thread: Has anyone taken methotrexate????

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  1. #1
    Registered User

    Dec 2006
    In my own private paradise
    15,272

    i have just messaged BW to come in and post - she was taking MTX for arthritis

  2. #2
    Registered User

    Dec 2005
    In Bankworld with Barbara
    14,222

    I take it for my psoriasis. I have been taking it on and off for 3 years now with huge success. It can be quite a nasty drug and some people do experience side effects, but I never experienced any myself. I am just about to go back on it as I rest over summer and take the MTX over winter. I usually have a dosage of about 20mg which is pretty conservative. I think you will find that you will see a good result from taking it and it is definitely worthwhile. You will also have to take megafol folate tablets as the MTX leeches folate from your body and if you don't take it you will become deficient. You also need to drink a load of water on the day you take it as it can be very toxic on your liver and kidneys - which is what the blood tests monitor and you will need to have them monthly. As for costs, the MTX costs $18.20 for a bottle of 30 tablets - I don't have a HCC to get them cheaper. The most expensive part is the cost of the bloodtests. The Govt changed the rules about bulk billing of pathology tests ordered by specialist Drs and this includes dermatologists. From memory the last bloodtest I had done cost about $114 and they will send you the bill for that, so when you get it, take it straight to medicare to get the cheque from them and then pay the difference. I got lucky with one of the Pathology women and she would put it through as being a repeat test and I only ever paid for about half of them. You may even be able to organise for your GP to be the one to order the path tests to avoid having to pay upfront for them. Anything else you need to know about it, just ask - I'm more than happy to help

  3. #3
    Registered User

    Nov 2009
    Vic
    1,292

    Methotrexate is an immuno suppressant so it has to slow down the immune system from producing things that are usually helpful in making the body heal. Sometimes however the immune system can actually compromise healing for instance inflammation.

    Inflammation can 'over react' and make the problem much worse which is what you see in arthritis and skin conditions such as yours.

    Anyway..methotrexate does have its side effects but in small doses once (maybe twice) a week it tend to be 'safe' especially for a person who isn't riddled with lots of other more serious health complications.

    It sounds like you don't have many other options to help treat your condition as methotrexate is a last resort medication and isn't usual used as a first line of defense thing.

    If you are really concerned enquire as to the dosage..maybe you can use it in conjunction with another medication?

    Good luck

    ETA: After reading Trillians post- yes definatley go to the doctors for a slip for blood tests. You may not require them for a long time though depending on how long your on it

  4. #4
    Registered User

    Dec 2005
    6,706

    Haven't really read through the replies, but having used both prednisone and methotrexate and having the methotrexate damage my liver, I still want to say - GET OFF THE STEROIDS!!!

    Basically, prednisone strips calcium from your bones making your risk for osteoporosis much, much greater. My rheumy was flipping out over me being on 20mg of prednisone daily and had me taking special calcium supplements. I tried to stay at 10mg or under, but I was on prednisone continuously for quite some years. I see the effect on my teeth - fillings falling out and crumbling because the tooth has been weakened - I think I'm going to be dealing with that side of things for a while. I'm also at a stage where I'll deal with being in agony and unable to move rather than take the prednisone because it makes me angry and aggressive. Last time I took it was actually for an allergy that had my eye swelled shut. I found myself in a rage where I wanted to throw my son into a wall. I reduced my dosage much faster than I was meant to (but because it was short term this time, that was ok) and I simply flat out WILL NOT take prednisone again.

    Now... the methotrexate.

    Yes, it's a scary drug. Yes, it's used in chemotherapy - and that's what a lot of the sites you would have been looking at were probably talking about. You'll be taking it at much lower doses than a chemo patient. It does lower the immune system, but that's the way it works - your immune system is going nuts and doing stuff it shouldn't and you can't suppress the immune system to stop that without stopping your immune system from doing stuff it should be - if that makes sense. The big thing I would suggest - lots of hand washing and have hand sanitiser pretty much everywhere. Be absolutely anal about sanitising before eating, before touching your face, before dealing with food. If your kids are in day care, do everything you can to build their immune systems. I keep Sam in day care and I have to rely on his immune system to protect me (I'm no longer on mtx, but I am still on immune suppressants - stronger ones now).

    You will need to have regular blood tests to keep an eye on your liver function. I've heard stories of one doctor telling their patient "don't worry about blood tests, just one day you'll wake up and you'll have turned yellow and then you'll know to stop". Scary. Monthly blood tests and they'll pick up any issues long before you turn yellow and long before permanent damage is done to your liver.

    You will also need to take folate supplements. Speak to any doctor about folate supplements with mtx and you'll get a different answer on the dosing regime from all of them. You will most likely want the 5mg megafol tablets. I started with the lower dose general ones (can't remember the dose there!) and I had terrible trouble with nausea and diarrhea for about 2-3 days after I took my mtx. Switched to the higher dose folate and that became more manageable. It is important that you start slowly (I started on 5mg the first week and we increased by 2.5mg each week until we got to 15mg, stopped for a bit, then went to 20mg), it helps you manage the side effects. I'd also suggest that you take the tablets at night as they would knock me around something shocking. In the early days (I started when Sam was 8 weeks old) I would fall asleep, sleep for 12 hours and not hear a thing... So DH was obviously dealing with Sam over night! But it was just that first night. I'd be sleepy and nauseated and generally out of it the following day, so again liked to have someone around on that day to help with Sam, and would avoid driving. After a while, I had none of these issues and my sleep after mtx was normal, I was still a little fuzzy on the day afterwards, but could cope. You may not be effected this badly, you may not be effected at all.

    I must be lucky that I was through a rheumatologist - I get a blood test form every 6 months, and he has repeat blood tests on that for me. They are ALWAYS bulk billed. If the dermatologist-ordered blood tests are going to be super-expensive, get your GP to order them and copy your specialist in on the results. My specialist copies my GP in so he has huge files of blood test results, but that's helpful - I have everything to take to a gastroenterologist tomorrow.

    My liver issues aren't uncommon, but there's no guarantee that it will happen to you as well. We know my problems were caused by the mtx (my liver started to get upset at 17.5mg, so we took a break but then had to push the dose to 20mg in order for me to qualify for a different line of drugs), but I was on at least two other liver-toxic drugs at the time. The liver issues have continued as well, so it's certainly a bit more complicated than "mtx trashed my liver" for me.

    The final thing - you absolutely MUST have some form of reliable contraception. They prefer the OCP, implanon, mirena, etc. Something hormonal, they trust it more, it seems. Methotrexate causes horrendous birth defects (and miscarriages) so they insist on good contraception, and if you do wish to have another baby, minimum of 3, preferably 6 months off mtx and continuing the high dose folate tablets through this time before you even start to TTC.

    If there's anything I've missed, feel free to ask. I know I have a different condition, and in the end it wasn't controlled by mtx, but it did work initially and it worked WELL.

    BW

  5. #5
    Registered User

    Jun 2007
    Where Chaos is fun and plentiful!!!!
    1,883

    Thanks everyone!!

    BW- that is loads of really usefull stuff to know!!! Thank you!! I will be taking a tablet every week and she did mention the folate, but never mentioned i might feel off, so i will be taking the tablet sat night so DH is home with us on sunday!! Very useful to know!! Just in case!!
    I am looking at getting a merina put in, i havent been able to because i was also getting infections from my hands (staph) and it meant my body would most like;ly freak out about it, so i will be looking into that, we are 99% sure we are done in the baby making business so i am not too worried about those side effects at the moment!

    So i guess i will be going for my chest xray then!! I think i will give it a go, but i am sure i will be asking loads of questions once i start lol!!

    Oh and my derm could bulk bill me the first lot of tests. will it be different for the next ones??? I may see if the gp can do it instead, i am pretty sure everything is getting sent to her, i just havent been back there since i started seeing the derm.

    Thanks everyone for your help!!

  6. #6
    Registered User

    Dec 2005
    6,706

    One thing I forgot to mention... If you vaccinate your kids, you need to be really careful if they are given a live virus vaccine. Rotavirus was fun - that was two weeks in gloves to change dirty nappies, and I still caught it from Sam once. MMR was also stressful, but we coped with nobody getting sick. The chicken pox vax - we skipped that and will worry about it when Sam's older if he doesn't manage to catch them.

    Immune suppressants are scary, but they are also life-changing.

    BW

  7. #7
    Registered User

    Jun 2007
    Where Chaos is fun and plentiful!!!!
    1,883

    Thanks - yeah DD will be due for her 12 month ones in a few months... I might delay them a bit - or actually maybe i will do them early, before i start the meds.. I might look into that actually. I see the Dr on the 9th of June and DD is 12 months on the 3rd of July.. I might look at getting them done early then I am ok for 6 months with out having to worry! Thanks so much for sharing all your experience!! It has been really helpful!!

    So how are you going now that you can't take the methotrexate?? Are you managing your arthritis ok??

  8. #8
    Registered User

    Dec 2005
    6,706

    I've been allowed to go on to a different class of drugs all together. They are called biologic agents or tumour necrosis factor alpha blockers (but could be inhibitors). I have an injection once per fortnight, and I'm actually doing quite well with it. Unlike the mtx, they have started working very quickly (did anyone mention that it may be 6-8 weeks before you start to see results from taking mtx?). So after my very first injection I actually had my first pain-free day in years. Get a few more injections in and I'm almost making it to the end of the two weeks before I get sore. I inject tonight and I've woken incredibly sore, but that's ok. I know relief is coming, and quite soon too.

    I've just found out I have a liver condition which means I can no longer take things like prednisone and must avoid all non-steroidal anti-inflammatory drugs, so I'm now down to only paracetamol and codeine for pain relief, so it's a good thing I've got these biologics going or I'd not be able to move at all. There's very strict rules for who qualifies to get these drugs - two injections have a full cost of $1774, but because of my PCC I only pay $5.60. Could you imagine paying that much for medications every month?!?!

    BW