Starting Methotrexate : hi everyone, I was officially... - NRAS

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Starting Methotrexate

Matt6096 profile image
15 Replies

hi everyone, I was officially diagnosed with RA in June of last year. I have since being seeing a Rheumatologist and put me ob hydroxichloroquine which has helped but only to a certain degree. The rheumatologist is now planning to start me on methotrexate next week. Now I have heard a lot of good things about the drug have also learned that the can some quite unpleasant side effects. Any advice or anyone who has been in this situation before then any advice or things to watch out for would be greatly appreciated. Thank you all, 🤞I get some improvement without too many problems.

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Matt6096
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15 Replies
nanny_bee71 profile image
nanny_bee71

I think you will find a lot of info regarding side effects and the pros and cons of taking methotrexate if you click on related posts on this sites. We all have different reactions to the medication prescribed. I have been on methotrexate for 6 years now and not had too many bad reactions apart from feeling very low from time to time. However, I am now at the point where it is having little effect on the RA so am waiting for change of meds. Good luck with your continuing journey with RA

Matt6096 profile image
Matt6096 in reply tonanny_bee71

thank for the advice, I will search this site for more info on side effects and how different people have coped.

bpeal1 profile image
bpeal1 in reply toMatt6096

Just be aware when searching this site (and other similar ones) that the vast majority of people posting on here are doing so because they are having problems. Therefore you will find lots of negative posts about methotrexate. The vast majority of people taking it with no problems are busy getting on with life not posting here.

Hopeful1 profile image
Hopeful1

Hi Matt. Have you looked at all the information on methotrexate on the NRAS website? It is the most commonly prescribed treatment. You are very closely monitored with regular blood tests and any ill effects can be quickly picked up. People are sometimes more tired day after taking it (if weekly dose) so good to plan which day suits you best for that. Often advised to take at night to sleep through any initial side effects. But it is and has been a wonder drug for so many of us. This site is so supportive if you have any specific questions but largely populated by those with problems while thousands just get on wth thankfulness for the benefits of our drugs.

Gaz227 profile image
Gaz227

I asked for a once a week injection (meaner pen) rather than tablets , very easy to do and painless . Less chance is stomach issues , the first few months I was very tired the day after , I take 5 mg folic acid 24 hours after the injection some people take folic acid every day except MTX day I think that depends on how you get on . Good luck it’s not as scary as a lot of people make out, it certainly given me a better quality of life . 👍

Matt6096 profile image
Matt6096

thank you, I’ll ask what the rheumatologist recommends, re injection or tablets

AgedCrone profile image
AgedCrone

With all the DMards prescribed for RA you just have to “suck it & see”.Unfortunately there is no one perfect drug that can be prescribed for everyone.Methotrexate can be the wonder drug….or not!

The one saving grace is for those trying to find what suits them today, is that there are so many choices.

I always took my rheumy’s advice & had many good years on Mtx,….I hope it suits you as well…but give it time…don’t expect a miracle in days.

hazelcats profile image
hazelcats

I only started methotrexate 2 weeks ago after recently diagnosed. Reading others advice, I inject in the evening. I am extra tired the next day. I already have gastric problems so was advice by the nurse to take folic acid for the 3 days following the injection. The side affects have been far less than I feared so far. Willing to give it a good chance to help

Boxerlady profile image
Boxerlady

I've been on Methotrexate since diagnosis in 2019. Started on tablets and moved over to injection simply to get a higher dose (some of the efficacy of tablets is lost in the digestive system.) I've never had any stomach issues with it but get the "hangover" the next day - tired and "foggy". That side effect seems to kick in after about 24 hours for me so I usually inject early evening and then veg out on the sofa the following evening. I did get a few mood issues at the beginning but they were sorted out by increasing the Folic Acid from once a week to six days a week. Together with Hydroxychloroquin and Sulphasalzine, it's working well for my RA so I'm happy to deal with the minor inconvenience of a slightly bleugh evening. Tbh, I'm pleased that I didn't read up on any possible side effects before starting these medications as inevitably, you find people posting more about problems than the fact that they're doing well which can give you a falsely negative impression. I'm just grateful to live in an age when these medications are available to us 😁

Matt6096 profile image
Matt6096

thank you, I will look on the positive side and hope for a good result

welsh12 profile image
welsh12

I take it first few weeks very tired little nausea then it settled touch wood it's working and I take hydroxychloroquine also. People worry about methotrexate but hydroxychloroquine also has side effects have your eyes monitored annually and report any other side effects if you are slim ensure you are on correct dose for your weight. As I was on Max dose daily when should been on 100mg less daily.

Beechwood1 profile image
Beechwood1

Hi Matt, This link will give you further useful information: nras.org.uk/product/medicin... and the lovely ladies on the NRAS Helpline team are available for advice, a chat or just a sounding board. Call them 9.30am-4.30pm Mon-Fri, 0800 298 7650 Good luck!

Happy5 profile image
Happy5

Hello Matt good you've been diagnosed and treatment decided.

First year is a bit of a roller coaster. it can take about 3 months for your system to adjust to MTX and show signs of working. I started with tablets was changed to injections (weekly in both cases) eleven years ago and it mostly provides reasonable quality of life. Should you feel it's not working then contact the RA dept so they can offer alternative. In my experience contact earlier, then later so intervention can take place , not found waiting has ever improved the problem.

Keep in mind doctors diagnose and prescribe the RA specialist nurse provide your care, so speak with them about any concerns, and they welcome questions.

All the best 😊

virtualreality profile image
virtualreality

Methotrexate is commonly prescribed for RA so you're in good company. Try not to read too much about possible side effects (easier said than done I know) so that you go into it with an open mind and see how you go - if it doesn't suit you it can always be changed.

Some good advice above about choosing a day that suits you in case you need to take it easy the day after. Generally I think the advice is to take is after a meal to reduce nausea (if you start on the tablets). I always take mine in the evening and go to sleep soon after each dose. It also seems to help to be well-hydrated around each dose - so the day you take it and the day after.

You will probably be prescribed folic acid alongside the methotrexate because that helps to reduce common side effects like nausea - the amount varies from one dose a week to six days a week and will depend on your methotrexate dose and what you need. If you're started at the lower end with folic acid and find you experience nausea or other side effects, you can ask for it to be increased which can make a big difference.

It's a more powerful DMARD that hydroxychloroquine so hopefully it will really help with your RA symptoms. Wishing you all the best, I really hope it's effective for you.

lindyloo2018 profile image
lindyloo2018

Hi, I have been taking mtx and hydroxy for 6 years. the injectable mtx is better but you will need to ask for it as by default we get the tablets. I always take tabs straight after my breakfast so they are not on an empty stomach = less problems etc, you need to go to your local hospital eye clinic for eye checks after you have been taking hydroxy for more than 5 years. the hospital eye test equipment is better than the opticians although specsavers always did my eye tests before that, I pay £10 for the extra eye test because of hydroxy.

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