Injectable MTX - the bad taste is back - do others get this at all?

Hi All. A bit grumpy and disappointed because after yesterday's MTX injection - my 7th in total to date I had an instant feeling of sickness and within ten minutes the foul taste that I used to get after taking MTX in tablet form came rushing back. Today I woke terribly tired and heavy and my hands were very stiff. I've felt deeply chilled all day. Does anyone else get this foul taste too? I'm so disappointed because the injections seemed to have helped so much with side effects and ESR and RA symptoms. I'm still feeling relatively pain free but not feeling as well or energised - feel totally wiped out much as I did the day after the pills. Sorry to moan I know I'm really lucky but the foul taste is just so...well.. foul?!

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  • Hi Tilda, I remember reading about the problems you had with this foul taste before, and I'm sorry to hear that it has returned. I've used the tablet form, and have been injecting for months now, with no sign of such a side effect fortunately. Is it possible that something else could be causing it? Reference your feeling wiped out, I usually feel under the weather the day following my injection, and now just accept that is the way it is!

    Ally x

  • Dear Tilda, I answered this about 40 minutes ago but managed to lose the answer in cyberspace (when my fingers are bad, I hit the wrong buttons, which can sometimes be embarrassing as people think they are receiving 'drunk texts!'. What I wanted to say is that for a short time after I started MTX jabs in March, I would have an unenjoyable reaction which made me query why I was still taking the stuff. However, after all this time (since March) I am so pleased that I only sometimes feel knackered after taking the stuff (normally the day after) but it is something and nothing. You are doing really well at the moment and please do not lose heart. Hopefully, this bad reaction is a one off and you get back to your new re-born self next week! Also, been meaning to say for ages that in summer my husband and I were on a round Great Britain cruise on the Queen Elizabeth and spent some time in Kirkwall. We thought it was absolutely gorgeous and totally unlike anywhere else we have been. I now know why people rave about this part of Scotland - for all the downsides such as everyone knowing your business, it must lift your spirits when you look around you at the views. Again, please do not get disheartened ... keep plodding on and you will re-gain your spirit. XX Virge

  • Well I hate to boast but Kirkwall isn't a patch on Stromness where I live! But really pleased you enjoyed your time here - you'll have to come back and explore the islands properly some day. Tilda

  • Thanks Ally and Virge - I admit I hate this bad taste almost more than anything - it makes me feel unclean somehow but although I keep brushing my teeth and gargling it never shifts until it's ready to. Strangely - when my RA first started in earnest - I had a really horrible taste in my mouth for about 3 weeks so I somehow associate the one with the other - even after almost 2 years? But I'm really hoping it's just a one off and that I'll be back to my born again pain free self next week. I was just so disappointed when it came flooding back? Tilda xx

  • Tilda, sorry but I have to say it .... maybe a nice chilled large glass of white wine would sort it out?! You could perhaps gargle with it and pretend it is listerine mouth wash or something. Obviously as opposed to spitting it out you would have to swallow it ........ XX Virge

  • I like your thinking, though I would prefer red!!!!

    Ally x

  • allypal, I would like to think they both work well as mouthwashesl. If you listen to the press, red is better for your heart but I prefer white as it does not stain your teeth! See, I do listen to my dentist xx

  • Heck haven't you seen my post about the silly old liver getting in a raffle with the slightest hint of booze these days?! What are you encouraging Virge - please stop it's like torture! I'm chewing eucalyptus flavoured gum now as a desperate resort. The moment it's out I'm back to sewer mouth though. TTX

  • Oh no! Not the sewer mouth! I'm sticking my fingers in my ears and peeking through my fingers (metaphorically) as I'm so suggestible that I can't quite bring myself to do more than glimpse at your post. How truly horrid. let's hope that it is just some odd food combining thing that injectable MTX and whatever you had for tea react badly with each other, so it's a one off. Pxx

  • Sorry, was meant to be a jocular post not a suggested way of life. Don't Koala's eat eucalyptus leaves - maybe this means that a holiday in Aussie is on the cards? X

  • I'd say "I wish!`' but I don't really have any urge to go to Aus. After Tuscany with the heat rash, hornets and scorpions I think I'm not really cut out for the larger insect life that exists in profusion over there on the other side? I'll settle for Wrigley's frankly!

  • Hmm well I did think of you when i put this post/ question up here Polly! I am hoping/ wondering if it's because I ate a fishy platter for my lunch yesterday and again today. I got a thing about fish oil for some reason and opened a tin of mackeral and then discovered some hot smoked salmon too. Hoping that injecting after lunch was the tipping point and next week will resume evening injecting just before dinner. Really hoping it's a one off though but I did just wonder if anyone else suffers from foul taste on MTX. I think I've asked this before but just can't recall and too weary to trawl through my old questions so thought I'd just ask again. It's not just the foul taste that disappointed but also the feeling chilled and wiped out part - have been so fortunate lately that it feels such a come down to be a side effect woman again! TTx

  • Well I get the wiped out bit. The first time I injected I was completely flattened for nearly 2 days, but now it's a bit better and I just have a wobbly morning. I inject at night, and try to go straight to sleep. But am certainly going to avoid fish for dinner..Px

  • HI Tilda, Not sure if any one has suggested increasing your folic acid.(I'm at work so haven't got time to read through) I'm on Injections too, and when I start to get that "yuk" taste I take more folic acid. You can take it every day except injection day if you need. It definitely helps me.

  • Thanks Alice - great idea I'll just have one now - I did have one yesterday for exactly that reason but have forgotten today. I normally take 3 tablets a week starting 48 hours after my MTX but might up the dose now you've suggested it. Tilda x

  • Hi Tilda, you may have it the nail on the head with your comment, 'you opened up a tin', could it be that? Sometimes you can get a reaction of 'tinning' in the mouth when it reacts against a drug. When the symptoms disappear try it again see what happens.

    Also when I was taking MTX I was always washed out for the weekends after taking it on a Friday night.

  • Thanks George - I think you are right about the tinning and actually maybe about the oily fish. It felt as if from the moment I had injected I was poisoning myself? But I've had that feeling sometimes ever since having RA - weird tastes and strange sensations. When it all started I was convinced I had mercury poisoning from too much tinned tuna or my fillings?! I'm going to revert to injecting at night now and avoid tinned food for a while too! Tilda x

  • Hope all that works, I've been a bit busy lately, but concerned to think things might be goi g bad. Sounds as though careful monitoring of diet would be a good idea.

    I've just had what might be my last dose of infliximab, but the nurse in charge has booked me in for January... We will see

  • Hello

    This is my very first post on this site even though I have been reading the posts. Have had inflam. arthritis since Feb. Have only injected myself 3 times and am coming off steroids. I feel so much better it is unbelievable. Is this possible after just 3 weeks. Anyhow I have a funny mettalic tast around my gums and the edge of my tongue and sleep for up nto 18 hrs the next day.. But considering I could hardly move for most of the past few months it seems a small price to pay.

  • Thanks Emn66 - and welcome! I feel exactly the same way since starting injections - it seems to have halved my ESR too which is wonderful. I did read recently that a study was done to compare oral methotrexate with injectable and the results clearly showed that injectable is significantly more effective than tablets so I am really chuffed and not going to let a the vile taste get me down unduly. I found MTX pretty life changing all in all and I wouldn't stop taking it unless I was forced to now. Tilda x

  • I've been wondering how you were getting on Cathie? Hope things aren't too hard for you just now. We've just been interviewed at local BBC radio about our new job and what a pair we sounded - Punch and Judy show describes us well! I had to spit our my lifeline chewing gum and now have none left so straight back home to brush my teeth! Also got leafleted by a woman in Tesco about antibiotic treatments for conditions including arthritis. Made the mistake of speaking to her about this and she announced that she had Ostroarthritis everywhere -"you know - the serious one?" And said how antibiotics had cured her cancer too. It was most confusing I admit but she looked quite well on it anyway! X

  • Love to know which one that was, my mother is riddled with OsteoArthritis plus she has Osteoporosis, am sure her consultant would have given it to her if it were true.

  • Well she said Osteoarthritis and then described it as "the serious one" - I guess it does feel serious if you have it everywhere and I suppose in some ways inflammatory arthritis is better because we can be given drugs whereas severe OA is just seen as arthritis by the medical profession and they haven't got dmards or biologics to resort to? But it made me laugh the way she said it - I think she would have claimed to have had everything at some stage if I had asked!

  • Tilda, for some reason when I tried injecting at night I did not sleep at all (apart from maybe one hour) even though the MTX made me feel tired. It seemed to give me a 'buzz' as well as the tiredness. I now inject on a Sunday morning, go back to sleep for a couple of hours, then get up. I usually feel a bit rubbish on a Monday but only if I think about it? Just another thought for you to ponder on - many people inject at night but I will never do it again. Very boring to lay awake for hours. XX Virge

  • Forgot to ask, do we now need to ask for an autograph or contact your agent at the BBC?! Please tell me you did not stick your chewing gum underneath the desk like we did at school! You have also made me so pleased that we don't have 'the serious one' as God knows what other drugs we would have to take XX Virge

  • Ha ha no nothing serious about RA - didn't they tell you our drugs are just light weight really?! Speaking of which - that's exactly why I've been taking MTX earlier. I too seem to suffer from a weird buzz if I inject at night? I'm knackered but also get insomnia - which very prone to anyway so certainly don't need more! I think I will go for early evening and take an Amitriptyline after as they help me sleep a bit (until 5am anyway)

    You can always google bbc radio Orkney and listen again on Monday - its broadcast at 7.30am and might entertain you regardless of my and my OH being on it for maybe a minute. I'll not be heading for the jungle ti chew bugs quite yet Virge! Xx

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