First Rheumy Nurse Appointment and MTX Start

[Birminghamowl]

Hi there,

Just thought I'd post to all those who are new on this journey and a bit anxious. I had my first Rheumy nurse appointment yesterday and had no idea really what to expect. I was quite apprehensive about it all and the thought of starting the mtx has been quite daunting. The nurse was really lovely and talked at length about it, but to be honest, everything she told me I had already found out here! Only stumbling block I had was requesting a steroid injection as my consultant had written me up for tablets, but I don't want to take those. She was very reluctant to give me it, so got a doctor in who agreed with me and my reasoning (as self care and walking were becoming increasingly more difficult and I just wanted a little something to tide me over while the mtx hopefully gets to work). My liver result were flagged, so my dose of mtx will be smaller and built up over longer so as not to irritate my liver further. To be honest, I do wonder if I'd had a particularly good bottle of red the day before my bloods, hence the result! Starting at 10mg and built to 15mg over 6 weeks when I have my next appointment to see how it's going. A Folic acid tablet given to take the day after with the advice to call her if the side effects were bad and she could increase it. Blood tests have to be done fortnightly and I can track them on the website! Took the MTX last night with a feeling of doom!!! It's now the afternoon of the following day and I feel reassuringly OK!! Very slight nausea - but that's possibly due to eating McDonalds at 9pm last night! I'm tired and little light headed, but other than that, no problems so far!!! And as for the steroids - I can move my fingers a little bit better today - so very happy days!!!

Hope this offers reassurance to anyone yet to have their appointment xx

[Hidden]

Hi there,

Welcome to the group. I was diagnosed with RA way back in 1987 at the age of 36, and with 5 childen. It was several years before I was put on Methotrexate. I was started on NSAIDS at first, then Sulphasalazine. There are so many drugs available now. If Methotrexate makes you feel too bad (I take folic every day except for the day I take MTX) you can be shown how to inject it subcutanously youself. I used to do this, but as the dose got higher, my liver was affected. I was on 35mg then. Back on tablets now, 7.5mg but I'm on Leflunomide and Rituximab too. Are you Seronegative, or Seropositive? The NRAS webside has a wealth of information and booklets you can downoad, or order through the post.

xxxx

[Birminghamowl in reply to Hidden]

Thanks for replying!!

I'm 47, 4 kids, 2 have left home and 2 teens. It has been a very speedy diagnosis, though now looking back, it's probably been there a while! I'm sero positive. I'm not sure what that means. If you can throw some light on it....... 😊

[Kim-NRAS NRAS in reply to Birminghamowl]

Hi Birminghamowl

This article on the NRAS website might help: nras.org.uk/seropositive-se...

Best wishes

Kim

[Birminghamowl in reply to Kim-NRAS]

Thanks - had a wee look - a little clearer - I think!

[Moomin8]

Hi- you sound very positive ('scuse the pun😁) which will hold you in good stead. I too am sero-positive which is to do with your blood results - which I am impressed you have access to online! As regards to folic acid, we all have different advice as to when to take it: I have mtx (by injection now-metoject) on Monday and start folic acid Thursday through to and including Sunday. Good luck with your journey and welcome ☺

[Birminghamowl in reply to Moomin8]

Pun excused!!!!

Signed up for the online access today and some of my blood results from Wednesday are already on!!

[Roxymagz]

Hi i also started 10mg mtx yesterday afternoon n also felt apprehensive about taking it but i also feel fine. Maybe slightly nauseous last night when getting into bed but thats it woke up fine this morning.Read such bad reviews about it but just goes to show everyone is different! 😆

[Birminghamowl in reply to Roxymagz]

Yeah!!!!

Hope your still feeling ok today? Was quite grumpy when I got up this morning, but it passed and all is well

Let me know how it goes for you

[Gnarli]

Hi Birminghamowl and thank you for posting such a positive (sorry) account. I'm really glad you have had no adverse effects from the MTX but also sorry you have to take it. Welcome to the gang! Hugs

Jan

[Birminghamowl]

Hi Jan - that's me positive all the way - mostly

Hope you are well

[nomoreheels]

Thanks so much for listing your experience BO (oh, that's no good, can't abbreviate your name to save fingers a little!). I'm seropositive, been on MTX 8 years, folic acid the day before to start with then the day after was added & now take them every day except injection day. It's my Rheumy's preference 6 days a week, I'm sure only so it doesn't bung up the helpline with people needing to increase it, but it goes to show it's up to the prescriber how many are prescribed, it's off-licence so there aren't any set in stone rules.

I hope you do well on it though. Don't know if your nurse included it but a word of advice if you weren't.... though it may have been said in jest, try to limit or leave the alcohol until you're a few weeks down the line with your blood results. It's just to see how your liver behaves, particularly as you've to start on a low'ish dose because of rogue LFT's anyhow. I've needed to go on to injections, had my dose refused & other DMARDs added because of my liver objecting & I don't drink!

I think everything else I wanted to say had been covered except I hope it serves you as well as it has me. 😊

[Birminghamowl in reply to nomoreheels]

BO positive 🤣

Thanks for your experience and advice. Have decided to give up alcohol for the time being as my body had enough to deal with and it can only do good.

Liza

😊

[Shazz10]

Hi Birminghamowl

Glad your first appointment went so well. It's very daunting starting with mtx...I was very anxious taking my first dose which is why I joined this forum but was so encouraged by everyone here. I'm a month in now and feeling great So much so that I'm returning to work in Monday after 3 months off. Unlike you I'm sero negative..but like you I'm very positive !! I'm looking forward to my next rhuemy Appointment as I was a bit like a dear in headlights at my first one as it was before I found this forum and I knew absolutely nothing about RA so just was grateful to finally have a diagnosis.

I had a lot of nausea buy got anti sickness meds prescribed and have none now. Try to drink plenty of water when you take mtx as this does reduce headache/nausea or that 'hungover' feeling. I take folic acid just once the day after mtx too though it seems very varied the advice everyone gets about folic acid.

Best of luck to you and I hope your hands/fingers continue to improve.

Sharon 🌸

[SoulmanPaul]

Hi Birminghamowl,

Just wanted to say hello as I'm also from Birmingham. I was diagnosed in 2015 at the QE hospital. I was surprised you had to battle for the steroid shot as I thought it was standard procedure to have a Depo Medrone shot-given that it can take quite a while for the MTX to start working. Although I've never been much of a drinker, my liver scores are always on the high side and they advised me to stop drinking completely-which I have. Don't need a dodgy Liver to add to my woes! I started on 10mg MTX increasing to 15mg. I was also taking Hydroxychloroquine daily. I had to increase Folic acid to 3 days as I was getting mouth ulcers-a typical side effect of MTX-no such problems since. I'm currently in the process of swapping Hydroxychloroquine for Sulfasalazine as my condition's been worsening recently so...fingers crossed....well....if I could cross em!

Paul

[Birminghamowl in reply to SoulmanPaul]

Hi Paul!

Where in Brum r u?

Thanks for replying. They were much keener for me to take the tablets for some reason. Have survived the first week of mtx, just a bit more tired and spaced out than usual, but so much happier than my movement has dramatically improved - thanks to the steroids I assume. Sorry to hear you're having a rubbish time just now. I'll cross my fingers you get better soon - the joy of being able to do simple things, couldn't have done it this time last week!! Maybe bump into you at the QE 😉

[SoulmanPaul in reply to Birminghamowl]

Hello again.

I'm in Kings Norton how about you? Glad you're doing well-the steroids do make a big difference. Wish I could still take them! I had a bout of Shingles last year and as it was a few days after a steroid jab it was assumed that was the trigger so...no more steroids! Don't let that alarm you though-the jab is a big dose in one go and that may have been the issue. There's a good chance of our paths crossing as being on a new drug I'm back on fortnightly bloods!

[Birminghamowl in reply to SoulmanPaul]

Oh no - gutted about the steroids😳

I'm in Hall Green, so not too far from you. I'm on fortnightly bloods too, off up there again on Tuesday. Loving my new rock n roll lifestyle 🤣

[SoulmanPaul in reply to Birminghamowl]

I was due for bloods next Tues too but it's been moved forward to tomorrow. Been taking daily Naproxen and its affected my platelet count! There's a downside to everything it seems