Confirmed RA diagnosis - mixed emotions!!!

Hi all, thank you again for all your helpful advice in prepping for my first rheumatology appointment with consultant - who I'm releaved to say was excellent. She has confirmed a diagnosis of seronegative RA - currently 20 joints affected - so starting me on Methotrexate asap after chest x-ray etc.

In some ways such a relief to know that it is what it is - but now trying to get my head around treatment!!! Bit scarey reading up about Methotrexate in terms of what type of drug it is and side effects!!! Again wondered if any one has any advice about managing these for a first timer?

Thank you 😊

21 Replies

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  • Hello Julied24. So sorry you belong to this club, but I am happy to greet you :)

    Please know that with this support group, you are not alone anymore. We are all scared when we see the mtx pills that they want us to swallow. We all research the side effects and then we are terrified....So I'm here to tell you that everything is going to be OK.

    My mtx day is friday. So every friday I fill my water bottle up with water and then I take my mtx. I consider mtx day as my day to be lazy. I curl up on the sofa and watch TV. I drift in and out of sleep. When I wake up I take a big drink of water, even if I'm not thirsty. I found keeping hydrated keeps the headaches away the next day...and remember to take your folic acid as your doctor prescribed.

    You will be OK. Please don't worry as we are all with you, supporting you. Soon you will be advising others on mtx.

    All the best to you

    Sue

  • One step at a time...it takes a while to come to terms with having a chronic disease, so be nice to yourself and don't try to be superwoman.

    As for MTX, they do have to tell you every possible side effect - but it's actually very well tolerated by most people. I was on it for 2 years before I got my first side effect (mouth ulcers) and they went away when I swapped to injections.

    As suzannedale says, drink lots of water. Follow your instructions for folic acid, and try not to anticipate the worst. Look forward to it tackling the pain instead! I take it last thing at night, and make sure I don't have to get up early the next morning. I wouldn't enter a crossword competition the next day, as slightly slower than normal - but that's it for side effects.

    For many people it helps to build up the dose slowly over a couple of weeks, so ask about that when you get your prescription.

  • Hello there

    I was terrified when I started MTX too. Now it's been almost 4 years. I take it at night on Thursdays, chosen for work-related reasons. I do feel a little sluggish and slow the next day, but that's all. You'll build up slowly to a full dose and will probably hardly notice it.

    I was frightened by all the online reports I read. Remember that most people only post problems. I'd try to keep an open mind and see how it goes. The chances are that it will do its job!

  • Hi Julied24 and welcome to the gang. Of course you are scared at the moment. I suspect we all were at diagnosis so you are not alone. I only started mtx in January this year with a 15mg dose and have built up to 25mg. I take it with my evening meal and, so far, the side effects are (drum roll here) practically nothing. I used to feel a bit icky but now I'm just a a tiny bit slower. That's all. We are all different so it's to be expected that we'll all react differently. If you need to ask anything this forum is crammed with lovely, informed and knowledgeable people happy to help. Big hugs

    Jan

  • Hi Julied24. Welcome. Like you I am also recently diagnosed and seronegative. Took my first MTX last night, felt very sick with strange hot and cold flushes and metallic taste in mouth (which I usually get when I'm about to vomit) but in fact this seems to have passed off in the night and apart from a headache I feel ok so far. To be honest I have been feeling so unwell and fed up of pain that I just want to get on with treatment.

    Having read the replies I am now drinking lots of water!

    It is great your rheumatologist is good. I am interested you know they specified 20 joints. I know I have at least 36 affected (counting them myself) but feeling a bit lost in terms of the hospital not recording this. I am falling between various people as many of the consultants are retiring so I have no one assigned that I have met. No one has ever counted my affected joints (as far as I recall) and yesterday when I saw the nurse there was no interest in which joints currently hurt or any of my symptoms. It was a case of, we know you have RA so let's get on with treatment and we don't really need to look at the specifics. I don't know if this is normal but I am feeling that basically I am left carrying a lot of info myself that no one takes note of, even if I mention it. For example, I had a Doppler scan as part of diagnosis and they only looked at 2 randomly chosen joints as this was enough for them to diagnose me and there is always massive time pressure in the clinic - so they said we have enough to diagnose you from this and didn't bother to check how many other joints had the same inflammation level. Now this has been recorded as if it is only those joints that are showing symptoms, as I have seen the letter to my GP. This is wrong and worries me.

    Did you have a DAS score done? I did not, but understand this is meant to happen. I questioned it as someone had written in my notes from before that my DAS is 5.6, I asked how did you score me for that as no one asked about my own scoring of the pain which is part of reaching your DAS. They said we would automatically give you the highest score since you are clearly in pain. This seems a bit generalised to me?

    I am finding it overwhelming getting everything covered in the time in the clinic and just processing the situation as well in terms of, is this really happening to me and what is going to unfold?

    Sorry this has turned into an anxiety download!

    I found a good website by Canadian Arthritis Research for newbies to MTX, if you google it there is a whole website on deciding if MTX is for you, called ANSWER:

    answer.arthritisresearch.ca/

    It did scare me but the RA damage scares me more so I am starting treatment as well as life and diet changes, although I am already pretty healthy eating and don't drink. Am going to get this book called The Autoimmune Solution by Dr Amy Myers (I think) which is meant to be great.

    amazon.co.uk/Autoimmune-Sol...

    All the best

  • Hi blightyfivestar

    Thank you for all this amazing information.

    Just wanted to say that I actually took a self-assessment joint diagram that I had printed off and completed with me (used NRAS info on the DAS28)

    nras.org.uk/the-das28-score

    So I understand in this DAS score your ankles and toe joints don't count. So I was pleased when the consultant reassessed them all again so I knew I had done it right (NRAS booklet was really good 👍) But she didn't tell me my actual DAS score though.

    Maybe you could take the NRAS DAS28 booklet to your next clinic and ask them to assess your joints and complete it for you, as I understand they should be doing this regularly anyway as part of best practise!

    Sorry, aware I'm a real newbie with this so I'm sure there are others in the forum with better answers!

    Hope you get it sorted 👍

  • Hi I was where you are 2 yrs ago, was so afraid of MTX, all I could think of was 'this is used for Chemo', but only a tiny dose is used for RA so don't worry about that! Take the Folic acid tabs they alleviate any nausea and keep hydrated especially for a day or two after your weekly dose...

    It takes up to 12 weeks to start working so stick with it and don't lose heart you will feel better before to long. Try and do gentle exercise, swimming is a good all rounder, Tai Chi ,Yoga,. I have two dogs and I found Walking on grass so much easier than on pavements.xx

  • Hi,

    MTX is a good drug (despite it not working for me) for many people. I was onto injections quickly (*very* simple process) as the tablets made my stomach feel like 1000 alarmed butterflies. I did have the next day feeling queasy but it was quite bearable.

    If cars came with the standard set of risks as detailed in PIL sheets - would you drive?

    "You may be involved in a fatal crash while driving the car. There is a risk you can cause fatalities whilst driving the car, to yourself, your passengers, other road users and pedestrians. Animals can die in cars in hot weather. You may sustain life changing injuries by the actions of other car users."

    This all needs to be balanced against the benefits of mobility to shop, see friends/family, enjoy outings and a sense of freedom & choice.

    If you feel rough on the drug, talk with your consultant. and as everyone else says, drink lots of water!

    MJ

  • Hi I was the same when first diagnosed after sitting and thinking about it how all had changed after how fit I should to be but have had more than my share of broken bones since an early age

  • Having confidence in a listening and supportive Dr or specialist nurse is so important, so that's a blessing even if the RA diagnosis isn't. I'm very anti-medication but have been fine on M/X injections (couldn't tolerate the oral tabs after the first 6 months). Actually I find the jabs easier than the fiddly little tabs. Not much appetite the following day or so, but trying to make the most of that as a weight loss opportunity!

    So, read the side effects leaflet (once!), drink water and feel positive. Hopefully you'll feel the benefit after a few weeks

  • Good luck with the treatment.I started on methotrexate but got a lot of sore throats.Went onto Sulphasalazine for 2 years but found it wasn`t really effective enough and was finding strands of hair on my pillow each morning.Ihad a few flare-ups after that and was finally put on a biological injection once weekly.They call it etanacept or enbrel and i have been a lot better now.Ask me anytime you have any probs.

    Kath a young at heart 69

  • I missed your introductory post so a big welcome from me!

    Well I hope your chest x ray is clear for you to start MTX, it's been the gold standard treatment for around 50 years for a reason. Understandably reading up about it can be disturbing if you've not needed to be prescribed specialist meds before, not least that it was first developed as a cancer drug but in common with other meds it was found at much lower doses to get effective for another condition entirely, autoimmune diseases, RD being one but generally the side effects aren't nearly as bad as you'll have read. Do remember too that all possible side effects need to be listed if we're to be informed but maybe you'll be one of the lucky 70% who don't have any. Do also remember that usually forums like ours tend to used by those struggling so it's not a good representation of what most are doing, getting on with their lives! I think because it was my second DMARD I wasn't too bothered about starting it, I just wanted to feel like I did the year before, HCQ failed me unfortunately but hey that brought me to MTX, my most effective med to date. Do bear in mind it's no quick fix though you may notice subtle changes as you near the 12 week mark.

    It's been a very effective DMARD for lots of us, I've been on it 8 years, the first on tablets, 7 on injections. That's another positive, if you're unable to cope with side effects such as nausea we do have the option of changing to injections as this way the med goes straight into the bloodstream & not through the gastro system, it's also more effective. I had to change to injections because my liver didn't like an increase to 20mg & because less of the dose is lost I was able to reduce to 17.5mg, my current dose with the same positive effect.

    You'll also have been prescribed folic acid, this is to help ease any side effects, doses do vary from 1 x 5mg weekly to 6, the dose I'm on. Keeping well hydrated helps as does spreading your weekly MTX dose throughout the day. I took mine with meals, I was on 15mg so took 2 with each main meal. So try not to predict side effects, concentrate on you sailing through to being better.

    We're here if you have any specific questions, we're better than any write up in that respect, you'll receive personal experiences not maybe's! 😀

  • Hi and welcome! I'm six years in with my sero positive RA. Like you I was petrified of methotrexate, in fact wouldn't take it at first, preferring to start with salazopyrin. I've been on methotrexate for 10 months now and honestly haven't looked back!

    As others have posted, I pick an evening where I know I don't have to be busy next day, take it after my evening meal and have an early night. Also plenty of water! I don't get any side effects, just in the early days I had a little head ache and tiredness but now don't even get that.

    Make sure you take your folic acid next morning though!

    Good luck, Hope it works as well for you as it does for most of us and let us know how you get on!

    Best wishes

    Ally x

  • Hey Julied... I started mtx in November 16. I was on 16mg increased to 20mg per week now until July when I switch to biologic injections. I think I would prefer the tablets to be honest.

    As someone who wouldn't take even a paracetamol I was devastated. The people on this forum helped me get through as well as my fab family. Side effects, hmmm, touch wood, so far have been bearable to be honest.

    Not sure if anyone else can chip in here, but please do, I space out my dose; I take four mtx at teatime and the rest later and always with food. However, please follow your Rheumy's instructions on how to take.

    Lastly, try and remember not to take your Folic Acid on your mtx day. Made that mistake.

    It really does become your norm and you realise you got to do what you got to do to get rid of the pain.

    To summarise : eat well, take your meds, include good supplement if need be and relax (no to stress). We are so blessed to have access to good medication.

    Hessie X

    Happy Easter to one and all 😊 x

  • Yes, when I was first prescribed MTX my Consultant recommended I didn't take my dose all at once but to divide them through the day with meals. I was on 15mg so I took 2 with breakfast, 2 with lunch & 2 with dinner & had no side effects until I needed an increase to 20mg when my 1 folic acid the day after was increased to 1 the day before as well. That was when I started injecting & my dose reduced back to 15mg.

  • Once again just blown away by all your replies, advice and encouragement - thank you ☺

    I'm beginning to get my head around it now 👍and as you say possitively focussing on becoming pain and stiffness free is the key (Lots of pain today with it turning a little chillier!!!)

    Hope you all have a great Easter 🐣 and thank you again. So good to know I'm not alone 👍☺

  • Hi Julie. I joined this forum today and came across your first post and word for word it is exactly my experience 9 weeks ago.i couldn't raise my hands to brush my hair and nearly pulled so k from wall having to use it as leverage to get off the loo! After two visits to GP and three a & e visits and one admission to hospital for 3 days I finally saw rheumatologist last week and have been diagnosed with seronegative RA too. I was originally put on 40mg of pred and this was tapered down over weeks and felt like a miracle cos all pain went though swelling and mobility took 5 weeks or so but as soon as I got down to 5mg pain retuned. I'm back on 10mg now and pain is tolerable and I just minutes ago took my first mtx tablets with the help of all the encouragement I've received today on the forum. having been too scared to all weekend which was when I intended to start them.

    I felt such a relief like you to get diagnosed as I felt like I was hit by a train out of nowhere and have been off work since but that quickly turned to anxiety about the treatment but I have been reassured today that that's normal and to just go ahead and bite the bullet. Hopefully you ll be able to do the same when the time comes.

    Wishing you lots of luck.

  • Hi Shazz,

    Thank you for your post, as you say its such a help to know that you're not alone in this!!! Can't believe how similar our stories are!!!

    I sadly got the info the consultant gave me muddled up (still on really high dose of pains meds so not surprising!!!) so I won't be starting methrexate until next week now. The consultant wanted to increase the pred up to 30mg again but I have serious steroid induced insomnia (only sleepin 3-5 hours max at the mo and thats just on 20mg!) so reliant on co-codamol at mo to keep pain at bay.

    Really hope you've been ok today 👍 so good you took the bull by the horns and took it! Hears to it doing its job and to both feeling better and back functioning again ☺

    Very best wishes,

    Julie

  • Hi Julie ....Hope you are doing well today. I'm doing ok...Mobility good and pain tolerable and anxiety over taking mtx subsided. Have had a headache on and off since I took mtx though and a little nausea but nothing that I can't cope with so am so glad I got the courage to go for it. I don't know if it will be the same for you but my pred will be tapered down to zero over next two to three months, all going well, and I cannot wait as like you the insomnia is crazy. My insomnia has been worse on 10mg than on 40mg... Maybe it relates to the time I've been on pred rather than the dose..Not sure what other people's experience has been. It may not follow that you will have worse insomnia on 30mg ??

    Anyway I'm feeling a lot more positive since being diagnosed so much so am contemplating returning to work in a part time basis at least very soon, so I've something to aim for....Dunno if that is realistic..Every day is different for me at the moment...Pain is tolerable but fatigue and energy levels are on the floor.

    The events of the last few weeks have been a lot to get my head around at times but it's been great knowing I can relate to and connect with people here.

    Good luck with your mtx when you start it next week.👍👍 And know that if you are awake in the wee small hours there's a very good chance I am too...And lots of others on here too I'm sure.. so you are not alone.

    Hugs

    Sharon

  • Hi Sharon,

    Pleased to hear your doing ok after your first dose👍As you say it does take a bit of getting your head around!!!

    Sadly had an awful day yesterday - went shopping to get some much needed new shoes as inflammation really bad in toe joints at the mo (found fab pair of skechers 👍) but overdid it as I went to the supermarket as well so pain just went off the charts!!!! Ended up having an awful row with my amazing husband as the pain was so bad. Felt so terrible 😦as he's being so amazingly supportive!

    So think I am going to have to ask docs if I can increase pred just while I wait for mtx to kick in as can't go on like this!!! 60mg Codeine not touching it at times!!!

    Thankfully once home I did managd to get pain back under control even tho I still had 2 hours until next dose of codeine. Been trying a bit of mindfulness meditation and it's actually really helped 👍plus resting up and not walking!!!

    Ive also started gluten free diet and omega 3 oils, as Ive read this can all help too 👍.

    Hoping to start mtx friday - can't start sooner as I currently look after my father-in-law monday to thursday as he's just been diagnosed with early altzeimers. I also have my own mother really ill at the moment so the nursing home where she lives have just got the the palliative care team in to sort some better pain relief for her. So I'm sure the stress of all this is not helping either!!!

    Hope you continue to do well and all the very best with gradually getting back to work.

    Cheers,

    Julie

  • Gosh Julie you really do have a lot on your plate at the moment. Poor you ! Sorry to hear you had such a bad day but on a small positive note glad you got your fab Skechers! I have to really try hard every day to find a positive note to focus on no matter how small amongst all the chaos and it sounds like you had a chaotic day.

    Might be worth going for a steroid increase like the doc suggested. I was on codeine and it didn't touch the pain at all. The only pain killer that helped a bit was difene injections that I had whilst hospitalised but I couldn't continue with it once I left hospital as I was on a blood thinner for a blood clot and it clashed so have been on only pred until I started mtx and it has been brilliant for the pain a d inflammation but still I can't wait to be off it.

    I'm sure you supportive husband has forgiven​ your outburst yesterday, don't dwell on it. He can I'm sure see what you are going through along with both of your parents issues it must be hard for both if you. I just live with my teenage daughter and bless her I've snapped at her loads (sometimes she's deserved it...Teenagers!! ) I've had my family come to stay, they all live far away, at various times and I'm sure they thought I needed more mental help than physical help at times too...But they have been so supportive. My brother is coming in Tuesday for a few days and am so looking forward to him being here now that I am on more of an even keel...But things could be different then either...One day at a time.

    I suppose the key to mtz is taking it at the right time that suits you. I may have to try to move my day to fit in with an eventual​ return to work.

    Keep up with the meditation I've recently started that too...Not very good at it though but I'll keep at it.

    Hope today is a better day for you and good luck with your my on Friday.

    Sharon x

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