Mxt: Hope everyones ok. Random post i know but does... - NRAS

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Mxt

emma88 profile image
34 Replies

Hope everyones ok. Random post i know but does anyone else really hate and struggle with the drug methotrexate? I absolutely hate it. I always feel so sick after it and feel sick just taking it that sounds crazy i know but i think because i know how sick it makes me its now made me struggle just to take it sometimes i can be sick soon after attempting to take them theres even times when i just cant take them because of them making me so sick and me struggling with them. I think it may be slightly easier if they just did them in one maybe two tablets rather than 8 like just put the dosage in one rather than such a small mg in the one tablet meaning you have to take 8 in one go. I probably come across as so silly i know i just wish they would allow me on another drug it hasnt been helping anyways lately with my joints so i feel like im having to make myself sick and filled with dread for nothing. Is it just me thats like this with mxt?

34 Replies
Lyndy profile image
Lyndy

I felt exactly the same and also tried the injections which had the same effect. It was a pity because it was actually effective but I had to give up the struggle. xx

emma88 profile image
emma88 in reply to Lyndy

I got put on the injection few years back as i was really bad and tablets wasnt doing anything but i struggled with them so asked to try the tablets again but i still struggle. Like i say even just taking them i struggle with and most weeks cant stomach or end up being sick. Its not a nice feeling and it makes me sound so mad haha

helixhelix profile image
helixhelix

Have you asked your doctor for help with this? As some counselling could help you work out ways to feel less dread about them, which may then help you feel less sick. I had problems with it to start with, which made the weekly moment hard, but most side effects wore off and I worked out a routine that I find supportive. I can imagine that if it had continued like that I would be pretty desperate.

emma88 profile image
emma88 in reply to helixhelix

I mention everytime that i am not a fan of them and how sick they make me, im on folic acid and he put me on another sickness drug which i told him sometimes helps when its really bad the day after i take them but nothing else ive not long started baricitinib so he said he cant think about taking me off them for a while he said he may consider lowering the dosage to help. Its such a crazy thing to have i know it sounds mad as they are only tablets i shouldnt feel so bad when taking them

Wildething profile image
Wildething

Don't know if this is correct but I'm sure I was told if I was so sick with methatrexate tablets I could go onto methotrexate injections I steadily

emma88 profile image
emma88 in reply to Wildething

I was put onto the injections Unfortuentley they made me the same and very sick the day after still

Ferret18 profile image
Ferret18 in reply to emma88

Exactly the same with me 😞

Wildething profile image
Wildething

I thought I'd been offered injections I must be lucky as the tablets don't affect me

happytulip profile image
happytulip

How many days a week do you take folic acid? Increasing the amount of days that I took folic acid completey resolved my nausea. I was put on folic acid 6 times a week.

I managed to eat a whole cooked chicken that I found in the fridge, I was suddenly so hungry.....my Mum wasn't happy as it was for a lunch the next day!

Ferret18 profile image
Ferret18 in reply to happytulip

🤣

Increasing the folic acid didn’t work for me. They wanted to give me an anti sickness drug but I refused as I’m on so many other drugs as it is

emma88 profile image
emma88 in reply to happytulip

Im in folic acid six days to help it but it does nothing theyve also put me on another anti sickness tablet which is ok but doesnt work as well as i would have hoped

GranAmie profile image
GranAmie in reply to emma88

Sorry to hear MTX affects you ... i wasn't happy either but then a cough appeared and I was left with lung damage .. and a wheelchair, tho' now recovered and doing well on bio Truxima; take care.. and keep complaining. xx

James53 profile image
James53

Sorry to hear about your battle with methotrexate.

I had to give it up due to developing serious breathing issues caused by it.

There are alternatives so speak to Rheumy team.

I am now on biological meds and much improved.

My advice - speak to rheumatologist and ask for an alternative treatment.

Izyb773 profile image
Izyb773

I feel you!!! I feel like I’ve been run over by a bus the next day, not to mention liver problems. My next step is a biologic and currently taking steroids short term to tame a flare up In my PsA which is helping immensely. Hot water bottles, berrocas and smoothies are my ritual the morning after taking mtx

JulieMBrown profile image
JulieMBrown

I have had similar issues and this what developed into a real aversion to taking MTX. I started on tablets but they caused significant nausea so I was moved on to the pen injection. Within a couple of months I began to feel sick prior to injecting - the yellow colour of the liquid even made me feel queasy and I started missing doses - not good and I suffered accordingly. After a visit to my Rheumatologist I was told that Methotrexate aversion is a thing and I think it’s known as MTX intolerance. You can feel sick or actually be sick just thinking about the treatment. I was put back on tablets and my Folic Acid dose was upped to 6 days a week from 3 to curb the nausea and I was given an anti-sickness medication. I was also told I could split my MTX dose and take half the tablets in the morning and half twelve hours later ON THE SAME DAY - I’m stressing this as they must be taken on the same day. It worked for me and I’ve stayed on MTX since - which is great because I struggle to use my hands without it. I would definitely seek additional medical help and opinion to support you to keep going with your treatment.

emma88 profile image
emma88 in reply to JulieMBrown

I was the same with the injections the colour of it made me feel sick as well as the injection as a whole. Im on my new tablet now but he has said he cant think about taking me off them for atleast 6 months maybe more im on the tablet version and i have the same as you did with the injections there are times i end up missing it because i just struggle so much i feel like i sound crazy saying it because it sounds so daft haha

Ruth12345 profile image
Ruth12345

I feel for you. I take mine very last thing at night which often helps me sleep through the worst. Not always and then its the 'hangover sickness' feeling. I can now manage this most weeks by doing that. Its hard I know. It took a long time for things to become just manageable. I persevered as Im sure mtx helps me. I do agree about amount of tablets to take in one go. However talk to your rheumy. They should have some ideas that can help.

Ferret18 profile image
Ferret18

I know exactly how you feel. I was on the mejoect version of MTX and after 4 weeks of discussions with my rheumy have agreed I will try something else. It just ruined 3-4 days of my life; feeling sick and fatigued after every dose and latterly, like you, sick at the thought of taking it.

Speak to your rheumy - there are other drugs out there to try. You shouldn’t have to suffer like this

emma88 profile image
emma88 in reply to Ferret18

Thats how i am with it on the day i take them i feel sick because i know how bad im going to be so just taking them i struggle with and most the time i cant take the full dosage which sounds so daft i know and then the day after is another struggle of feeling really sick and trying to stop the sickness especially if im at work

Ferret18 profile image
Ferret18 in reply to emma88

I was told to get sickness bands and take a couple of digestive biscuits after doing the injection. They helped a bit but I still felt awful and quality of life just rubbish

You shouldn’t have to feel like this

Don’t take no for an answer

Take care

Brushwork profile image
Brushwork

I struggled with tablets, the injections are so much better. The idea of self injecting is scary to start with, and I’m/was terrified of needles, but it’s really ok once you’ve done the first one.

barbieg profile image
barbieg

When I was put on Methotrexate after eventually failing on Sulfasalazine. I was really worried about the side effects but was advised to split the dose. I’m only on 15mg , so take 3 after breakfast and 3 in the evening. It’s worked for me as I’ve never suffered the nausea, luckily but do suffer dreadful wind! Not very ladylike and a good job I live on my own! I was advised to up my dose of folic acid but went back to 1 a week as I felt the folic acid made it worse. Perhaps you could try this , if it doesn’t help I would speak to your consultant. It’s not worth suffering like you are.

Sheila_G profile image
Sheila_G

Sorry you struggle with mxt. I know it doesn't do for everyone. I have taken mxt for 18 years and haven't had a problem with it. It is definitely a case of one size doesn't fit all. As for the amount of table we take, my Pharmacist explained it to me. Mxt is a very strong drug and they used to do a 10mg tablet but had had people overdosing by taking the wrong mix e.g. could have taken too many 10mg tablets instead of a combination of 10mg and 2.5mg. They decided to make them all 2.5mg for safety reasons.

Pam-51 profile image
Pam-51

I have been on methotrexate for 35 years and for years it caused me severe nausea, but I persevered as it was the only effective treatment available at that time. Injecting the drug improved the side effect of nausea along with folic acid weekly. Yes, these days there are alternative therapies, but methotrexate is still the drug of choice as it is effective in controlling R.A., can be tolerated by most people and is cheap.

Have also been on Rituximab for 12 years and have developed Rituximab induced Hypogammaglobulinaemia, which has caused damage to my immune system and requires weekly immunoglobulin infusions. All drugs can cause side effects and these need to be considered in relation to any benefit gained.

Best wishes and I hope you find the right combination of drugs for you.

Blackpooltower profile image
Blackpooltower

I had the same problems Finally switched to injections and very few problems, besides being a pin cushion! Hope you feel better soon

Maeve31 profile image
Maeve31

I had the same problem and then I'd also spend the whole day (or night if I took it at night) burping and almost throwing up.

Then someone suggested taking it with porridge in the morning and that has completely sorted it for me. I take my 10 tablets (🙄) in the middle of having my porridge.

Now it no longer makes me feel sick and I've got to the point that I can just take it as if it were any other pill.

Hello Emma,

You are not silly. Most people have fears around taking such strong drugs. I'm fortunate that MTX works well for me and I don't get any nasty effects from it, even though I was very worried about taking it at the start.

I was given a mixture of 10mg and 2.5mg tablets right at the start. A bit later they stopped making the 10mg ones because it was too easy for people to confuse them with the 2.5mg and accidentally take a much bigger dose than they should, which is very dangerous.

It sounds as if it's time to contact your consultant and get some help with this.

Best wishes.

Scottishlad profile image
Scottishlad

These posts make me realise how lucky I've been. I only had problems when I was up at 25mg. I started to get mouth ulcers at the higher level. These days I am only on 10mg as it goes along with my Cimzia biologic and hydroxychloroquine.

Nuttyshirlz profile image
Nuttyshirlz

I used to be sick all time when first started once over that hill I was fine being on 4yrs now and still get good and bad times. But always feel hungry 24hrs after I’ve taken them.

jojo_71 profile image
jojo_71

Hello emma

Sorry you are struggling so much with it, it's such a shame as it really does work well.. It was the first drug that helped me after approx 7 Yrs, in 93!.

I'm still on it now, but also alongside either an anti tnf or biologic.

I had issues with stomach cramps, but took probiotic. And that stopped that. I also have an issue if I over indulge with wine. 😉 But ginger root helps with that!

I do know that many, many people just can't tolerate it.. I've met so many over the years, so you are absolutely not alone.

One thing you may not have thought of trying.. Is hypnotherapy. As it may help your anxiety over taking it.. And possibly even help calm the nausea. I think you seem to react so bad, it would take something quite radical to help. Ive had Hypno, and so has a couple of my friends, and wow what a difference it made.

Otherwise you definitely need to just change meds. You can't go uncontrolled, that leads to damage, and then surgery.

Take care

Jo xx

Reving profile image
Reving

Hi emma88 I found MXT difficult and always felt nauseous even with folic acid and strong anti sickness tablets. I have been changed to Lefulunomide and find them so much better. Not only do I not feel sick but they are having a better effect and improving my condition which is great. Hope you get sorted with something better.

emma88 profile image
emma88 in reply to Reving

I would love for them to try me on something else but because ive not long started baricitinib he wont consider me coming off them anytime soon its more just a pain because im suffering with the sickness but they dont really do what they should thats why i had to start baricitinib as i was really bad a few months back. So its a case of suffering every week for a drug that hasnt been solid for me ive come out of remission a few times now

Reving profile image
Reving

So sorry you are struggling so much emma88.

Amnesiac3637 profile image
Amnesiac3637

I felt exactly the same as you when I was on it some years ago. For four days out of seven I had brain fog, nausea, limbs like lead and sleepiness. For three days I felt better as it started to wear off and then back I went on the same merry-go-round. The tablets were the worst - I dreaded taking them as I knew how I would start to feel and even though I switched to injecting, I felt sick at the thought of how I would feel. So my solution was to refuse to take it at all. My consultant kept trying (every time he put me on something different) but after three years of misery I felt that life is just too short - and my consultant wasn’t the one who had to take this horrible drug!

You do not need to put up with having something that makes you feel as you do. RA is bad enough but having a drug which makes you feel worse is not worth it. There are loads of alternatives now and even though many RA consultants stick to the ‘gold standard’ story of MTX being best with other drugs it’s not gold if it’s only brass! Ask for the alternatives, refuse methotrexate if you want to - it’s your body and mind- and don’t feel guilty about doing it. Good luck!

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