Newly diagnosed...RA and possible PMR

Hi all..I am new here and have just read lots of posts which have been really helpful. After 3 months of steroids which was the only thing to have any effect on my pain which is mainly shoulders arms and hands but also knees, and three hospital stays i have finally been diagnosed with RA and prescribed methotrexate. I intended to start this on Friday but have put it off every day since being anxious of side effects. I was so relieved to finally get a diagnosis but this quickly followed with anxiety about the treatment and how to manage a return to work whilst taking this medication.

Does anyone have any info to share on this drug? Are side effects tolerable? Or any tips to share. Many thanks.

22 Replies

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  • I'm on MXT I usually take it on the evening before my days off which is Tuesday as the next day I may feel very tired and not want to do very much.

  • Thanks for replying Matilda. Yea that was my plan to take it on Friday being off for the weekend but I chickened out. Although I'm off work at the moment i was intending to tie in with work schedule being off at weekends but think I will have to just go for it tonight and wait and see how it affects me. Don't know why I'm so nervous to start it...Think these steroids have my emotions all over the place. Thanks again .

  • Hi Shazam and welcome.

    I take Mtx as well as biologic. Like Matilda , I too take mine at night, allowimg me to sleep through some / ant if the side effects.

    One thing suggested here was to drink plenty of water whilst taking Mtx and I concur , this greatly helps.

    I also take folic acid every day bar Mtx day which definitely helps with any side effects.

    I have been on Mtx for a good few months now and apart from feeling a bit sickly the morning after taking them, a bit more tired, I am good with it- it all seems to settle over time.

    There will be lots of others with helpful suggestions to offer you - best of luck with things .

    Marie

  • Thanks Marie. That's reassuring. I have been prescribed folic acid too. I hadn't heard about drinking lots of water so will definitely try that too. I have not even thought about how effective mtx would be for my symptoms as steroids have helped greatly but was just anxious about side effects but will definitely take the plunge and start tonight. Thanks for the welcome and encouragement. Sharon.

  • Sorry , Shazz - not shazzam! Typo

  • Shazzam sounds better!

  • Has a ring doesn't it?!

  • We all can relate to the fear of mtx. I remember begging my rheumy to try it as my other dmards weren't keeping me in remission. Once I had the 4 little pills in my hand, I was scared to death....but I bit the bullet and swallowed. Then I fell asleep....it wasn't as scary as I thought it was going to be....just remember to have lots of water to keep you hydrated. You might not be thirsty, but drink it anyways. I forgot to drink water once and boy oh boy did I suffer the next day with headaches...

    Welcome to the site. Always remember you are not alone, we are always here for you.

  • Hi Suzanne. Thanks for the response..Yeah I've had the pack of pills in my hand the last two nights and then anxiety got the better of me. Tonight's definitely the night! Thanks for the welcome to the site. I only logged on today and already it's been more help than I could have imagined. Between waiting for an official diagnosis and trying to manage pain and being off work it had all got to me so am glad to have had such great support today.

  • Here is a post from a year ago. Hope it helps you relax.

    healthunlocked.com/nras/pos...

  • Thanks again...Great to read I'm not the only one who had 'first night nerves'!

  • I've been on methotrexate for years from 20mg to 7.5 I find I get very tired and when I first started the treatment I felt a bit sick, however the side affects are not bad. So please don't worry. You will start to feel much better and that's what's important. God bless.

  • Thanks ritaalice. I've realised today it's ok to feel a bit anxious about it but of course the main thing is I may just start to feel better....Thanks for responding and God bless you too.

  • Lots! I've been on MTX for 8 years, it was my second DMARD started after my first hydroxychloroquine stopped working. I can honestly say it's kept me moving. Last November I had another other DMARD added, leflunomide but it's MTX that's been the best med for me & many others, even after 50 years since it was found helpful for our disease it's still considered the gold standard treatment.

    I'm on injections, which I'll touch on later, but I used to take tablets divided through the day with meals as advised by my Consultant & that worked well for me.

    You should also have been prescribed folic acid to take. As it's prescribed off license to have when prescribed with MTX there are no regs for dosage so it varies from 1 day to 6 days, just not the same day as MTX. These will ease the most common side effects so if you've been advised to take it just one or two days then there's room for an increase in days you take it, if you have any & if your Rheumy's ok with it of course. The reason folic acid helps is because MTX isn't picky what it works on it can deplete the little folate we store, folic acid is a synthetic form of folate. Folate (B9) is necessary to prevent anaemia as well as the side effects caused by MTX doing it's good work so it's an important little pill, it could mean the difference between continuing on MTX or not if your side effects aren't tolerable.

    If for whatever reason tablets are becoming a problem, be it side effects, particularly nausea, or like me my liver disagreeing with an increase in dose, then injections may be an option. As administering MTX subcutaneously goes straight into the bloodstream it doesn't go through the digestive system as tablets do. This was one reason my Consultant recommended taking my dose with food & throughout the day, there's less chance of tum problems than taking them in one go though some do take their full dose with no problems, it's just what suits you I suppose really.

    Do bear in mind that all side effects must be listed by law, it's the same for any med. Forums such as ours aren't typical of how the majority are doing either, generally they're used by people looking for help or advice, maybe they're newly diagnosed & a bit lost, which is understandable, or just needing help or support if things aren't going to plan. There are some of us who choose to be here even though we're doing well!

    I hope you enjoy being here, we've lots to share so if you've any questions just ask. 🙂

  • Gosh so informative...Thanks so much. Yep i have folic acid to take the day after mtx. I noticed others take it daily. I'll see how I get on with it weekly for now but good to know I can request it more often if needed. It's great to know there are people on the forum at all stages of 'wellness' and I'm sure I'll have lots more questions 🙂

  • Thanks again to everyone for your support have finally taken my first mtx which I don't think I would have done without coming on here today. Bottle of water to hand and folic acid ready for morning. Thanks for all the info and encouragement​ ,😀

  • Hi shazz,

    I started methotrexate 5 weeks ago I take mine Sunday night as I figured I wasn't ruining my weekends from here on in if I got side effects. I would rather be paid to feel crap at work on Monday. I take 15mg so 6 tablets. I have no side effects at all apart from a few spots on my face 4 to 5 which have calmed down now. We are all different and react differently to these medications. Just go for it. You won't know until you take it. I have a PMA and told myself I wouldn't have any side effects. Whether or not it helped I don't know but it helps me. I am due to start taking sulfasalosine aswell this week and am telling myself the same about this next one. Good luck

  • Hi nattynooo

    Thanks for your reply. I have to take 15mg too and I love your thoughts of getting paid to feel crap on a work day rather than a weekend. I was intending to take mine on a Friday to avoid feeling bad at work but you are so right why ruin my weekend! I am trying to work in my PMA and coming on here has really helped. Good luck with taking your sulfasalosine this week too.☺

  • Hi Shazz10. I can understand why you are so concerned about taking this drug. You could not be more scared than I was about taking mtx. Sleepless nights, the lot. So having decided that it had to be better than the pain, I took it with my evening meal with a big glass of ginger beer and - nothing. I felt a bit icky next day but nothing more. We all react differently to mtx but the majority have no or minor problems. Do let us know how you get on. Hugs

    Jan

  • Hi Jan

    I took my first dose last night and apart from a slight hangover type headache I'm doing fine this morning . I drank lots of water as advised but will try ginger beer next time. Ginger biscuits are always my go to cure for nausea too. I'm looking forward now to see how well mtx works so that I can get off the steroids I'm currently on hopefully.

    Thanks for the reply and I hope you are doing well. ☺

  • Hi Sharon

    I was diagnosed in Feb this year and still getting to grips with MTX... I've have 3 steroids over last few months but a bit wary of having anymore 😕

    I have managed to take MTX 3 times over last 6 weeks due to infection etc🙄

    Don't feel like MTX is giving me anything to worry about but I am on initial 10mg dose which should go up to 15mg then 20mg over nxt couple of months..

    Fingers crossed there are no more infections on the horizon so that MTX can start to do its job.

    I hope you get sorted with yr MTX

    Good luck huney

    Sue

    😘

  • Hi Sue

    Sorry to hear you have been having infections. Steroids arent fun. I'm on 10mg prednisolone having been reduced from 40g initially 2 months ago...The only thing that has any effect on my pain which came out of the blue. I get bad night sweats which I think is a result of pred so am hoping mtx works for me in order to reduce the steroids. Hopefully mtx will work for both of us soon enough. Fingers crossed and lots of luck ☺

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