Nervous about having methotrexate infusion: Hi all Been... - NRAS

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Nervous about having methotrexate infusion

Fantasy3 profile image
28 Replies

Hi all

Been to see my rheumatologist today.

Was told to stop sulfasalazine as I am constantly nauseous.

I’m now being given methotrexate infusion.

Very nervous about it all.

Any advice from anybody would be grateful

Thank you

Dawn

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Fantasy3 profile image
Fantasy3
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28 Replies
Mmrr profile image
Mmrr

Do you know why your rheumatologist has suggested an infusion of MTX rather than tablets or subcutaneous injection ?

MTX infusions are not normally used for RA.

I think you need some clarity on his/her thinking.

Fantasy3 profile image
Fantasy3 in reply to Mmrr

Hi

I’ve been on sulfasalazine for over a year,but am feeling nauseous on it again.

So was told to stop taking it,and will get infusion annually of methotrexate.

X

Bootoo profile image
Bootoo in reply to Fantasy3

Very odd, methotrexate is taken weekly not annually, Mmrr is correct in saying you need clarity

Fantasy3 profile image
Fantasy3 in reply to Bootoo

Thank you

AgedCrone profile image
AgedCrone in reply to Fantasy3

Are you sure it wasn’t a Mabthera infusion?

Mtx was used in the USA as an annual infusion for PSA years agio, but was discontinued

As far as I understand Mtx is not used as in infusion for RA in the UK.

Do check with you rheumy nurse.....maybe there has been research & this has been introduced?

Fantasy3 profile image
Fantasy3

That’s very strange as I have been looking on internet and many people have it as an infusion

Bootoo profile image
Bootoo in reply to Fantasy3

annually or weekly ?

AgedCrone profile image
AgedCrone in reply to Fantasy3

Are you sure that was not for cancer treatment where it is used at a far higher strength than used in RA?

Fantasy3 profile image
Fantasy3

Annually

Strange, I thought infusions of mtx were used in chemotherapy. I’ve never heard it being used like that or been offered it for RA. I looked it up and couldn’t find info like that Fantasy3, where did you read it? Interesting, maybe it’s a new thing 😊

Fantasy3 profile image
Fantasy3 in reply to

Yes it is a cancer drug,I read up on it online.

Just googled methotrexate infusion for ra.

And gives you all the info.

X

Bootoo profile image
Bootoo in reply to Fantasy3

googled it still can't find anything... can you give us a web address?

in reply to Fantasy3

It would have to be a huge dose of it's to last for 1 year. I don't think even as chemo you would be given that much, as chemo is usually given every 2-3 weeks.

Mmrr profile image
Mmrr in reply to Fantasy3

There have been trials of using MTX by infusion to treat RA, but many of the patients became unwell and required hispitalisation, due to the high doses of MTX required. The practice was discontinued.

Fantasy3 profile image
Fantasy3 in reply to

I’m beginning to think I heard him wrong.😢

But he gave me a leaflet titled”methotrexate drug info”

And said I shall be getting it via infusion

🥴

Maybe wait until they contact me then ask all relevant questions

Thank you

X

helixhelix profile image
helixhelix in reply to Fantasy3

Good idea! Perhaps you heard “infusion” in place of “injection”?

But anyway the important point is that it can be a great drug. There are lots of negative stories on the net, but that because people who do well with it don’t post. It’s been great for me over last 9+ years and i wouldn’t be without it. Especially the injections as they’re very easy and i have no side effects.

Bootoo profile image
Bootoo

please let us know how you get on

mccaffs2014 profile image
mccaffs2014

I thought it might be a new treatment and googled it as well.I could only find references for use as chemotherapy drug. It would be interesting if you are receiving something new. Let us know what you find out.

Fantasy3 profile image
Fantasy3

Thanks everyone.

I’m feeling rather stupid right now.

But will update you on what I’m given

X

in reply to Fantasy3

No need to feel stupid, you’re not, but do let us know how you get on with it. I’ve been on methotrexate for 20+ years and it worked very well for the majority of that time, I hope it does for you too 😊

Mmrr profile image
Mmrr in reply to Fantasy3

Your not stupid, the amount of information given out at clinic appointments can be overwhelming. Do let us know how you get on ?

Sweetpolly2016 profile image
Sweetpolly2016 in reply to Fantasy3

Maybe the doctor meant injection? Seems excessive as an annual infusion. I take the pills once per week and have been on them for about 4 years. My labs have really improved since being on the pills. I tried stopping taking the pills a few years ago and it made my condition extremely worse. So now, I take them religiously each week. God bless. I hope you will get the best to help your situation.

Fantasy3 profile image
Fantasy3

Oh wow 20+ years

That’s a long time.

I was only diagnosed in 2017..

I hope it works as well for me whichever way it’s administered.

X

mccaffs2014 profile image
mccaffs2014

Don't feel stupid. I knew nothing until I found this site and I'm still learning things. When you do get it I hope that it works well for you as It helps so many others. Good luck😂

SaneJane profile image
SaneJane

As a general rule, it's best to clarify and also ask what the alternatives are. You may have a number of options. Ask for clairification and options. Hopefully, he'll talk with you by phone or fit you in to do this. Then, you can research more thoroughly and make some choices.

Julies49 profile image
Julies49

I’ve been on it for 17years injection with not many problems hope it’s the same for you

Thought you might find this interesting. creakyjoints.org/treatment/...

Harimah profile image
Harimah

I did'nt know they gave Methatrexate as an infuson and speaking for myself would'nt go along with this, If there are any side effects then nothing can be done, with tablets you can stop taking them but how do you remove an infusion, I'd point this out to your Rheumatologist and ask for their reasons

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