I'm now on Methotrexate

pepperflo
pepperflo Member Posts: 91
edited 7. Oct 2011, 13:44 in Living with Arthritis archive
Hi everyone, sorry, I haven't been on in a while, but haven't been feeling too great.
Well I have now started on Methotrexate, haven't had any relief from it yet, but its still early days, and it can take weeks to kick in or so they tell me.

Is anyone else on this medication, and if so how are they finding it as it scares the hell out of me, but I'm sure it will eventually do me some good.

I'm keeping the vampires at my docs surgery very happy with fortnightly bloods.

What I'm asking is, has anyone been to the Carribean while on these meds, as were hoping to book a cruise for our silver wedding next year, and not sure if we need vaccinations for this part of the world. They have explained to me that I can't have the yellow fever vaccine, but there is a substitute to take in its place.
So any advice would be gratefully received.

Comments

  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Hi,

    Can't help on the cruise front to be honest as hate boats.

    I am on methotrexate fir the second time, first on it's own now with Enbrel. You are right it can take up to six months to get into your system so patience us needed, hard for me as have very little. I am very lucky that apart from feeling tired I don't have any other side effects. Meth works differently for each individual and fir each type of arthritis as well. I am expecting them to increase my dose today. You will find many others on here on meth and I am sure they will comment soon. Hope it works for you and try not to read the horror stories on the Internet. Xx
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
    I have been on Meth for the past year or so and I have to say that I would not be able to function if I was not taking it.

    It will take a few months for it to get into your system so be patient, but it will be worth the wait.

    The only side effect I have had is feeling sick, but that has completely gone now, if you do get this, my best suggestion is to take a mint, or have a cup of tea with some plain rich tea biscuits.

    Its a great drug, but give it time to work.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have been on injected meth for a long time now and it's fine. I rarely have any side effects though I think it does generally pull me down, that's all. It can take up to twelve weeks to get into the system - are you starting low and building? I hope it suits you and I hope it helps matters. I cannot help on the cruise thing, I think your GP is the one to ask about that. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Stu69
    Stu69 Member Posts: 202
    edited 30. Nov -1, 00:00
    Hiya!

    Injected mtx for me too. I found the pills horrid - the side effects far worse for the tablet form than for the self-administered jabs but in context, when I say far worse, I mean the nausea and general malaise which for me, came about 12-18 hours later after taking the pills was not THAT bad to begin with, but it has been almost eliminated entirely by swapping to the jabs.

    I went to my rheumy and asked to change after researching what others experiences were and the general perceived feeling from me was that it (jabs) seemed to be better tolerated. I was on pill form for nearly a year and have been on the jabs since February. Since April I've only had smaller episodes or flares, which is good good good! :smile:

    Stu.
    No-one was injured in the making of this signature, however, quite a few electrons may have been inconvenienced.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I've been on tablet meth (varying between 22.5-15mgs) for about 10 years with no ill effects other than occasional tiredness.

    I think you need Hep A for all Caribbean countries but the rest varies with the country. Best take proper medical advice.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hello
    I too have been on methotrexate over 10 years, only on 10mg now but have been upto 20mg in that time I take it along side of leflunomide.
    I am happy to say it works for me.

    Juliepfx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi pepperflo
    Sorry I cant help with your question, but I just want to say welcome back, and I am sorry you have had a rough time...I will have everything crossed that you have a lovely cruise...I am sure you will.
    Love
    Barbara
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi pepperflo

    Nice to see you posting :grin:
    A Caribbean Cruise sounds lovely.... especially when I'm staring out at torrential rain at the mo :wink:

    I'm an Mtx injector too... :wink: Although it is a potent drug you'll be well monitored by the medics for any adverse side effects and given prompt advice on reducing or stopping it if need be!. It's a drug worth having and hopefully you will benefit from taking Mtx and see a reduction in arther symptoms before too long. :grin:

    Sorry can't advise about the cruise and the immunisations.... maybe you should discuss it with your doc or rheummy?

    Iris xxx
  • williamlargs
    williamlargs Member Posts: 143
    edited 30. Nov -1, 00:00
    Hello

    I would very much champion this drug as I have been on it now for 15 months. I worked up to 20mg and I am now on 15mg. It took at least 3 months to kick in but I can safely say that physically I function more or less as normal on it.

    Only issue I have had is after an endoscope it was discovered I have slight inflamation of my stomach lining and a hiatus hernia and now also take omeprazole to protect my stomach. The omeprazole means more regular bloods than I was on but I can cope with that OK.

    Good luck
  • frogmorton
    frogmorton Member Posts: 29,838
    edited 30. Nov -1, 00:00
    Just a very quick good luck to you Pepperflo and l hope it works out very very well for you.

    and please let us know if it does :smile:

    Love

    Toni xx
  • pepperflo
    pepperflo Member Posts: 91
    edited 30. Nov -1, 00:00
    Thank you everyone, and it feels good to be back., I'm just on my 3rd week of taking Met, so still on the low dose for another week, then have to increase it, I'm taking it along side the Sulfasalazine, and I take 6 tabs a day with this one, and still also on gabapentin, excroicib ( excuse the spelling). They had put me on Amotriptalyne also for my neck pain, but had to come off them, as I was like a zombie all day.
    I feel like a druggie with all the tabs, and I am the worlds worse at swallowing them, it takes me ages, and choke with nearly every tab, my Husband laughs at me, he says he's never witnessed anyone taking tabs like me lol.

    I'm off for my flu & pheumonia jabs in the morning.

    I know my pain won't completley go away, but just to get some relief, esp with us being in Autumn now,a nd are expecting a big freeze in the next few weeks, this weather is def weird as last week, we had a heat wave, and the hottest Oct on record here in the uk.
    I'm glad everyone is doing okay x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Pepperflo,

    Nice to see you again and the cruise... I'm not jealous :lol::lol: Should be good and I might smuggle my self into your bags :wink:

    Hope the mtx will work for you and work well. It might take you into remission and help keep you there cus thats the real goal eh?

    Been on it over 2 years now, most of that on 25 both tablets and injections. Its not too bad and if it works then it will all be worth it for you for sure.

    Hope your sticking around now for a bit and please just leave a bit of breathing room in your bags :wink: Cris x
  • pepperflo
    pepperflo Member Posts: 91
    edited 30. Nov -1, 00:00
    Thanks cris and yes I will be sticking around now :lol: I will leave room for you in my suitcase, and can't wait, the only thing I'm dreading is the flying, I might have to take a trip to the docs before to get something to help me relax on the plane, as I have panic attacks and get myself into a right state. If we wasn't going so far I could consider, just sailing from southhampton, but that will take days off our cruise, so to fly to new York or that way on to pick the ship up is better.
    Hopefully by the time we go I will have been on Mex for quite a while so will hopefully have some benefits from it, as i want the Holiday to be special for us both with it being our silver wedding, and not hindered by me not being well.
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Pepper,

    Fingers crossed the mtx will work well for you and at a low dose as well.#

    Its a long flight but it will be worth it when you get there :grin: Thanks for leaving me an air pocket and i promise not top exceed your weight allowed thing :lol:

    Let us know how you get on with the mtx and some folks get a really good result quite early one. Cris x
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Hi Pepper

    I was scared about starting on mtx too, but now it doesn't worry me sT all.

    I find the injections mich better then the tsblets. The only real side effect i get is extreme tiredness two days after the injection, so I have to schedule in a very 'easy' day and o to bed early..

    Marion
  • pepperflo
    pepperflo Member Posts: 91
    edited 30. Nov -1, 00:00
    Thanks Cris x
  • pepperflo
    pepperflo Member Posts: 91
    edited 30. Nov -1, 00:00
    Ive just received a letter from my GP's saying that I have early signs of macrocytic changes in my red blood cells, Ive only been the tablets for 4 weeks. Ive just checked on internet and its caused through a lack of folic acid ( which I am taking 6 days a week) and vitamin B 12.
    They are going to monitor my bloods which I am already having them taken regularly, but add onto the full blood count B12 and folic acid.

    I also read some of the side affects, and now I'm wondering if the bad migrane, Ive had since last saturday is the cause of it, and also I had a sore tongue the other week, and struggled to eat anything that wasn't soft, and fatigue, I just put that down to some of my meds.
    Also the other night I was up with excruiating pain in my stomach, like someone was twisting it all around, I was doubled up with it, and really frightened, but I just thought it was really bad trapped wind, but will discuss all this on Monday when I go to feed the vampires at the Doctors.
    Has anyone else had this with there blood count ?
  • debsmartin
    debsmartin Member Posts: 209
    edited 30. Nov -1, 00:00
    Hi Pepper

    I too am very thankful that I'm on methotrexate, I know it gets alot of bad press and I too was scared at the thought of taking it but it has worked wonders for me, I also have enbrel injections (and touch wood), they both seem to be working very well for me. I do get a sicky feeling when I take my tablets but a couple of mints or if its really bad I have found an orange icelolly works really well (not sure how it helps but it seems to take away the sicky feeling).

    Good luck and try not to be too worried, you will be monitored very closely.

    debs
  • pepperflo
    pepperflo Member Posts: 91
    edited 30. Nov -1, 00:00
    Thanks Debs I suppose I will worry until Ive been on it for a while longer, it just shook me up when I received the letter, but will chat with the nurse on Monday about this Macrocytic anemia, and see whats best to do. I'm also thinking because I don't eat very well maybe thats why I'm lacking these vitamins, I just don't know lol x
  • pepperflo
    pepperflo Member Posts: 91
    edited 30. Nov -1, 00:00
    Hi Debs what is Enbrel injections and what are they for ? Ive never heard of them.
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Enbrel injections are anti TNF drugs, I am also on them. Xx
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!