Methotrexate issues: For those who have been on... - PMRGCAuk

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Methotrexate issues

Linny3 profile image
32 Replies

For those who have been on this drug; how long were you on the drug before you tried to reduce the prednisone? Also did you get floaters in the eyes from it?

I just started taking it by injection twice a week but was not given any direction when to start reduction of pred. I never had floaters before and these are pretty bothersome, but I can't find any info about them being a side effect.

Thanks for any input

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Linny3 profile image
Linny3
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32 Replies
PMRpro profile image
PMRproAmbassador

Have you looked at MrsNails' story and how she used it? It is in the FAQs.

Personally I think you need a month or two to see how you settle on the MTX first before messing about with the pred. There are doctors who feel it takes a few months for the MTX to start to have an effect.

Linny3 profile image
Linny3 in reply to PMRpro

Thanks for the response. Yes I have read her account

MrsNails profile image
MrsNails

Hi Linny,

When l started on MTX l started reducing by 1mg per month & reduced successfully from 18mg to 7.5mg (from 10mg l went down in 0.5mg drops as per my Consultant) l used one of the Slow Tapers as described in FAQ What dose of Prednisolone are you on?

I’m currently on MTX by injection & have been reducing again by 1mg per month but l’ve overshot it slightly going from 11mg to 10mg so l have returned to 11mg & following a conversation with my Consultant today he said for me to stay at 11mg until l feel ‘fine’ & then go down in 0.5mg drops.

Floaters

Have these come on suddenly? Have you consulted an Ophthalmic Optician regarding this? There are a couple of possibilities it can be - l will attach you some details.

healthunlocked.com/pmrgcauk...

What dose of Injection are you taking as you say you are taking it twice a week?

Regards

MrsN

Linny3 profile image
Linny3 in reply to MrsNails

Thank you for respondingI am on .3ml twice a week. I have tried methotrexate two other time using a .6ml once a week and couldn't handle the side effects. The dr. thought the smaller dose might be easier for me.

I f I had to, I could drop to once a week. So far so good. Have taken 2 shots and I already feel better. My stamina is up and I haven't napped in a week. I was wondering when you started decreasing the pred.? I actually feel different and was thinking about decreasing by a 1/2mg and see how it goes. I am at 15&1/2mg now and have been for almost 5 years.The floaters just started so I figure it must be the methotrexate, though I can't find anything on line about it.

Take Care

MrsNails profile image
MrsNails in reply to Linny3

Hi, no l’m not aware of floaters being a side effect of MTX however anyone can develop a PVD (Posterior Vitreous Detachment) so you need to get it checked out, if you have a read of the link in my other reply it tells you my story.

I’d say a month on MTX before you start reducing, reducing by 0.5mg should make it a lot easier for you, that’s what l’m planning for 11mg once l feel better.

Have they prescribed you Folic Acid as well?

Kind Regards

MrsN

I’m on Nana Duty this week so not around as much as usual but will check in, in case you have any more questions & happy to help

MrsNails profile image
MrsNails

0.3ml is the quantity of the dose and equals 15mg MTX

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Linny3 profile image
Linny3 in reply to MrsNails

I didn't know that thanksI have been prescribed folic acid.

PMRpro profile image
PMRproAmbassador in reply to MrsNails

Interesting - so in fact no wonder her original dose of 0.6ml was higher than is usually recommended for oral doses in rheumatological use, at the top end of the range. And it isn't unusual to start at half the dose for some time to allow the body to get used to it. Plus 30mg i.m. is far more than 30mg orally because of bioavailability considerations.

MrsNails profile image
MrsNails in reply to PMRpro

Yes, that is what l thought! I was always on 20mg then put to 25mg this year orally but they believed l wasn’t absorbing the full dose because of bioavailability considerations as you say, apparently it’s more common at higher doses. I am now on the injectable form & feel so much better ‘in myself’ & there is a very positive ‘side effect’ which l shall report on soon! 💁🏻

Suet3942 profile image
Suet3942 in reply to MrsNails

Sounds interesting Angela!

Linny3 profile image
Linny3 in reply to MrsNails

so I am getting 30 mg weekly?

PMRpro profile image
PMRproAmbassador in reply to Linny3

Yes with 0.6ml

MrsNails profile image
MrsNails

Linny3 - check your box of MTX as different brands maybe slightly different. I’m on ‘Metoject’ 25mg in 0.5ml Solution.

Methotrexate
Linny3 profile image
Linny3 in reply to MrsNails

My bottle says methotrexate injection

50mg/2ml

Isotonic liquid 25mg.ml

MrsNails profile image
MrsNails in reply to Linny3

Do you draw it up yourself with a needle & syringe?

Linny3 profile image
Linny3 in reply to MrsNails

yes I do

Linny3 profile image
Linny3 in reply to Linny3

not sure what this means. How much am I getting per week?

MrsNails profile image
MrsNails in reply to Linny3

I’ll have to work it out, your taking 0.3ml twice a week? And your bottle says 50mg in 2ml? Just about to take Grandaughter back hone do will get my head around it when l get back.

Where do you live? Country?

Linny3 profile image
Linny3 in reply to MrsNails

Thank YouI live in the US

Yes 0.3ml twice a week injectible

MrsNails profile image
MrsNails in reply to Linny3

Hi Linny3 , sorry l didn’t get back to you last evening, took grandaughter home & decided to go out for Supper, the first spontaneous meal out since Lockdown & boy was it good! So Methotrexate 50mg in 2ml - by my calculations shown below 0.3ml = 7.5mg Methotrexate therefore you are taking 15mg per week as you are taking twice a week.

I would like you to confirm with your Pharmacist/Doctor so you are aware of your dose as the important thing is the actual dose you are taking….

Calculations

Methotrexate 50mg —> 2ml

25mg — > 1ml

2.5mg per 0.1ml

2.5mg x 0.3ml = 7.5mg MTX

Please check this with your Pharmacist

Regards

MrsN

Linny3 profile image
Linny3 in reply to MrsNails

Thank You so muchSo happy you could have a nice dinner out! we have been eating out for awhile now and love it.

7.5 mg doesn't seem like a very large dose? What do you think?

MrsNails profile image
MrsNails in reply to Linny3

Hi, well it totals 15mg per week which isn’t too bad, they start most people on 10mg & increase up to 20mg but please check my calculations with your Pharmacist & let me know how you get on. Good Luck 🍀

MrsN

Linny3 profile image
Linny3 in reply to MrsNails

I just checked and yes you are correct I am getting 15mg a week.

PMRpro profile image
PMRproAmbassador in reply to Linny3

Sorry - I read you were getting 0.6 twice a week.

MrsNails profile image
MrsNails in reply to Linny3

Thanks Linny, l just wanted to be double sure, it’s a long time since l drew up drugs 😉 we get ours ready to go in pre-drawn injector pens.

Linny3 profile image
Linny3 in reply to MrsNails

👍😀

Rottsuzi profile image
Rottsuzi

Hi , I as told wait 6 weeks before I reduced down my prednisolone, the nausea is what I have and it’s awful but I’m trying to stay with it to see if it gets better and I want to see how I feel with the methotrexate as the weeks go on .

MrsNails profile image
MrsNails in reply to Rottsuzi

Hi Rottsuzi, please let your Rheumy Team know you are suffering from Nausea, as they can consider you for the injected form of MTX or offering you a simple antiemetic. What dose of Folic Acid are you taking on how many days? As if you are not on the max ie 6days @5mg that can be increased.

Nausea is often the main reason for giving MTX up along with fatigue, l’ve battled both & beaten them over time.

I’m on Metoject now & it’s so much easier than 10tiny tablets! 😉

scottygirl73 profile image
scottygirl73

When i was on this i never got to reduce pred,i was so unwell with it eventually had to stop it,on Actemra now.There will be loads here who can guide you.xx

MrsNails profile image
MrsNails in reply to scottygirl73

Unfortunately in the U.K. Actemra is not Licensed or prescribed off licence for PMR only GCA & that is for one year ( but has been extended due to Covid)

ANGELSARMS04 profile image
ANGELSARMS04

i was on mtx for about 9 months, mouth ulcers were horrid so i asked to get off of it, I have complained to the eye dr about floaters getting worse (i have always had small non disruptive floaters) but now i have large ones that are an issue with my vision. i never thought about the MTX being a culprit. the eye dr blew me off twice in the last year saying its normal with aging, she says its simular to how skin wrinkles... BS... she says exam shows nothing of concern but my vision says otherwise, definitly bringing up with the rheum next week.

Linny3 profile image
Linny3 in reply to ANGELSARMS04

Thanks for the reply

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