Side affects: I have taken my first dose of mtx on... - NRAS

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Side affects

HevJ profile image
HevJ
22 Replies

I have taken my first dose of mtx on Tuesday last week and daily hydroxychloroquine (frolic acid on Thursday too). The day after taking I woke a little queasy (I compared it to morning sickness) and this has been every day. However I woke this morning (Sunday) feeling awful. More sick than queasy and now I am so cold and feel As if i have chills. Is this a result of 1 dose of mtx or the daily hcq? Is it a normal side affect?

I have read on here those who the sickness continued and couldn't take mtx because of it. I don't think I expected to feel so bad. I know I my body has to get use to it, but can anyone shed any light on their own experience and how long it lasted? Thanks

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HevJ profile image
HevJ
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22 Replies

Hi Hev,

how often do you take folic acid? I only see a mention of you taking it on Thursday when you mtx is on Tuesday. I was told to take folic acid every day except the day I have mtx. Maybe you should have a word with your rheumy about increasing the folic. I didn't actually get nausea until my dose was raised to 10x2.5 mg tablets. I was then put on the injections and was fine, even though I had 25mls.

HevJ profile image
HevJ

Yes, they just told me to take the folic acid on the Thursday. Certainly from reading on here in the last few mins, most folks are taking it more than once a week. Maybe because it's my first dose? I am on 15mg of mtx and it has been a manageable queasy feeling. However today, I just want to remain in bed, keep still and keep warm! Quite surprised to feel this rough so soon - I naively thought it would take a few does for it to get I to my system before I had the side affect like this!!!

You have to remember that MTX is a chemotherapy drug (obviously in higher doses than we have) and as such, is prone to make us feel queasy at best. Thinking back to when I first started it, I was told to take folic every day. I've since found out that folic on the same day reduces the effect of the MTX. But try asking if you could take it one every day except the day you take MTX, just to see if it helps with the nausea.

Barrister profile image
Barrister

I take 5mg folic acid every day apart from MTX day and I made sure that I started taking it a week before I started taking MTX so had built up a little, and so far haven't felt too queasy. Saying that I'm only on 7.5mg so far and I'm hoping that as I increase, I won't get the nausea. I do, however, get stomach cramps and diarrhoea. Clemmie

helixhelix profile image
helixhelix

I only take folic acid once a week, so it is very individual what you need to counter the effects of MTX. However, it does seem as if you are starting on quite a solid dose. A lot of people start with a week or so at 7.5mg, then 10mg, then 12.5mg and so on. I suggest you call your rheumy dept and tell them how you're feeling and maybe ask about trying a lower dose next week and building up more slowly?

HevJ profile image
HevJ

Thank you.... I will look into the folic acid. I do appreciate its a pretty strong drug, but coping with the nausea is the pits! I was never one for drinking too much as I can't move with a hangover - this feels much the same! All plans for today were cancelled and I am just so glad it's bank holiday Monday tomorrow. I just hope I am ok for work on Tues (and my second mtx dose!).....

Clemmie, how long have you been on mtx? Reading posts I am now wondering how come I went straight in at 15mg! A lot of folks seem to start off lower. I hope the stomach cramps improve for you....

HevJ profile image
HevJ in reply to HevJ

Thanks HH. I will give them a call and discuss....

nomoreheels profile image
nomoreheels in reply to HevJ

I started MTX on 15mg & stayed on that dose for 3 years then upped to 20mg for 3 months which my liver objected to so have been on 15mg ever since (6 years).

Barrister profile image
Barrister in reply to HevJ

I originally started in April but after week 7 I became quite poorly with what my doctor believes is probably Ulcerative Colitis. So I stopped the MTX for 3 weeks until I saw my rheumatologist who also thinks the same. So restarted at 7.5mg (although my rheumatologist said start at 10mg but my stomach is in no fit state for that dose!). Hopefully it will all settle. I hope your nausea settles - I'd rather the cramps any day! Clemmie

Marz21 profile image
Marz21 in reply to Barrister

Hi there, just wondered how you are getting on? I have ulcerative colitis, diagnosed 16 year ago. Sulfasalazine Im on isn't cutting it with the arthritis so been suggested I try 1 of 2 drugs next, 1 being methotrexate. Is it quite bad on your stomach?

Barrister profile image
Barrister in reply to Marz21

Hi Marz21, I've always had a dodgy stomach where medication is concerned, but usually with nausea. Now it seems to be diarrhoea. At the moment it's fairly bad but what I consider bad may well be okay for you. And it may well settle as I get used to it. It's worth giving it a try because I believe it was starting to work on the arthritis even at a low dose. Hopefully it will be good for you and not cause any other side effects. Good luck. Clemmie

Beaches2 profile image
Beaches2 in reply to HevJ

Hi

Just to let you know I also started with 2 weeks on 15mg then straight up to 20mg ......rheumy said we would hit it aggressively and I was happy to go along with that! Now I'm up to 25 mg. I started on it at Christmas and felt horrid for 2-3 days after......sickly and just wiped out. After a few weeks it improved enormously and now feel fine after it. I started with 1 Folic tab per week and now have 3

Hang in there and hopefully your body will soon get used to it too x

nomoreheels profile image
nomoreheels

It could be that you need more folic acid as poems suggests. I inject MTX & take 5mg daily except day of injection & it certainly helps me. Although I must say I've heard of few people who have no side effects on it it is worth persevering as it does help so many people, I count myself as one. Rheumys do differ in the use of FA as there are some who feel it interferes how efficient the MTX is if taken at a higher dose. I was on 1 the day before & 1 the day after taking MTX under one consultant but my new one suggests the 6 a week I take now, but if yours prefers just the one maybe your GP can offer you an anti-emetic to help.

MTX is often blamed for the symptoms you're experiencing but hydroxychloroquine can also give some similar symptoms. I was also given HDX when first diagnosed & wasn't too good on that & I felt as you do now (I wasn't on MTX at that time) & had dizziness & nausea & a constant headache so it was withdrawn & I was put on another DMARD. So don't worry if it's the HDX there are other options. I was concerned from the start as my consultant explained it was a quinine based drug & I always had headaches when drinking tonic water so in my mind my concerns were well founded.

I hope this helps. Snuggle up & maybe a good sleep will make you feel at least a little better tomorrow.

HevJ profile image
HevJ

Nomoreheels, I did wonder if it was the HDX, as it came on so suddenly this morning. Reading it seems MTX affect most people in the first 48hrs and then the rest of the week is not so bad??? I am still unsure why I am on both meds. When I was diagnosed in Dec the specialist reg said it would be one or the other, however after my flare and seeing the consultant he said it would be both....

Also can anyone tell me, why does MTX have to be taken in 1 dose? Why can't it be spread out and taken daily? (excuse my ignorance folks, it is still all new to me).

As you suggested NMH, my girls have gone to stay with their grandma for half term (my partner has just left with them) and me and the dog are snuggled up!!!

Heather

nomoreheels profile image
nomoreheels in reply to HevJ

Two DMARDS are commonly used in the UK (I was diagnosed in Spain & at the time this wasn't their preferred choice, I had a DMARD (HCQ), a corticosteroid & an anti-inflammatory COX-2 inhibitor. I would think given your flair at the time & therefore activity your Rheumy decided it was the best course of action for you.

You're right that it's usually a couple of days if you're going to have side effects on MTX. I feel washed out & don't usually want much to eat but you get used to the signs & just take a rest if you need to a it's no use fighting it.

Tablet form is usually taken (depending of the dose) with meals ie, I took 15mg as 2 x 2.5mg tablets with breakfast, lunch & dinner as it's easier on the stomach. I don't see any reason for you not doing this if you prefer, it's more commonly taken this way. FYI Specialist Registrars are exactly that, a Registrar who wishes to specialise & not yet qualified as Consultants. I appreciate they have to learn but from my experience they are still learning & don't have the final say. Sorry about that but I'm off them at the moment!

There's nothing better than a doggies snuggle. When I pop off to bed in an afternoon sometimes there's a battle who comes with me with two of them but one particular one always wins & she's a good snuggler!!

sallyc profile image
sallyc

I have been on MTX for 2 months now, MTX also makes me feel dizzy and nauseas I was taking folic acid 2 days after but because of the sickness was advised to take folic acid the day before MTX as well which has made things slightly better. Hope you feel better soon,

jeanjack profile image
jeanjack

I have been on 20mgs MTX for just over a year now. Whilst I started out okay with just a little nausea after about 10 months it got really bad. Rheumy suggested splitting the dose in two throughout MTX day. This was a little better but still not great so I decided to reduce to 15 mgs and split this into 3 at breakfast, lunch and tea. This worked very well with hardly any feelings of nausea but I found my fingers were feeling a little swollen and stiff in the morning and my ESR levels had gone up so obviously 15mgs was not enough. At the same time I questioned the folic acid I was taking with my doctor. I was only taking 1 folic acid a week and mentioned that other people were taking it every day except MTX day. He confirmed that I could also take it 6 days a week if I wanted to. I have now increased MTX to 17.5mgs split into 3 doses at breakfast, lunch and tea as well as taking folic acid the day before and 2 days after. I am delighted to say this seems to have worked brilliantly and have had no nausea at all. It's still a bit early days as I have only done this regime for two weeks but so far so good.

To sum it all up I think what has made the difference is splitting the dose into 3 throughout the day and increasing folic acid.

I do think that as we have to live with disease for the rest of our life it is sometimes up to us to manage our medication regime ourselves and not wait for the next Rheumy appointment to tell us what to do. I have to say that it was on this site that I first read about splitting MTX into 3 doses which gave me the confidence to try it out myself.

Jean

cathie profile image
cathie

I was told to take mtx on a Friday to give me weekend to recover from tiredness and side effects. Then folic acid of a Monday.

HevJ profile image
HevJ

Thanks folks…feeling so much better this morning.. Just a little queasy but I can do things!!!

I am going to spilt my dose tomorrow and also ask about the folic acid…

nomoreheels profile image
nomoreheels in reply to HevJ

That's good news. See, the love of a doggies cuddles can do wonders!! :)

norfolkjo profile image
norfolkjo

My rheumy says folic once but mines now four days to counter the sickness and it worked. . Xxx

samie1999 profile image
samie1999

Hiya HevJ, I will be taking my mtx for the third time on Thursday 10 mg and i take folic acid everyday except the Thursday and Friday it is one nasty drug, horrible nausea and tiredness etc but I suppose it does its job?! I think the folic does help though, but think its all about perserverance unfortunately , thankfully you are feeling a bit better now hope i didn't discourage you with my slight negativity getting so fed up with this drugs side effects already, but this site is a mine of info and friendly people to keep you going on bad days! Sure everything will settle soon, samie x

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