Methotrexate

Hi again

Just had my first appointment today with my Rheumy nurse to discuss medication. So much info to take in. I came out of hospital and I feel mentally drained with all this.

Im really afraid to start this drug on Monday after the nurse seemed to concentrate on the negative points and not much positive. Any advice would be greatfully received !

25 Replies

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  • Hi Trish

    Can i ask are from up Newcastle way, just your picture has a wing from the angel of the north on it, or it looks like it.

    As for methotrexate i cant offer any good advice as i couldnt tollerate it. However dont let me put you off as there are so many on here on mtx who do fine.

    I was also like you and very scared and worried about trying it but if you dont you'll never know if its right for you.

    I know its all very scary but im now on my 3rd dmard and im at the stage where i'll take anything to feel better.

    Give it a go, it could be right for you and make you feel so much better.

    Take care and let us know how you get on.

    Jo

    Xxxxx

  • Hi Jo thanks for your reply. I think im just feeling a bit down today. The nurse wasnt really helpful and just wanted to quickly give me the info cos I was her last patient of the day. And yes that is the Angel of the North !

  • hi trish i was just like you and have been on it 8 weeks now only been sick once so gonna persevere see my rhuemy nurse for first time this week so dont be frightened try it just a pain takin so many at once i did swap and change from day to night before bed seems ok not bouncing around xxx

  • hi, i take it and it does nothing at all for me and a few other medications in all none of it works .hopefully soon i be useing enbrel injections and see if that works ,,, vicky

  • Hi Vicky thanks for your reply. Hope you get sorted soon. Trish.

  • I've been taking mtx for 3 yrs now with sulfasalazine and plaquinal. Worked for me with no side effects. I am in remmision,so perhaps i am one of the lucky ones. My advice would be to give it a go. Dont expect instant results. And good luck. Oh and awa the lads, as you may say up there. Unless you're a maccum of course :-)

  • Hi and thanks so much for your reply. I am indeed a Mackem but dont hold that against me !!!!!!

  • Hi Trish

    I know where you are coming from with rheumy nurses, i was very down for ages after being diagnosed and i found my rheumy nurses not the least bit helpful to me at all and unfortunately neither was my consultant. I still feel im going round in circles and it feels like they just fob me off as they are too busy, I have however found my doctor is more helpful and has told me my blood results and gone through them all with me, i didnt even realise that the doctor got the results!

    Feel free to message me if you need to talk, or just rant i was only diagnosed April 2012 but it started November 2011 so i can relate to how you feel.

    Im only down the road from you in Seaton Carew, Hartlepool. Well about an hour away lol.

    Take care & look after yourself

    Jo

    Xxxxx

  • Thanks Jo. I was just diagnosed in January this year so its all very new to me. Its good having people to talk to about this. I dont think my work mates or family really understand the impact this has had on me.

    Im Sunderland by the way.

    Thanks again and take care. X

  • I know how you feel regarding family & friends & people at work not understanding you, i dont know anyone else with ra except the people on here and unless you are going through it, its so very hard to explain how you actually feel and what you are going through.

    My hubby is an avid newcastle supporter not sunderland but we wont hold it against you lol.

    Take care & keep posting any questions you need answering.

    Jo

    Xxxx

  • Oh dear only one positive post re MTX for you Trish! I've just posted a question about nausea but I've been on MTX for 15 months now and take it in injectable form because at the higher dose I needed it was making me feel sick. But basically it is the most widely used and generally effective of the DMARDs and is generally well tolerated by most people. For many its a bit of a miracle drug and when I think back to how I was feeling a year ago I must say that its been life changing for me. It doesn't work quickly but when it does it feels like you've been given a good oiling and can suddenly move again!

    This is the hardest stage of RA in many ways I think as everything seems so scary just now but many people do get their normal lives back and you will learn how to cope and adapt to fluctuations in RA activity and learn that side effects do often pass if you have any. Good luck to you and a warm welcome also. Tilda x

  • Absolutly no prob with being a mackem (apologies) for my spelling! My ancestors were from the north east. All the best. Stuart.

  • Watch it Stuart or we'll gang up on you lol.

    Im a northerner too lol.

    Jo

    Xxxx

  • Hiya i'm shirley, just like to say welcome, Sorry that you have had to join this site, but people on here are really helpful, i was only diagnosed in September and am on 15mg of MTX, I am still having regular flare but not as bad, So it is important to give the med time to work as they say it can take up to 12 weeks, but everyone is different, Hope it works well for you, Take Care Xx

  • HI, I was diagnosed last Oct and put on MTX starting at 10mg increasing to 20mg over 4 weeks. Unfortunately it is not working for me. My hair has thinned a lot which has broke my heart as I have always had thick curly hair. They increased the folic acid to try and stop the thinning but it still looks horrid. I am back to be reviewed on march 12th. There is talk of either changing to injections or adding another DMARD. I am also on prednisolone as I also have PMR but even that has had to be increased last week to help me through the pain.

    A lot of people do indeed get on well with MTX so it's worth a try. According to my son who is an ICU nurse and a sufferer of ankylosing spondilitis also on MTX, says MTX is the kindest of the DMARDS. Try not to think to much about the negs, read the booklet given you (orange & white) and also the blue one that you keep your blood results in. I do hope you have been given these and have been told to have bloods every 2 weeks to start with.

    Good luck and take care

    Sue

  • I'm another MTX supporter - it has turned my life round! It took about 3 months to start working, and a while longer to really stabilise, but I've gone from nearly bed-bound to doing long walks and a near normal lifestyle thanks to these drugs. I did have some side effects in the first weeks, which wasn't very nice, but they all passed off after a couple of months. Hang on in there, things will get better very soon. Polly

  • I'm another person doing well on mtx. Have gone from daily flaring to being able to ride a horse again. I've had very few side effects. They have to tell you the scary stuff because you do need to know what to look out for, but for a lot of people it's life-changing. Expect it to take some time though.

    Good luck,

    Dotty x

  • With the right drugs relief is possible be advised by your local health team.. and yes you can take two dmards together a lot of people on here do with no problems x

  • Hi I'm Claire it's only natural that u are feeling so brainwashed at the mo, I felt exactly the same in Sept when I was diagnosed..confused and sad as I thought my life would never be the same ...BUT you do get your head round it all especially with these lovely people on this site , I'm lucky have a fab rhumi team as well. I am on 20mg Methx and folic and will be adding to the mix soon (I think) , I am tolerating it well and u do get used to taking it.. Was crazy bonkers lol on the google PLEASE don't do that it will only scare you so much negativity ...positivity is the key and gradually and hopefully you will notice pain easing etc but as Shirley said allow time as it does take a while for these meds to settle in your system ...and if Methx doesn't work too well for you then they will try u with another DMARD they are plenty now days.... Please try not too worry , I hope I've made u feel a little better , I just remember how I felt but its ok honest ...Take Care Claire x

  • I'm also doing well on MTX with sulfasalzine. Medical staff duty bound to point out poss bad side effects. We would criticise them if they failed to point them out before you start. I found it helpful to trust my consultant [at least until I have reason no to] and to keep an open mind. Try to find that frame of mind that allows you to remain the person you have always been who happens to now have a medical problem to deal with. You will be able to deal with it with the right treatment & support - keep calm & carry on x

  • Don't listen to all the old wives tales about Methotrexate.I have been on it for about 4 years now -I took to it like a dream and the relief I got was amazing. I have had to come off it few times because of other health probs, but I go straight back on at a lowish dose and work back up to my 20mg a week. It was the best thing I could have done - like you I listened a to all the negatives then I was in so much pain I took it & wish I had gone on it years before I did. I do hope you are one of the lucky ones who suit Mtx and get loads of relief from it.....Kathy

  • I am changing to a biologic as my RA too active. Too much early joint damage before RA properly diagnosed 17 years ago. On MTX sub cut I have had a little thinning of hair but think that was age too in my forties. I got my hairdresser to chop layers into my hair more ... Texturized it more - and used some great hair products. Shu Uemura are fab but expensive. They last so long though. Not much needed. Also a lovely herbal French shampoo called Phytoaxil not as expensive which is natural and full of herbs. Worth a look at the Phytoaxil. Sub cut MTX did not make me feel queasy as the tabs (at top dose 25mg) did just a little and it was never bad, but I always used to do both before bed. Never found they work me up feeling sick. Never sure I was tired due to MTX or just the RA! Good luck and although it is the Rheumy nurse's job to point out side effects, it is also to give you reassurance. I am seeing mine next week. Haven't met her before had a long chat on the phone and she sounds great. It is very hard to take all the info in. I have been really researching and agonising over biologics but after a month of being practically bed bound and crying, I don't think I have much choice. Thanks here to the lovely people who encouraged me and NRAS.

    The hospital guided me though a couple of sub cut MTX there at the start, and said I was very good with the needle and could go off and do it myself no problems. It never hurt or ever reacted, more than the tiny jab. That "tweak" had gone in a few secs. Warmed it in my hand before. If you can't eventually tolerate tabs in time to come, they will talk about sub cut I am sure. Everyone is different with their reactions. Also existing health issues. I can't take an Apsirin or Penciliin or some antibiotics so it doesn't always reason, I know. I can't recall here who wisely said to me that the drug you take becomes in a way "the devil you know". You get used to it. I bet you are soon benefiting from your MTX and getting back in the swing. I do hope so!

    Only those who have RA - your partner, those you live with or your very closest and dearest friend's will truly know the frustrations and all the rest which goes with RA. I used to be an athlete and an avid hard core fell walker so that was hard to stop. However, I decided to go back and study Fine Art (I am originally trained as a graphic artist) and several years later of part time study I have a BA and MA and although I didn't do the art to be therapeutic it has helped my mind enormously to keep off the pain. Yes, nothing is easy with RA but you WILL find your way once MTX kicks in and I hope it does very very soon.

    Just seen Kathy's post and she is absolutely right! ;-)

    ;-)) Neonkitty xx

  • Hi Trish

    I have also recently diagnosed with RA so of course can't answer your question but can totally identify with how you are feeling, I came out of my consultation with a leaflet about MT, feeling totally overwhelmed and a bit scared.

    I can see by your replies that you have lots of positive replies which I have had too, thank god for this site as nobody around me seems to understand the emotions I'm going through right now....I'm usually the one that everyone looks on to be strong in my family so I really appreciate the help here!

    Good luck with taking your first dose and I hope it makes you feel better soon. :)

    Maddie xxx

  • Please excuse my typo's....typing on my phone! X

  • I have been on Methotrexate for a couple of years now, and like you was very apprehensive with all the possible side effects. I have not had any problems and have managed to wean myself off the prednisolone which has caused my quite a few major side effects (diabetes, cataracts and weight gain)

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