besides feeling a bit spaced out after that first dose, and feeling as if i had a cold coming on, then feeling as if I had diarrhea coming on, but neither amounted to anything. After a couple of weeks though had no side effects (well not obvious ones).
    One thing to look forward to (hopefully, because all these meds, just like the diseases seem to affect everyone completely differently) is that within about 2-3 weeks I felt so much better, and after a month had almost no pain at all, and definitely no inflammation!
    Bad news was that 2 weeks ago the meth caused bone marrow suppression and very low white blood cells, so now off it and awaiting next cons appointment to see what next (GP said they may start me again but on lower dose)! And I can feel the old pains coming back, especially in foot which was one place that never went away completely!
    What have they said to you about monitoring the lupus side of things? That is one thing I haven't been given much info on - just told they will treat the RA first as that is what is presenting symptoms now and is also the more agressive, but haven't said much about the lupus...
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    I was one of the lucky ones, reached the max dose with no side effects to speak of. Then, when I had been on it for 8/9 months I got mouth ulcers badly.

    Splitting the dose into half (i.e. half the dose twice a week instead of all at once) did hold it for a further 4 months or so, but it became so bad that I have had to lower the dose to 20mg a week and I am coping on that - just. I can feel them waiting in the wings, so to speak.

    I fear I will have to lower the dose yet more to get full relief and that will be a shame as it has worked very well for me for these 15 GP who is very good is monitoring it all and will refer me back to my Rheumatologist if it becomes necessary.

    It might well be that in the long run you are the lucky one, many of those who get the side effects to start with seem to find they wear off over a little time and they can continue taking it for years.

    Best wishes to you!
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Saggy,

    Sorry your feeling so rough flower and good idea to have a duvet day.

    I am with Annie there... used to have really horrible sickness and headaches, had anti emetics the lot but now not really effected by it too much. I do sometimes feel sick but only for a few hours and most the time its okish.

    Its a good drug if it work for you and I so hope it will. Rest up an hopefully tomorrow will be better. Cris x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am so sorry that you feel so rotten. Meth can work effectively, we do all vary so much in our reactions to it and it can take time for one's body to adjust. I hope you feel better soon and I hope everything settles down. DD
  • moodyblue
    moodyblue Member Posts: 15
    edited 30. Nov -1, 00:00
    Hi, can I offer my sympathy? I had the same trouble with MTX. It made me feel really ill - the nausea lasted for days. But the good news is that since I switched to injections I have no side effects at all, I feel much better. And as a bonus a lower dose by injection has the same effect as a high dose in tablets. Don't forget the folic acid too as that is supposed to help minimise the side effects.
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Hi bagpuss :grin:

    sorry you've had such a rotten time after taking your first Mtx. :roll: and I hope the side effects will settle down once your body gets used to it. :wink: and taking folic acid does help.

    Just like moddyblue I too eventually went on to Mtx injections and agree that it does reduce the side effects.

    Hope you soon feel better and that the next tabs don't have the same effect.

    Iris xx
  • saggyoldbagpuss
    saggyoldbagpuss Member Posts: 55
    edited 30. Nov -1, 00:00
    Hi RA2010

    My results were Positive RF and anti CCP and Positive on ANA !!!But Negative on DsDNa which is why i think they are monitoring me, Like you they want to treat the inital symptons that being the pain im in with my hands wrists feet and knees.

    I;ll be interested in knowing how your treatment goes as I;m now under the care of my GP until April when i next see the cons....

    Pleased to hear that after a couple of weeks you encountered no side affects got to say am not looking forward to feeling like this after every dose. hoping that my body adapts and can take without any impact. Headace there still today although not nearly as bad as it was, tummy still gripping and feeling sick although the nausea seems to come and go in waves. Feeling spaced out - i associate that with feeling like ive been hit by a bus totally wacked.

    Yummm! now that's a nice thought almost no pain would be a lovely feeling am soo looking forward to that......

    I do hope your tests improve quickly and that you don't have to go through too much pain beore you can start again.

    I wish you well and a painfree 2011

    Michele (aka Bagpuss)
  • saggyoldbagpuss
    saggyoldbagpuss Member Posts: 55
    edited 30. Nov -1, 00:00

    Thanyou all sooo much for you kind words and encouragement. I still feel groggy but not nearly as bad as yesterday so thats good....

    wish you all a less painfull 2011 and will stay in touch!

  • RA2010
    RA2010 Member Posts: 21
    edited 30. Nov -1, 00:00
    Hi Michele (nearly called you Saggy but just doesn't seem right!),

    Actually as many have said here, and I've read elsewhere if you have the injections they are probably better for preventing nausea etc, so if that continues then try that? And hopefully you can be almost pain free soon, with no side effects!

    Keep in touch with how things go with the GP as well as any lupus symptoms! Good to meet another crossover case!

    Another blood test tomorrow (feel like a pin cushion) to see if white cells have improved further! Haven't had much of the old pain back yet, but do feel twinges!

    Take care and hopefully those side effects head off before the new year!

  • cathhankin
    cathhankin Member Posts: 28
    edited 30. Nov -1, 00:00
    New on here so you won't have heard from me before but i totallt understand your situation.
    I was on methotrexate at 15- and came off it when i was 23 ( last year )
    Doing that injection was the worst thing ever for me. My dad used to do it for me, and i cried when he did it. then he would draw it up and leave it for me to inject, but even looking at that horrible colour made me want to be sick. Not to mention the side effects of having the drug. Feeling sick, headaches, terrible moods for a good few days. and by the time you recover u have to have the next lot !!
    i was on the highest dose for i don't know how long, but somehow i became allergic to the drug- which to me was a HUGE blessing in disguise as i just detested having the injection. My friend also takes the same drug and has the same sid effects. I used to think it was me being a softy but turns out its a common thing amongst mtx users.

    I have no suggestions for how you can beat the side effectsi guess you have to grin and bare it as we do with everything else we have lol.
    sorry i cant help but just wanted you to know you are not the only one having the horrible side effects, it effects alot of people, i guess i was luckily being able to come off it and find and alternative x x x
  • alarkra
    alarkra Member Posts: 213
    edited 30. Nov -1, 00:00
    Hey Saggy!

    Ugg, that's just so pants that you've had a bad start to mtx. I have been on it for nearly 5 months now and when I started I just was high as a kite for a good 2 - 3 months as the doses incremented (which isn't as fun as it sounds as the lack of control of knowing what was going on around me was rather unnerving). I stuck with it in hope that it would settle down. And to date it has and I'm not floating on the ceiling all the time. However, I do have days with hot flushes and I always ensure that I take it once I've eaten a big breakfast to minimise feeling a bit off colour which always happens and so it can take 48 hours to feel 'normal'.

    I do hope that the symptoms calm down for you over time. Here, add these to your bucket and use them when you need them (((HUGS))) x
  • Cez
    Cez Member Posts: 46
    edited 30. Nov -1, 00:00
    Sorry to hear you felt so rubbish after your MTX. I dreaded taking mine when as i knew about the side effects, especially as i was put straight on 15mg with no titration, but *touch wood* i'm about to take my 3rd dose and all i've suffered with so far is a little heartburn.

    Perhaps your doctor could prescribe some anti-sickness drugs to make the first few weeks more bearable, hopefully then things will settle down as your body gets used to it. Drugs like Ondansetron and Metoclopramide can be very effective and as they can be taken on a 'when required' basis, you've no need to worry about adding to your (no doubt ever-extending) medications.

    Feel better soon x

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