Starting methotrexate when feeling rubbish: After a... - NRAS

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Starting methotrexate when feeling rubbish

Jules13 profile image
17 Replies

After a week of moving house and all the stress that entails, I am finally living in my new cottage. I’m camped out in one room with a sofa-bed, microwave and kettle. I have had to hold it together for 5 days while workmen have been in and out, but now the RA has caught up with me and I am absolutely shattered and feel like shite.

The question is... I’m supposed to be starting methotrexate this evening for the first time. I’m still on sulphasalazine and hydroxychloroquine but they haven’t worked. I have so much to do next week and am worried that the methotrexate will make me feel even worse.

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Jules13 profile image
Jules13
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17 Replies
rab333 profile image
rab333

Hi Jules, I have been taking MTX for a few months now and can't say I experience any side effects, they certainly don't make me feel unwell although they can have some nasty side effects long term...

Jules13 profile image
Jules13 in reply torab333

I’m doing a mantra all day that “I will have no side effects” over and over. Not going to obsess. I just need to start it. There’s always going to be a busy time so no point delaying it further. X

Neverwell profile image
Neverwell

Hi Julia I was on methotrexate when they found out I had RA I can’t tolerate it with my stomach so was taken off it 6 months later

A lot of people are ok on it I hope you find it ok x

Jules13 profile image
Jules13 in reply toNeverwell

Thanks.

Cherub198889 profile image
Cherub198889

It was hard for me to take my first dose of MTX. I was really scared of the side effects, so I just closed my eyes and swallowed the pills. Guess what? My side effects was just being tired & sleeping all day. My theory was "The sooner you start MTX the closer you come to clinical remission".

One thing I want to mention to you is not to obsess about folic acid. How much folic acid do I take? When do I take it?. These folic acid questions used to drive me nuts in the begining because it seemed people had different doses & strict guidelines on how many days a week.....Follow the advise of your doctor.... The UK has guidelines on mtx & folic acid, but in North America it's not unusual to take folic acid 7 days a week.

All the best to you.

Sue

Jules13 profile image
Jules13 in reply toCherub198889

I think here they just say don’t take folic acid the same day as methotrexate but rest of the week fine. I’m going for it. X

helixhelix profile image
helixhelix

Basically just do it, and plan to have a lazy day tomorrow in case. I was scared stiff the first time I took it, and now I wonder why as it's been fine. You won't turn into a two headed monster overnight. But equally don't go out partying either......

Jules13 profile image
Jules13 in reply tohelixhelix

Partying on a Sunday!!! Ha. Well 6 pills swallowed. We shall see.

Tomorrow won’t be exactly lazy. Got workmen in the am. Builder in the pm.

Zaheda profile image
Zaheda

Hi Jules

I’ve been on MTX for over 10 yrs now (10mg weekly dosage). For me the benefits of taking MTX outweighed the concerns I had about it’s side effects, as I was in so much pain and was willing to try anything.

I’m lucky that MTX works well for me as the pain is minimal and I had very little of the side effects (occasionally nauseous). However it’s important to remember everyone reacts differently to MTX like any other medication .

Regarding the folic acid it was simple I followed what the consultant said (I take it 2 days after MTX), and to ensure I don’t forget I set a reminder on my phone which helps me and ensure to go for your regular blood tests if u go ahead with MTX.

Good luck if you do go ahead with MTX and fingers crossed it works for you too.

Jules13 profile image
Jules13 in reply toZaheda

My phone pings and beeps constantly reminding me to do things. So as I have taken metho tonight, and didn’t take folic acid today... maybe I should not take tomorrow but on Tuesday instead?

Zaheda profile image
Zaheda in reply toJules13

With regards to the folic acid I suggest u follow the instructions given by your rheumatologist or rheumy nurse. If you were not advised when to take the folic acid and the dosage, contact your consultant/rheumy nurse about this.

nomoreheels profile image
nomoreheels

Pleased you've taken your MTX Jules. Concentrate on it working, sooner you start it the earlier you should see improvement. The dose of folic acid your Rheumy has prescribed will be on the Pharmacy label on the box, not every Rheumy prescribes every day except MTX day. If it's less & you take more than he's decided on for you you'll run out before you can reorder them of course so do check.

Happy new home! x

Cherub198889 profile image
Cherub198889

Well, it's been 12 hours since your first dose of MTX, how are you doing?

Jules13 profile image
Jules13 in reply toCherub198889

Not too bad at all. A bit tired but that might be stress. X

Cherub198889 profile image
Cherub198889 in reply toJules13

I was always tired on my mtx day too. Take your time getting your home together, don't over do it.

All the best to you

Sue

Fra22-57 profile image
Fra22-57

When I was on methotrexate and first started it it just made me feel a little queasy nothing more.

Wishing you love and happiness in your new home.Stress will now subside so enjoy.

Birthdaygirl profile image
Birthdaygirl

You’ve survived the conveyancing process and the actual move with all the stress ....not easy even if healthy so well done you ..... hurrah! After all of that MTX might well turn out to be your new friend. I really hope so.

Wishing you the best of health and happiness in your new home.

BG

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