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Original poster

Fuck off methotrexate

19 replies

iamaboveandBeyond · 01/10/2015 04:01

Fucking horrible drug. Hate it. I am now awake having jabbed yesterday and feeling like i could spew at any moment, with a banging headache.

The tablets made me ill last year so i changed drugs, other DMARD also didnt work so they want to try the MTX injection. This is my fourth week and i HATE it. Feeling less sick than the tablets, but the headaches are new, and my joints are flaring awfully (it seems to make my EDS worse!?) I honestly cant cope with it for six months til my next rheumy appt :(

How long do i have to give it at a minimum, do you reckon?

OP posts:
scarfaceace · 01/10/2015 08:58

I think about 12 weeks. Flowers

bigfatfeet · 01/10/2015 09:11

I'm sorry - that sucks. Are you taking folic acid as well?

Original poster
iamaboveandBeyond · 01/10/2015 09:56

Flowers thank you both

Yep, i'm taking folic acid all but my mtx day.

OP posts:
timeforabrewnow · 01/10/2015 10:23

I used to get a cracking headache and full nausea too (for 24 hours after injection). Side effects got a lot better after 3 months and boy does that stuff work for me. It was worth persevering with (for me) anyway. Good luck + hope it ends up working for you.

Original poster
iamaboveandBeyond · 02/10/2015 07:34

Had blurry vision all day yestrday too, kept moaning at Dh for leaving dirty pans in the oven - thinking it was smoky - when it was just my eyes! Blush
Only occurred to me late yesterday that it could be another side effect (as i have eye ishoos anyway from my eds so didnt really think about it)

Still feeling sick and headachey today but nowhere near as bad as yesterday. Took a load of painkillers before bed so did at least manage to have a semi-decent nights sleep.

I'm really hoping it does improve and work. Not gonna hold my breath though as it did neither when i was on the tablets.

OP posts:
Borninthe60s · 02/10/2015 07:40

Can I ask why you are taking it? I was prescribed it for RA years ago and it didn't suit me, I told my consultant I couldn't cope with the side effects and it actually didn't ease the symptoms. It's a toxic horrible drug! Personally I would go back and explain how you feel and what's happening and see if there's an alternative.

Original poster
iamaboveandBeyond · 02/10/2015 07:54

I have psoriatic arthritis and (when it flares) difficult to treat psoriasis. To give a condensed med history, when i was first diagnosed i went without DMARDs for a while as i was breastfeeding and was told i couldnt take any. Steroid jabs made me worse.

A while later i found out the bf thing was a fib and started sulfasalazine. Gave it about 12m - No help. Then stopped bf and changed to methotrexate tablets. Made me sick and also made my dysautonomia 4x worse, as well as not improving my arthritis. Again, told to perservere so about 9m - no help. Changed to leflunomide, again took it for about 9m with no help. Dysautonomia has not improved since mtx so hoped it was just a coincidence because of my declining health. Told i had to try mtx jabs before anything else, took about another 2m to sort out training to use them Hmm

OP posts:
IamSantaClaus · 02/10/2015 16:40

It's a horrible drug isn't it ? I'm just about to go back to the consultant to see about changing it as the nausea is becoming unbearable.

You seem to have been through a few drugs :( . That sounds miserable And I'll sure all of them have a load of their own side effects .

Did methotrexate mess with your cycle at all ? Mines all over the place and I live in constant fear of pregnancy despite using contraception .

Miserable drug Sad

purplepavements · 02/10/2015 16:54

I'm on methotrexate again which I hate, so so much, they had me on anti tnf drugs (remicade/infliximab) for a while but decided they weren't working when I really felt they were. So I'm back on bloody methotrexate. Only 15mg this time but I hate it! You have my sympathy x

Original poster
iamaboveandBeyond · 02/10/2015 16:55

It really is :(

I've actually been quite lucky with side effects on all of the others, most annoying being that the sulfasalazine kept dyeing my toilet bowl yellow!! Grin not had any cycle problems, but i do have a mirena so that could be why. And dh is snipped too, just in case

OP posts:
Original poster
iamaboveandBeyond · 02/10/2015 16:57

Oh purple, thats crap! :(

OP posts:
Marshy · 02/10/2015 22:29

Have you discussed trying humira?

Life changing for me. Fab pain control/ reduction of inflammation and hardly any side effects, maybe a bit of a headache on injection day.

I couldn't get on with methotrexate

queenoftheschoolrun · 02/10/2015 22:54

Methotrexate made me really ill. I was on it for nearly two years and wish I'd put my foot down and refused to take it earlier. In the end I changed consultants, got a different diagnosis, different medication and no side effects. But that's two years of my life I won't get back.

My first consultant was all about ticking boxes, said there were strict guidelines about what drugs she could give me and if I didn't stick with the methotrexate I wasn't entitled to anything else. My new consultant was more concerned about my quality of life, why the methotrexate wasn't working and what else would. It might be worth asking your GP if there is anyone else you can see. I hope you can get it sorted, you have my sympathy.

Original poster
iamaboveandBeyond · 03/10/2015 14:20

Thank you both :)

I think my plan of attack is... To give it two more months for the side effects to lessen, if they dont i will call my rheum, explain i am not taking it anymore and ask for an anti tnf. They say yes - hunky dory, they say no - i demand a second opinion.

If side effects do subside, give it another three-ish months to actually improve my health, then if it doesnt, as above.

OP posts:
queenoftheschoolrun · 03/10/2015 20:19

That sounds very sensible. Good luck!

TakeMeUpTheNorthMountain · 03/10/2015 23:57

I'm getting great results from tocilzumab in self injection form for my ra and psa after ba lengthy struggle with mtx so it might be worth asking the rheumy when you go. Good luck with the mtx. I found losec helped with stomach upset

bigfatfeet · 04/10/2015 00:02

Just to redress the balance, I had some side effects initially but methotrexate has been a miracle drug for my RA and I've been fighting to stay on it even though it's affecting my white blood count - hang on in there and see if things improve but don't be afraid to push for biologics if they don't.

LapsedPacifist · 04/10/2015 00:57

My DH has been on this drug for 2 years. It is awful and there is no alternative for him - he has to keep taking it to keep his auto-immune disease in remission. Sad

He has turned into a very depressed, angry and scary person, and our marriage is on the rocks. I have been seeing a therapist for the past 6 months to try and keep our family together. DH won't seek any help or counselling for himself.

Many apologies for this negative and depressing post, but frankly I'm at the end of my tether. My desperately shy son with ASD has just started uni and told me it's a relief to get away because 'at least he'll be creating his own stresses' away from home.

TakeMeUpTheNorthMountain · 04/10/2015 01:41

Lapsed can I ask why there is no alternative to the mtx for him? It sounds very stressful I'm sorry. Sometimes you forget how hard it is on the family of the ill person

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