Side effects: Hi just started methotrexate ..just... - NRAS

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Side effects

lisamcdermott profile image
28 Replies

Hi just started methotrexate ..just wondering how people find it and what side effects commonly come with it ..thanks

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lisamcdermott profile image
lisamcdermott
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28 Replies
lainee profile image
lainee

Hi I have been on it over a year and have been lucky as had very few problems. Feel more tired and a bit off but nothing drastic. I drink plenty of water after reading that helps on here and ginger tea. Good luck with it. X

I was only on this for a few weeks got swollen glands and cough felt half dead told to come straight off after bloods were done its very good for a lot of people

helixhelix profile image
helixhelix

I've been on it 6 years now, and it's wonderful! Joints rarely give me any problems now.

The first few months were a bit tough, but that wore off. Now all the side effects I have is feeling a bit tired the following morning.

nomoreheels profile image
nomoreheels

You'll receive varying reports, mine is a positive one! I've been on it since 2009 at varying doses, 17.5mg at the mo & I do really well. I take 5mg folic acid every day except injection day & have a little less appetite & a bit more tired the day after but by Friday I've bounced back. I had a little hair loss early on & less so when I have an increase in dose but only my hairdresser & I notice it's so little & the new hair's grown back wavy, bonus! Do remember though everyone is different & nobody can predict which or even if you'll have side effects. If you do it may be that increasing your folic acid will help.

I hope you find it equally good Lisa oh & welcome! :)

medway-lady profile image
medway-lady

As with all medications it varies from person to person , I felt good but had horrific hair loss. No feeling sick etc just a sudden wave of incredible heat (like being on fire in the stomach that spread out) and hair loss. I saved it and took it with me to hospital appt and consultant took one look and stopped the MTX. I waited then 6 weeks and started on Leuflodamide. A few minor side effects but 4 months on if I did not know I have RA I would not believe I do. Its great stuff,so my message is MTX is very good, but for me Leuflodamide is better. RA medications are a journey so just don't be frightened of horror stories as if 1 in 10 get something then its far more likely that you'll be among the 9 of the 10 than don't.

Jacki08 profile image
Jacki08

Hi Lisa-- I was troubled with nausea, :ginger and anti emetics helped. Unfortunately I had to stop having it but it gave me my life back-- I could do all sorts that I had been unable to do for years. Drink plenty of water and give it time to work. Good luck☺x

Ali_H profile image
Ali_H

Hi Lisa,

It works well for me with no side effects but initially I did get some nausea and headaches - taking it with porridge and fresh ginger helped and also drinking plenty of water stopped the headaches.

All the best

Ali

RichardG profile image
RichardG

Just nausea and feeling tired the day after when I was taking 8 tabs. Did have problems on higher doses with mouth ulcers and sore tongue. Now taking 4 tabs with Humiria and no side affects from the MTX apart from bit of churny tummy for a day. Everyone is different and I would experiment with taking it different times of the day. Some say evening is best and then you sleep though most of the side affects. With me I found taking it after breakfast worked best. Either way anything is better that the RA and pain and inability to do much that I had before.

Nashraf profile image
Nashraf

I am very fortunate as it proved to be the miracle drug for me. After 3 years of 17.5 mg, it has been reduced to 15mg. I have no obvious side effects but then I was so ill that I no longer notice minor side effects. I am in remission and hope I can be weaned off but if the blood results show different then I will continue MTX as it has changed my life.

popsmith1874 profile image
popsmith1874

Hi I've been on it for a year and it was good initially but had a few chest infections and just getting over ulcers in throat and problems with my tongue so I'm off it and waiting for Rheumy to go to next stage

Sheila_G profile image
Sheila_G

Hi Lisa. I had hair thinning at the start but that didn't last long. I have been on varying doses up to 20mg now on 17.5. and take folic acid twice a week. I have been taking mxt for 14 years now and it has been amazing for me. I have had no sickness or nausea with it and am now in remission. My tip would be to take it before you go to bed then if there is slight nausea you will sleep through it. All the best x

calflo profile image
calflo

Hi I've been on it 6 years now and never looked back. I have had very few flares since I've been on it. I do feel tired and nauseas the next day but it's a small price to pay for being almost pain free. I just rest as much as I can on the next day and eat little and often. Good luck (injection is much better than tablets)

anneileen profile image
anneileen

I have been on MTX for 18 months to fight a rare form of leukaemia, I also have RA but that is not the reason for taking it. You have to remember this is a chemotherapy drug, (not everyone knows this), and as such is a poison to the body. Weigh up your quality of life without the drug and the benefits of taking the drug. This is not "good" for you, it is the lesser of two evils, either destroying joints with the RA or damaging your body with the drug. Taking MTX cannot ever be an easy decision. I was put on MTX over 20 years ago but decided after a few months to come off it, it frightened me. Recently with the onset of LGL Leukaemia I have no option but to take it again but it still frightens me. I wish you well in your fight against RA.

in reply to anneileen

I agree. I have inflammatory arthritis and have been under considerable pressure to take it. I have already had allergic reactions to two drugs and feel my body is hyper sensitive at the moment. I am managing my arthritis and have no desire to poison my body just so I can do what I did before.

bevlin profile image
bevlin

I've been taking it for fifteen years and have no side effects other than feeling a hit sick after taking it. I now drink lots of water straight after and take it in the evening followed by Folic acid the next morning and have no problems. My eighty year old mum has been on it for about thirty five years and still has a full head of thick hair, is a bit knobbly in places ( aren't we all?!) but has managed to stay active.....if you can cope with it then go for it, it is a miracle drug!

Cagsie profile image
Cagsie

Sadly I was one of the ones that felt awful on it. It helped my joints so I stuck with it for over two years. Tried tablet form and injections. I had nausea, abdominal pain, frequent very urgent visits to the toilet. I felt awful on it didn't realise till I stopped it. That all sounds dreadful but you have read so many good messages. We are all different, we react differently. I'm wishing you the best of luck and painless joints for the future xx

flow4 profile image
flow4 in reply to Cagsie

I hope you have found something that has worked for you, Cagsie.

Cagsie profile image
Cagsie in reply to flow4

Thank you, I started on Leflunomide and although it took time to work I started too feel normal again. As I often say I felt like me again. I truly hope you find something to suit you x

I feel nauseous for four days and can't eat my rheum nurse said to take my folic acid every day expect day of methotrexate, I also take prednisolone, and tramacet daily if that don't work she said might try me on injection, I am hoping this works as other meds upset liver function. Good luck with your meds.

dgray78377 profile image
dgray78377

Thinning of your hair will be most noticeable. Good luck.

beeckey profile image
beeckey

I have been on it for at least 8 years no side effects at all not sure what is does for me because it has always been in combination with other drugs

dreamboat profile image
dreamboat

Hi, I have been taking it for just over 20 years, started on just 3 tablets a week, now on 7. I find it better to split my dose. Sometimes suffer from headaches and feel really tired,, therefore I usually have a sleep. My hair as thinned , but not too bad.Overall it works for me . I hope you do well on it.

lisamcdermott profile image
lisamcdermott

Thanks everyone for your comments I was a bit frightened go on the drug ..but started on sat feeling sick and having bad headache ..but if it sorts pain I will stick it out ..thanks again

nomoreheels profile image
nomoreheels in reply to lisamcdermott

The first few weeks are generally when you feel a bit rubbish because your body is getting used to it but usually it settles. Just remember to keep hydrated, drink more water than you normally do & if you're Rheumy has only started you on one or two days of folic acid then he may suggest increasing it for you. MTX is a folate antagonist & the reason for some of the most common symptoms so replacing what's lost often helps. I forgot to say I find splitting the dose helpful. I started on 15mg so had 2 tablets with meals.

Good luck. :)

flow4 profile image
flow4

I started it a couple of weeks ago - I'm due my 3rd dose on Thursday. I had some mild nausea for a day or so the first time, but almost nothing the second. Both times, I have been hit by extreme tiredness about 24 hours after.

I drink loads of water and take it a couple of hours before bed, as others here have advised.

The methotrexate does well for my joints; however, I keep an infection. I've been on about 4 or 5 rounds of antibiotics since November.

lisamcdermott profile image
lisamcdermott

Hi everyone ..thanks for comments ....I have just taking my 2nd course on sat of methotrexate ...I find myself getting sore mouth and tonge...any advice on what to take ..thanks Lisa

nomoreheels profile image
nomoreheels in reply to lisamcdermott

Ooch. Both are listed as very common side effects but usually ease the longer you take it. Try to keep to non spicy foods until it eases & keep hydrated. You could try a good mouthwash, I favour Corsodil. If it continues I'd contact your Rheumy nurse, if you were only told to take folic acid for a day or so she may suggest you increase it.

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