Starting methotrexate : Thank you for all your kind... - NRAS

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Starting methotrexate

Sunnyseas profile image
12 Replies

Thank you for all your kind & helpful replies on this topic. First dose was ok until second day afterwards, felt exhausted. I work full time and have a volunteer role once a week. I’ve been given a few months break from volunteering while I get things settled but can see now that weekly mtx isn’t going to allow me to continue. I don’t feel I have the emotional strength to do it anymore either. It’s hard giving in to this and accepting a new ‘normal’ that is unpredictable, a bit isolating, frustrating, and a time when you need to be selfish to get through 😞 ss

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Sunnyseas profile image
Sunnyseas
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12 Replies
Bootoo profile image
Bootoo

Go with your body, if it says its tired rest, some days you will feel you can climb a mountain but you will pay later. Try not to over do things, you will scream and yell, laugh and cry but eventually you will work out what is right for you. Be selfish, ignore the ignorant, you'll get there in the end

🤗

Soundofmusic52 profile image
Soundofmusic52

I no how you feel I had to go partime I liked my job now I am struggling to do 12 hrs a week it’s so annoying 😞

allanah profile image
allanah

You'll find out what is best for you. Last day of work at night is good so you can sleep and rest next day. For a lot of people it's easier after a few doses x

It will get better as your body adjusts . Like you I am sometimes tired but it’s nowhere near as bad as it was . You will find a day or time that works for you like the medication for RA it’s trial and error. For me drinking lots of water the day before, methotrexate day and the day after helps . I take my meds at a lunch time so I’m tired in the evening go to bed and by the morning it’s tapering off . Your doing the right thing taking time off to adjust. 🤞things improve and the MTX helps.

helixhelix profile image
helixhelix

You may well adjust over next few months and find things are manageable. Don’t close off doors just yet. And maybe you can drop a few hours at work for a month or so?

charisma profile image
charisma

It is horrible when we realise that the effects of RA or its treatment means giving up specific worthwhile activities and interests but better to take care of of our health. I hope the MTX will be effective to quell RA and get you much more comfortable.

Boxerlady profile image
Boxerlady

I had to cut back on work for a while when first diagnosed but was able to do so without making it permanent (one of the few perks of being self-employed!)

Nearly 2 years on, things are much better and I'm able to do more again so never say never! 😉

Just take it easy and don’t be too hard on yourself. Get some counselling too, this is life changing stuff and you need to offload xxxxx

runningbracken profile image
runningbracken

I was the same Sunny. Hard to except the change. Love working but struggle. If its not the tiredness its the soreness. Lots of rest and water helps

AgedCrone profile image
AgedCrone

When you start a new drug & it knocks you sideways & you don’t get immediate relief ....it is only natural to think that drug is not going to suit you...but do try not to to make the decision too soon that Mtx is not going to work for you .it can take 12 weeks to kick in ....,& it really is worth the wait.How much Folic Acid are you taking? Are you taking in plenty of liquids?

Talk to your rheumy nurse.

For most people they don’t immediately wake up after only a few days on any new drug & suddenly find they feel better. Controlling RA is a marathon not a 100m sprint......

Mtx can take a good few weeks to start working.......it’s then you suddenly realise you are feeling better....do try to persevere for a few more weeks......I know being a conscientious employee you won’t want to take time off work....but it really is true......if at the beginning of your RA journey you are a bit selfish & listen to your rheumy team & stick with a drug for longer than one or two doses......you are then giving yourself the best chance of getting most of your mojo back.

What you are feeling now is not your new normal ...it is how uncontrolled RA feels...once you get past that feeling ......you will understand that RA drugs often work slowly.

You don’t want to start the cycle of giving a drug a “little try” & still be doing that this time next year .....with drug number 6 do you? That is debilitating & really drags you down.

Look after yourself...you will find the drug that suits you soon.......it might even be Mtx.

Flor1rence profile image
Flor1rence

It's early days but hoping MTX works for you over time like it did for me. good luck and don't feel selfish stepping back for a while 😊🍀x

I'm so sorry to hear how you are feeling. It's a horrible time when you are trying to get RA under control, but if you are going to have any worthwhile life you must get it under control. MTX is the gold standard treatment for RA and generally is kinder to our bodies than other treatments. Everything AgedCrone says is true. You really can't judge on one or two doses. MTX can take 3 months to have its full effect and many people find that long before then their bodies have adjusted to it. This is only my opinion, but I'm not sure, at this stage, that the alternatives are any better. See what the rheumatologist says.

It's possible that the exhaustion is caused by the uncontrolled RA rather than the MTX. That was my experience. It was Prednisolone that got me through at that time. Have you been given that? A short course might work wonders, People have various strategies for minimising any unpleasant side-effects of MTX. I take mine at the end of my evening meal and that works well for me.

I hope you find the strength to continue . x

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