First dose of methotrexate

[katiemills]

Hi everyone , I'm feeling a bit nervous ...... I took my first dose of methotrexate today . Any words of advice , warning, observations would be welcome ! I'm struggling to reduce the pred ( currently on 14-13 mg ) and have become diabetic so my rheumy said the time had come ...........

[Hidden]

Hi Katie,

Did you drink plenty of water with it?

Have a light lunch & just chill try not to think about it too much, l know you have these tiny little pills ready to take & just wonder what they are going to do to you!

You may feel more tired than usual tomorrow, so don’t plan anything you can’t just cancel.

PM me if you want a chat or feel nervous, l’m chilling in/on the bed today.

Kind Regards

MrsN 🌷

[katiemills in reply to Hidden]

Thank you ! No I didn't take plenty of water 😖. I might PM you at some point please ...... my rheumy said that it's usually the next day that you feel grotty .

[Hidden in reply to katiemills]

A full glass at least & although it doesn’t say so, l always just stood up to take mine. I presume you read about not handling the actual tablets themselves, l kept a little shot glass for mine.

Speak Soon xx

[katiemills in reply to Hidden]

😳😳I will read the booklet again ! I didn't spot that , thank you !

[Hidden in reply to katiemills]

The Patient Information Leaflet is well worth reading again & the Methotrexate Booklet also.

Take it steady x

[dancersize in reply to Hidden]

I've been taking mtx since January and never knew not to touch the tablets. I take them with breakfast just as I do the folic acid the other six days. Things you learn.

[Hidden in reply to dancersize]

I just pop them into a Shot Glass, then it’s easy to count them as well.

[Hidden]

Good luck with mxt. You are not diabetic...you have diabetes. Doesn't sound very different but it makes a big difference psychologically so you don't just think of yourself as a fixed thing or define yourself that way. Once you get yourself settled on mxt then perhaps take a look at this....and the forum on the website is useful even if you just lurk for now.

lowcarbprogram.com/

[katiemills in reply to Hidden]

Thank you for replying - that's very helpful x

[Tamtan2 in reply to katiemills]

I have both pmr and gca I had to come off mtx and AA After 8 weeks because of side effects AA had caused me to have a Sliding hiatus hernia Causing breathlessness And distended abdomen I’ve had a endoscopy To confirm and am Now having an operation shortly to repair hernia. Please drink lots of water with AA and don’t handle tablets. I think I have have been very unfortunate as lots of people have no problems just be aware . Good luck.🙏🏽

[PMRpro Ambassador]

My rheumy suggests splitting the dose and taking half at bedtime and the rest next morning - he said it reduced the nausea problem and he must have been right, that was the one side effect I DIDN'T have!

[katiemills in reply to PMRpro]

My rheumy didn't suggest splitting the dose but he did say I might feel grotty the day after taking it 😖. Thanks for the advice .

[Dontwannabesick]

I started 10mg tablets, rising to 20mg. Now on 25mg injection once a week. Headachy for a couple of days after and very thirsty. Keep yourself hydrated. One thing became clear quite quickly, that it's the pred that causes the nausea. I have no qualms about the mtx, I know it's making me feel better and helping me off the pred.

[PMRpro Ambassador in reply to Dontwannabesick]

I know plenty of people who would disagree with you: mtx is the standard approach for RA, few RA patients take pred except for flares, many RA patients on mtx suffer from the nausea and mtx-flu.

[katiemills in reply to Dontwannabesick]

Thanks for replying . It's good to know it's working for you !

[Hidden in reply to Dontwannabesick]

I don’t wish to contradict you you but Methotrexate side effects are known to cause nausea, that’s why people are given an antiemetic to try & if that doesn’t work they can be prescribed Methotrexate Injections so it by passes the gastric tract.

[Dontwannabesick in reply to Hidden]

Hi Mrs Nails. I have mtx by injection once a week, so there isn't an issue with it upsetting my gastric tract. However I take pred every day and like clockwork, the nausea hits me 3 hours later every day.

[Hidden in reply to Dontwannabesick]

Hi,

That’s really interesting, has this always happened?

What dose of Pred are you on now?

Do you take Coated or Uncoated Pred?

Are you on a PPI or other stomach protector?

Do you take any other Meds around Lunchtime?

This is the Detective MrsNails

🕵🏻‍♀️ in me!

Kind Regards x

[Theziggy in reply to Hidden]

"This is the Detective MrsNails" what happened to your retirement???

[Hidden in reply to Theziggy]

Hi Ziggy

I was in/on the bed all of last week, resting, so l was able to answer questions that didn’t tax me 😉

Went out yesterday to David Austin Roses 🌹 it was so beautiful, had a little walk around then had coffee & a scone!

Still lying in this morning 😉 so am taking it easier, promise!

How are you doing?

MrsN

[PMRpro Ambassador in reply to Theziggy]

She's being an angel and covering for me

[Getsomeanswers in reply to Dontwannabesick]

I had a very similar experience. Taken me off injection onto Rumil 20mg nausea stopped. On recent blood tests high level of inflammation in the body now after only 4 mths. 😕 so likelyto go back on Mx.😕 also it has pushed my blood levels up I am type 2.

[Tamtan2 in reply to Hidden]

Mtx injections did not agree with me had 4 rotten days out of 7 every week And got to the stage of being a bag of nerves every week before I took mex and AA Glad to come off but that’s just me. Take care

[Marijo1951]

I've been taking methotrexate since December 2017. I started at 10 mg per week and went up to 15 mg after about a month. I also take folic acid 5 days per week. I haven't had any GCA or PMR flares since I started and haven't had any serious side effects. I find it better to take it at night close to bedtime, as I did find it tended to knock me out if I took it in the morning. On Fridays I set my alarm for 10 p.m. to remind me.

[katiemills in reply to Marijo1951]

Interesting - I've started on 10 mgs Methotrexate but only folic acid once the next day. Maybe taking it at night will be better for me too . I'm glad it's working for you and thanks for replying .

[GerriMc in reply to katiemills]

Oh forgot to add, I have a blood test every two months to make sure the MTX is not affecting my liver. It’s been fine.

[Theziggy in reply to katiemills]

My prescription says to take folic acid 48 hours after Mtx. And to have a blood test a fortnight after starting Mtx.

[GerriMc in reply to Marijo1951]

Me too! Taking it at night makes a huge difference!

[katiemills in reply to GerriMc]

Hi , how much folic acid are you prescribed ?

[xena- in reply to katiemills]

Hi

I’m to take 5mg for the six days and just miss the day of taking methotrexate

I am already on folic acid I’ve been low in it three times the last few years so I don’t know if that’s another reason I’m to take it six days a week

[GerriMc in reply to katiemills]

5 mgs per day, 6 days a week. Don’t take FA on same day as MTX.

[Linny3 in reply to GerriMc]

There sure is a difference in the amount of folic acid and when to take it. I am on 2 mg and I take it 7 days a week. I never heard about not taking it on the same day as the methotrexate?

[Hidden in reply to Linny3]

Methotrexate depletes Folic Acid & Different Consultant’s have differing Protocols, mine was 5mg per day on the Six Days l didn’t take Methotrexate.

[katiemills in reply to Hidden]

I don't understand why people are on such different doses of folic acid !Some are taking 5 mg for five days a week , you took 5 mgs 6 days a week , Linny takes 2 mg seven days a week and I've been prescribed 5 mgs once a week . Have you any idea why ?

[Hidden in reply to katiemills]

I think it’s simply down to the Consultants preference, l’ll see if l can find out more for you tomorrow x

[Hidden in reply to Hidden]

I think this says it all!.......

sps.nhs.uk/articles/what-is...

[katiemills in reply to Hidden]

Thank you so much for that !

[Hidden in reply to katiemills]

I found a complicated Trial that had been done, pages & pages & the upshot was ‘Not Conclusive’ as to the best dosage........

[katiemills in reply to Hidden]

Interesting .....I wonder if some rheumys prescribe more FA the higher dose of Mx you're on ? I'm only on 10 mg ATM

[Hidden in reply to katiemills]

I took 5mg FA day 1-6 MXT day 7 when l started on 10mg MXT & it remained the same when l increased to 20mg MXT

So l think it’s down to Consultants preference probably through experience.

[PMRpro Ambassador in reply to Hidden]

i.e. every patient has different needs! But they seem unable to get that!!!!

[katiemills in reply to PMRpro]

Hi PMR pro , I know you don't take MXT now but can you remember the dosage of folic acid that you're rheumy put you on when you did take it ?

[PMRpro Ambassador in reply to katiemills]

I think he said 5mg the next day but I did double that - took it on 2 days. He and I have a close understanding so he was fine about that. I also upped it a bit further to see if it would help the fatigue which was horrendous but it didn't seem to help. So I stopped.

But I did take all the folic acid he'd given me - not the mtx though

[katiemills in reply to PMRpro]

Hmm, interesting . Thanks for replying .

[Dontwannabesick in reply to Hidden]

Me too

[GerriMc in reply to Linny3]

Linny, as you see, a lot of the replies are the same. 5 mgs of FA six days. 15 mgs MTX on the other day. Maybe if you’re on just 2mgs it’s not so important to skip it on the MTX day. I think 5 is pretty standard though.

[PMRpro Ambassador in reply to GerriMc]

No point taking it on the mtx day - mtx inhibits the pathway. Using it on the other days is to make up.

[xena-]

Hi

I take my first methotrexate on Wednesday 31st

I’m taking 15mg pred

Diagnosed approx two years ago now and have been up and Down to 10mg but only for short periods as my symptoms return and my blood test crp and esr go up so been on 13-15mg most of the time

Have been on azathioprine 75mg bd for last 9months with no effect So changing to methotrexate this wk stopped azathioprine Sunday in readiness

Rheumy pharmacist told me to take after teatime.meal

Folic acid 6 days a week

To miss on methotrexate day

Let you know how things go x

[katiemills in reply to xena-]

I've PM'd you .

[Theziggy in reply to xena-]

Hi xena- I'm starting methotrexate tomorrow too and am also on 15mg pred - only difference is that I only have to take the folic acid 48 hours after the methotrexate - maybe we can keep each other up to date with our progress??

[katiemills in reply to Theziggy]

Hi I've just PM'd you .

[Theziggy in reply to katiemills]

Ok, thanks

[xena- in reply to katiemills]

Ok thanks

[xena- in reply to Theziggy]

Starting methotrexate next Wednesday now

Consultant booking me for lung function test next Tuesday as a baseline. Chest X-ray came back slightly enlarged heart. How you doing

[katiemills in reply to xena-]

Hi , sorry to read that . Hope Tuesday goes ok.... I've only had one dose so far ...... felt more tired that day and the day after and had a headache but not too bad . Fingers crossed !

[Theziggy in reply to xena-]

I have procrastinated and am now hoping to take it on Sunday night - good luck xena- and thanks to katiemills fot her updates

[Hidden in reply to xena-]

Good Luck 🍀

[xena- in reply to Hidden]

Thank you x

[Bfp1]

Hi I was on methotrexate and folic acid the day before and the day after. In hindsight I found the drug gave me very sensitive teeth - to hot and cold and generally they hurt a lot. I had no idea it was the methotrexate until I stopped the drug as it didn’t stop my symptoms. It also made me sweat loads in head and neck. I again didn’t know it was that tik I stopped and then I hear symptom stopped too. Wishing you luck and resilience xx

[katiemills in reply to Bfp1]

I've always had sensitive teeth and they've got worse since I've been on pred. I sweat dreadfully too . Oh dear! Looks like things will get worse ......Are you on a different drug now ?

[Bfp1 in reply to katiemills]

The truth is we never know what causes what. I stopped metho as I had so many flare ups. I am now on pred 40 and cyclophosphamide infusions. I am now in rehab in Finchley memorial having been in hospital over three weeks. Good luck xx

[GerriMc]

Try taking it before bed. It was a game changer for me. Tiredness was the biggest side effect for me so by taking it at night, I sleep through the worst it.

Best of luck with it, I found it very useful. I couldn’t get past 17.5 mgs Pred. MTX helped me to start tapering again. There was also a marked drop in my blood markers after taking it.

Hope it works for you.

[katiemills]

Thanks for replying . I will definitely take it at night from now on - it'll be nice to get a decent night's sleep for a change ! How much folic acid were you prescribed ?

[Missfitt]

Statistically most people get no side effects so be positive. I try not to think about it and go about life as normal and imagine it working, it does.

Best of luck

[katiemills]

I will ! Thanks