Methotrexate side effects : Hi all can anyone tell me... - NRAS

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Methotrexate side effects

nattynooo profile image
22 Replies

Hi all can anyone tell me if I am going to get Side effects to the Methotrexate, do they start immediately from the first dose?? I had my first 15mg last night and apart from feeling extremely tired. I feel ok.

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nattynooo profile image
nattynooo
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22 Replies
oldtimer profile image
oldtimer

Sorry - can't give you a clear answer. It does seem to vary from person to person. This is a drug that builds up in your body - taking 12 or more weeks to work, so side effects may be postponed.

James53 profile image
James53

I had bad headache and tiredness. These can take a few weeks to develop. Also keep check on bloods and if breathless go to Rheumy team ASAP as Methotrexate can cause serious lung disease. All the best

popsmith1874 profile image
popsmith1874

Drink plenty off water as that usually helps with the side effects i sometimes am a bit tired but RA makes you like that anyway

bedfordlodgers1 profile image
bedfordlodgers1

I started methotrexate on 18th Jan this year, I didn't read the instructions properly and was so obsessed with the once a bit that I was only taking one tablet instead of four for a month!, but hey ho have now been taking the four and it is now going ok. The three month trial will be up by the time I go to the rheumy end of April. No side effects so far so keeping my fingers crossed. Having a foot operation in May so will be off my feet for 6 weeks. I have peripheral neuropathy and nystagmus so if you see me coming excuse the little drunken person trying to walk straight. Hope all goes well for you. Will remember to drink plenty of water!.

nomoreheels profile image
nomoreheels

There's no knowing I'm afraid though common side effects are usually manageable & the folic acid tablets are prescribed to ease any you may have. Therefore my experience may not echo yours but when I started MTX my Consultant recommended I didn't take my 15mg all in one go, which made sense to me, so I did as suggested & divided my dose through the day & took 2 tablets with 3 meals. I was fine on that initially but then started feeling a little nauseaous so my folic acid was increased from just one the day before to one the day after as well. I've been on it 8 years, injecting for 7. I'm currently on 17.5mg & 6 folic acid weekly & a little more tired & have less appetite the day after MTX day.

I hope you find it works for you. Do bear in mind though your Rheumy may increase your folic acid should you start to have any disruptive side effects, that is if you've not started on the highest dose. There's no specific recommendation for prescribing folic acid with MTX so it's very much each Rheumy's preference, hence why I'm now taking 6, the Consultant who initially prescribed MTX only recommended it twice weekly.

Ali_H profile image
Ali_H

The simple answer is "some do, some don't!" I wouldn't spend too much time worrying about them if they are not becoming apparent and hopefully you won't get them.

All the best

Ali

Amhoarten profile image
Amhoarten

I was absolutely fine for 6wks. After that I got reflux, migraines and the dreaded fatigue. They say it takes x amount of time to get in the system so I always go on rule of thumb if it takes so long to work then the side affects can take that long to appear. Hope it suits you.

Donpablo profile image
Donpablo

Keep a close eye on your health while taking them and don't be afraid to be a nuisance with the doctors and rheumatologist . This is a harsh drug and your health is more important than being to shy to talk to a doctor. Listen to your body .

RA13 profile image
RA13

Hi Methotrexate is the best drug I've ever been on for my RA but it's a seriously troublesome drug too. Make sure you take it with food (there's no recommendations out there but it helps with the nausea). Also take it at night so you don't notice the nausea as much. Nausea is the main symptom that I had, at least one you can feel. Just make sure you only take it once a week and not more. Also don't forget folic acid too. Once it kicks in everyone I know thinks it's a highly effective drug and hopefully you'll start to feel better soon. Hope that helps. X

nattynooo profile image
nattynooo in reply to RA13

Yes thank you. I take it after dinner on Sunday night. Then to bed. Then folic acid after tea on Monday. Looking forward to it kicking in and actually helping.

isobel65 profile image
isobel65

I am one of the lucky ones with no side effects but yes I do feel very tired and I am presuming it's due to the methotrexate.

Joy_1 profile image
Joy_1

Think positive - you may be one of the ones that don't get side effects.

And if you do then come back to the Forum and we can all help I'm sure.

I ended up with 4 side effects but they were all solved with a few easy peasy nifty tricks.

bedfordlodgers1 profile image
bedfordlodgers1 in reply to Joy_1

Thankyou all so much for all your replies about the methotrexate. I saw the rheumy last week and he has put the pills up to 6 a week. Have been feeling rather sick this week but am hoping things will get better. Drinking lemon and ginger tea to see if that helps. Not sure how many Folic acid I can take in one week. Am off to hospital next week to have my foot pinned together. 3 months of not sure but have arranged the house so that I can get about in a power scooter[ hark at me, who do I think I am speedy motors!). Love to allx

Joy_1 profile image
Joy_1 in reply to bedfordlodgers1

Folic Acid solved my nausea side effect from MTX. I tried increasing it from 1 to 2 5mg tablets a week, that did not work. Then tried 3 then 4 then 5 times a week. Did not work.

Solution = 5mg Folic Acid 6 times a week (ie every day other than MTX day). Yippee no more nausea!

Stats12 profile image
Stats12

Hi

I'm in the same boat! Took my first dose of MTX 10mg last night... feel ok, just tired like you... into the unknown 🙂

Been told to take Folic acid on Fri - so that's Mon for MTX & Fri for Fol 😜

Hope everyone is ok under the circumstances!

Take care all

Sue

Xx

Frankiefarr profile image
Frankiefarr

Having failed on three dmards and now trying my fourth I would say don't read the leaflet first and just se what happens. I found each time they rechallenged me on methotrexate I was fine the first dose then developed severe side effects. But I know so many people who have absolutely no side effects on it at all and it's a wonder drug. Every drug is different with every person so you just have to keep trying. Good luck x

Gameo profile image
Gameo

I will totally agree with James 53 l to started on mex but my rummy did not do a lung function test before and after six months with the result l now have to have tanks of oxygen at home as l have a condition known as mex lung by the nurses who came to show me how to inject my benni biologic if you can ask for this test it will give you peace of mind if nothing else good luck to you for the future

nattynooo profile image
nattynooo in reply to Gameo

Good God thats awful. It is reversible??

helixhelix profile image
helixhelix

Hopefully you had a chest x-ray before you started so that should have made sure your lungs are ok. If not, do ask just in case although it is very rare.

Generally the serious side effects like major allergic reactions start immediately, so looks like you'll be ok. As for the rest it depends! I was fine for over a year, and then got mouth ulcers. Luckily once I swapped to injections they went.

But really most people are fine. This forum isn't representative.

Gameo profile image
Gameo

I did have a chest X-ray and to this day my lungs are fine you ask is it reversible at this moment of time no. I also found out that the hospital l attend do not carry out this test but if you have a breathing problem then you will get the test. As to this being rare l can only say that may be the case but l fall into the small number that it affects and l wish that l had the test as l would not be in the problem l find myself in. All l wanted to do was to make you aware that this problem exists and it is better to know then not

Debkimly profile image
Debkimly

My daughter is a pharmacist and she said methotrexate was the gold standard for RA. I started to read all the side affects but stopped. So far I have only had a few mouth sores and if I take the pills all at once with a full glass of water no sores. My personal take is expect no side affects. I don't like taking the methotrexate but it is better than have pain and joint problems in the future.

bedfordlodgers1 profile image
bedfordlodgers1

Thankyou for all your letters on methotrexate, I seem to be ok with them. It is really helpful to know other peoples views on it. Am having my foot fused in May but seem to be suffering with terrible pain in my shoulders so I am thinking it could be the arthritis. Have a wonderful Dr who gave me steroid injections yesterday as he is worried I will not be able to use crutches. Hoping everyone is getting some joy with the odd sunny days, it always makes me feel better. Even a good cry seems to do the trick, it must relax the muscles!!!.

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