Started mtx Friday

Just a little update. I picked up my first prescription of mtx yesterday from the pharmacy. It all felt very serious as she took me into a side room and warned me about how serious the drug is etc. Anyway I decided to take the bull by the horns and knocked back my first dose of 7.5mg with my evening meal. I decided not to read the leaflet because quite frankly I was starting to feel a bit morbid about the whole business and decided the best way forward would be to just go for it! The evening passed by fine followed by a comfortable night and today went well too. I don't know how long it takes for side effects to show but so far so good. I was aware my mouth tasted a bit dry and strange this morning but nothing worth worrying about. I know 7.5mg is only a low dose but still felt relieved not to wake up with an extra limb or anything. The follic acid is going to follow on Tuesdays. Anyway, keeping my fingers crossed and trying to keep positive. We've been out looking at wallpaper for the bedroom today. If I'm going to get more infections or need to take to my bed then at least I can lounge in style! Hope you are all keeping well and having a peaceful weekend.

Paula x

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  • Bless you!

    I have been taking Mtx for 18 months, tablets to begin with and have been injecting since last May! The side effect I suffer from are mouth ulcers - big angry ones that hurt,but I now take folic acid every day execpt meth days, and that has helped. I changed from tablets as I suffered from a bloated stomach, injections are ok - I hate needles, but at least its over in a few seconds!

    I hope you get on ok - my advice is to keep a diary, record how you feel each week (the weather effects me!) and any concerns speak to your nurse and with the records you have, you can record info they give you and refer back to it!

    Hope this helps!

    Good luck, Pen

  • Thanks Pen, I like the idea about keeping a diary and have started that. Still ok up to now, the only thing I've really had up to now is a drippy nose! I won't count my chickens yet though. Those mouth ulcers sound awful, I've noticed it appears to be a very common side effect but fingers crossed I never get to find out. It's been a lovely day today so we've been taking advantage of the weather and doing a bit of gardening. It always makes me feel better to get outside for an afternoon. I hope you are keeping well and thanks for your message.

    Paula x

  • Hi Paula - well done taking your first dose! I recall what a nervous state I got into first time! I think, and could be wrong about this, that if you tolerate it well from the outset the likelihood is that this will probably continue to be the case. Also remember that quite a few of the people who have intolerance to it probably come on here and speak of it so it may well be better tolerated than we who come on this site see, if you know what I mean? I didn't tolerate Sulpha and haven't done to well on Hydroxy to date (3 days!) but have tolerated MTX reasonably well as far as the most common side effects are concerned - no nausea, hairloss or mouth ulcers so to my mind it is the DMARD I'm doing best on so far. Fingers crossed (a bonus of MTX that I can just about do this now!) that you will be the same - minus the mood changes and occasional allergic reaction plus liver raise of course! I get that weird taste and dry mouth the next day too. Tilda xxx

  • Sorry to hear you're not getting in with the Hydroxy Tilda :-( How long do you need to give it before trying something new? Hopefully you'll be sorted and get the right combination soon as I think it's about time you got a break. I was only saying to my hubby yesterday that although this site is fab it's perhaps populated by a high proportion of people who have problems. I suppose if diagnosis and treatment went well then chances are you wouldn't be seeking out advice on a forum! I hope you're having a good weekend and hopefully a little sunshine. It's been lovely herein sunny Wirral today.

    Take care

    Paula x

  • I think people use this site for a variety of reasons - the main one being that RA is a lonely disease that most people don't want to know about or understand.

    The point the physio in our choir was making is that the people who put up questions about MTX side effects or reactions to drugs are often in the minority. It's not so much a question of only those not getting better come here though as there are some who are stabilised by meds here too of course but they come here to give support and get it back when and if their RA worsens again. But MTX is generally well tolerated compared to other RA drugs I believe.

    My GP was quite in favour of me quitting hydroxy straight away but I don't want to rule it out at the first hurdle and he accepted this.

    I woke up so fine today with skin feeling fine again that I took one tablet (200mg) at lunch and am now itching a bit again, face all prickly. Silly me should have waited a bit longer as GP said don't rush it, but was sure it would be fine on half the dose this time. Hoping it will just settle down.

    Not quite sure why GP was ready to let me quit? Maybe he has a different agenda that he's not telling me such as hoping I get onto anti tnf so I get better specialist monitoring from the rheumy team south? Anyway I will give it this week but quit if the rash returns even on the lower dose as I don't need this really. Tilda x

  • I hope things are getting better now with the Hydroxy and your face has calmed down. It does sound like your GP has your best interests at heart. It's a good job really with no rheumy appt yet. Have you been offered an appointmnt yet? Also have you been given any telephone numbers for specialist nurses at the rheumy dept to call?

    Paula x

  • No Paula I haven't. In fact I've just had a message from my rheumy, relayed to me by physio via email. He says he's been away at the BSR conference in Glasgow and has returned full of ideas. He accepts this long wait is not ideal but doesn't think it's just because of the remote location and says it would be the same anywhere else for me he believes re current funding crisis etc.

    He wants my GP to raise the MTX if possible and isn't concerned one way or another about the Hydroxy - which suggests it wouldn't have been his choice as he doesn't think it's that effective I guess?

    My GP isn't really wanting the MTX dose raised because of my liver but having read of Cathie's recent experience with liver hardening I'm not too keen to keep going up with my liver function a bit raised to be honest.

    So I'm being offered a choice between a telemed (video link) consultation in June or a real live rheumy apt at the end of July in 7 weeks time up here. Not sure what to go for really as I'm not in much pain just now but we know how up and down this RA can be?! I wrote back saying he should decide not me as I've never had a telemed consultation and don't know what would be best.

    TTx

  • hi paula ,i too was nervous when 1st on it ,i suffered badly from nausea ,and the folic acid daily didnt really help ,so ive now been on injections since nov and no side effects luckily ,hope all positive comments help you to relax

  • Thanks for your comments dapper. It really does help to hear positive comments. I hope you continue to improve.

    Thanks

    Paula x

  • I took to it like duck to water....well a couple of wobbly weeks first with headaches and so on. But generally it's been ok and certainly did good things for my joints and got them moving again. polly

  • Thanks polly, I hope it gets my joints moving again too. Hope you're enjoying a long weekend.

    Paula x

  • Hi Paula,

    I think I felt same way with first dose, it all sounds so serious I remember my chemist (now a friend) saying don't hold tabs in your hand too long before taking, yikes I thought!

    You have the right attitude, re the bed room, I did the same, have a lovely poppy wall behind my bed! New mattress etc.

    I have no nausea from mtx, you will always be well monitored re blood tests etc so don't worry, I used to study the med leaflets now I don't bother. It's all a matter of perspective.

    The best of luck sounds like you are on track.

    Xx Gina.

  • Thanks Gina, what's all this about not holding the tablets too long? I wandered all around the house with mine :-0 It is a good feeling to know I'm being monitored after the pre diagnosis phase of feeling left to rot! Glad you're doing well on your treatment, long may it continue. Thanks for your message.

    Paula x

  • Hi There, I also just last Wed started on my first dose, same as yours, And I have been told by all my docs and chemist to take the folic acid the next day, I am glad you had a better response than I i dont know what u r taking the MXT for Mine is for RA and I also have Fibro, My experience was horrible, I took Wed Night, and was so so through the night, But thurs was Horrible, I had (the best way I can explain) creepy crawlies of pain, all over my body, may have been the fibro, I dont know, But i was really scared, I was exhausted, and just kept rubbing all over, almost called for help, made it to the night, took an extra rapid release pain pill and on Friday I was much better, i only hope this does not happen each week. Good Luck To you

  • Hi LuckysJoy it's good to see you on here. I take the mtx for RA too. It sounds like you had a it of a worrying time following your meds but hopefully the side effects will settle down soon. I'm really new to all this but I'm sure more seasoned members will be able to advise you better than I can. Also did your rheumy give you a contact number for specialist nurses. I was given a contact sheet and told to call if I had any worries. I hope the mtx works for you and totally understand what you're going through, as does everyone using this forum. Fingers crossed all goes better for you next week but do keep in touch and let me know how you get on. Hope you feel better soon.

    Paula x

  • Hi Paula

    I started MTX on 17th March, have not had any bad side effects. All in all I am relatively pain free now, just the odd twinge here and there. Am still feeling quite tired though especially on the day I take my dose. I don't know if this is a normal reaction and whether it is down to the MTX or just RA in general.

    I hope all goes well for you.

    Mary

  • Mary, it's good to hear your positive experience. I hope you continue to improve too and the tiredness is only a temporary thing. Take care

    Paula x

  • Hi, cant type long so well done, i hope it WILL work!!!!! Axx

  • Thanks for taking time to reply while you're struggling yourself Allanah. Hope you're doing better today.

    Paula x

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