Newbie here...: Hi, I'm just posting to introduce... - NRAS

NRAS

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Newbie here...

JFlay profile image
15 Replies

Hi,

I'm just posting to introduce myself as I'm a newbie 🙄 I am 58 and recently diagnosed seropositive RA but my symptoms started in my early 40's (thought it was the menopause). I've been on MTX for 5 weeks now, was ok until the dose increased to 15mg and the folic acid decreased to one tablet a week, have felt really nauseous for the last two days 😥 I have an appointment with the rheumy nurse next week so will have a moan about it then 😒

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JFlay
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15 Replies
Simba1992 profile image
Simba1992

Hello Narnia,

This reliable info from an experienced rheumy may be of help to you, also when talking to your rheumy. All the best Simba

rheumnow.com/content/dsb-ma...

JFlay profile image
JFlay in reply to Simba1992

Thank you!

helixhelix profile image
helixhelix

It can take a few week to adjust to dose changes, so you may be fine in a bit. Did they say why you should decrease your folic acid? Some people find it helps with nausea. Simple thimgs like ginger tea can also help.

JFlay profile image
JFlay in reply to helixhelix

Thanks for your reply. Initially the prescribing was done between the hospital and my GP by phone, the letter came later. It says in the letter from Rheumatology to my GP (they sent me a copy) 5mg folic acid weekly but I will query this at hospital next week. Will give the ginger tea a try thanks.

nomoreheels profile image
nomoreheels

Hiya Narnia-J, welcome. It can take a little while for your body to get used to MTX so although you're feeling nauseous that may pass. I wonder why your folic acid dose was decreased? MTX can cause a drop in folate, it can't determine which to target, good cells or bad, so we supplement with folic acid. It would make more sense for your Rheumy to increase it as your MTX dose is increased, it would most likely help with the nausea. Ginger can help too, I found stem ginger particularly good, but then I'd be happy eating it nevertheless! Have a word with your nurse when you see her next week, see if she thinks it's a good idea to increase your folic acid & can authorise increasing the days you take it. I've been on MTX 10 years, I inject & currently on 20mg & take 5mg folic acid 6 days, just not MTX day. Experience of taking MTX tells us that it can make a difference, as can dividing your dose throughout the day, I took 15mg MTX tablets with my meals, as recommended by my Consultant, 2 tablets with my breakfast, lunch & evening meal. I had no side effects of note, a little hair thinning early on but that settled with a folic acid increase. Some take their tablets in one go at night, the idea being you sleep through any side effects but I was advised against that.

There's nothing better than personal experience so if there are any other questions or tips we can share with you just ask, many of us here have been on MTX at some time so have lots of practical help between us.

I hope you find it helpful being here. 😊

JFlay profile image
JFlay

Thank you. Yes I'm going to check it next week but that's what it says in the hospital letter 🙄 hopefully the nurse will increase the folic acid.

rab1874 profile image
rab1874

You maybe feel better on injections instead off tablets as they are less nauseous plus are you drinking plenty off water, lastly welcome to the forum xxx

Dobcross1 profile image
Dobcross1

Hi and welcome. I think someone else suggested trying the injections rather than tablets. I changed and nausea went (but I'm due to increase to 15ml next week so I might regret saying that😂). Like others I take 5mg folic acid 6 days per week. Good luck I'm sure it will be sorted when you see the nurse next week x

JFlay profile image
JFlay

Thanks everyone. Hoping all will be well if I can get the folic acid sorted.

Pinkypie2018 profile image
Pinkypie2018

I've recently started methotrexate also and my next dose is up to 15mg, but like you I was only told to take folic acid weekly and to take it 48 hours after methotrexate. So far I've been fine but I'm expecting the higher dose to cause some side effects. Also a lot of people take it at night but my rheumy insisted taking it in the morning, so that's what I have been doing. It's strange how we're all given different information on these things. However if I do suffer from nausea etc I will be questioning my rheumy at my next appointment as there's no point in us feeling bad unnecessary whenever the folic acid could possibly help us.

JFlay profile image
JFlay in reply to Pinkypie2018

Yes we're all different and also the so called experts! It's very confusing when still trying to get your head around it all 😒

Nanna71 profile image
Nanna71

Weird that the folic acid was decreased. I take MTX 15 mgs - about 12 weeks now and it has just started to kick in well. I have no nausea, had a few mouth sores - salt water quickly fixed that, otherwise nothing much. I take the MTX with a FULL meal on Sunday at noon as recommended by the pharmacy. Did you misread the folic acid dose? I take 5 mgs daily, Monday to Friday as do many people on this forum.

Some have said that the side effects of MTX fade out with time. 🙂 I also take sulfasalazine as the MTX wasn't doing the whole job so one month into that. No side effects at all that I noticed. Hope this information is helpful.😃

JFlay profile image
JFlay

Hi, no I think the GP surgery got the prescription wrong the first month and have then put it to what it says in the Rheumatology letter 5mg weekly. I have a hospital appointment next week so will get it sorted. I was feeling ok up till that happened 😥

Why was your folic acid decreased to one a week? You can take folic acid every day except methotrexate day and since methotrexate is a folic acid antagonist, increasing folic acid can help. You can also ask if you could be prescribed anti nausea tablets. The best I had were Ondansetron, a 5HT antagonistic, but they were *very* expensive. In 2008 30 tablets were £94.19 and that’s the 4mg strength. It cost £62 something for 10 x 8mg strength. There are the motion sickness antihistamines

like cyclizine and cinnarizine and the third type of anti emetic, such as metoclopromide and domperidone are very good anti emetics, but no use for motion sickness.

A good few years ago now, metoclopromide was found to induce symptoms of Parkinson’s (not Parkinsons itself) and was therefore not recemmended for long term use. I was taken off the drug as my dad had developed Parkinson’s before he died.

JFlay profile image
JFlay

Thanks. I think because there was confusion between the hospital and GP surgery about the prescription. I'm seeing the rheumy nurse specialist next week so will get something sorted.

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