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Autoimmune disease

Methotrexate Support Thread

39 replies

GlitterEverywhere · 07/10/2018 15:26

I wondered if anyone would be interested in a Methotrexate Support Thread.

I have started taking it today. A bit nervous having read about all the side effects, but 8 hours in and ok so far.

OP posts:
lazymum99 · 07/10/2018 16:09

I'm deciding whether to start this for psoriasis and haven't yet plucked up the courage so I will follow this thread with interest.

GlitterEverywhere · 07/10/2018 18:06

Hi Lazymum99. It's nearly 11 hours since I took my first dose and I feel more or less normal.

My friend's daughter is on it and she advised me to take a pro-biotic supplement (the kids hospital advised her) which is possibly helping.

The Doctor only said 1 x 5mg folic acid per week but I've widely read 5mg every day apart from Methotrexate day is very beneficial so I think I might try that.

OP posts:
MotheringShites · 07/10/2018 21:34

Hi there. I’ve been taking Methotrexate since January and after a couple of weeks of minor side effects, I’ve felt better than I have in years! After ten months I have to remind myself how stiff and sore I used to be.

I’ve recently turned 40 and had trouble with my joints since my early teens. I was finally diagnosed with Psoriatic Artritis last December. I’ve tried so many other things but this is the only treatment that has really made a difference.

Good luck OP!

GlitterEverywhere · 07/10/2018 21:51

Thanks Mothering, that's really good to hear. I also started with problems in my teens but have managed to avoid MTX until now, I was very lucky to have a good few years of total remission but alas no longer!

OP posts:
GlitterEverywhere · 08/10/2018 08:02

Bit of a sore head and a bit bleurgh this morning but nothing remarkable, so that's positive.

OP posts:
Stopyourhavering64 · 08/10/2018 16:58

I take 20 mg methotrexate orally every Wednesday evening. Take 10 mg of folic acid Tuesday evening- been on methotrexate for vasculitis since last October
Main side effects have been fatigue and occasional nausea ( hence why I take it in evening) but at least by weekend I'm feeling better again.
I occasionally also get an upset stomach ( gripy pain and diarrhoea - but not every time)...I take loperamide for this.
However I have rheumatologist appointment next week and going to mention the GI problem and ask if I should have the sub cutaneous injection instead, which is apparently better tolerated

GlitterEverywhere · 08/10/2018 18:03

Thanks Stop. Trial and error I guess. Very tired this afternoon after taking the kids swimming but better after rest.

OP posts:
Confuzzlediddled · 08/10/2018 18:08

I've been taking mtx for about 4 years, switched to injection about 2 years ago as I was getting nausea. Im on 20mg and take 5mg folic acid every other day. Unfortunately I've recently had a prolonged flare of my rheumatoid, so may need a change to my medication regime but I haven't had any real problems with did we effects. 😁

GlitterEverywhere · 08/10/2018 18:13

Thanks Confuzz, it reassuring to hear some (mainly) positive experiences.

I expected to be floored but have been ok so far. Next dose will be the real test, as on holiday this week but back to work next week!

OP posts:
fiftyandfat · 08/10/2018 18:22

Has everyone had their chest Xray and pneumovax?
The NICE guidelines and patient safety guidelines are clear on this, but I have had a bit of trouble getting them organised.
I started methotrexate then had to stop because I should have had both before starting. Finally ready to start again next week.
The hospital has run out of monitoring booklets so I am still waiting for that.

GlitterEverywhere · 08/10/2018 18:58

I had the x-ray and getting the vaccine next week. Our hospital don't seem to bother with books - I haven't had one for sulphsalazine either!

OP posts:
GlitterEverywhere · 14/10/2018 14:02

Bleurgh, well it's hit me like a ton of bricks this week! Nausea and feeling shaky and headache Sad

OP posts:
CherryDrop7 · 15/10/2018 23:45

I’d also be interested in this please.

My 12 year old son has been on 20mg by epipen once a week for chronic uveitis.

He is so brave but still finds the side effects difficult.

GlitterEverywhere · 17/10/2018 08:18

Hi Cherry, I feel for him I really do because Sunday was totally brutal for me - I couldn't leave my bed and ended up at out of hours for anti nausea meds. It's so unfair that he has to deal with that at 12.

In Scotland there is a charity for Children with Arthritis and related conditions, called SNAC. Maybe there is something similar where you are.

I'm back to work today after being off sick because I was wiped out by the meds and I feel pretty bloody ropey to be honest

OP posts:
GlitterEverywhere · 09/11/2018 12:42

Well it's been very quiet around.

I haven't had a repeat of week 2 thank goodness, thanks to a more intensive anti-nausea meds regime, but still feeling pretty rubbish.

I'm being switched to injections this week, and will be moving the dose day slowly back so eventually will take it on a Friday night, so I'm hopefully back up to speed for the start of my working week.

I've horrible bought of mouth ulcers just now, for which they have taken more bloods to see what's causing it.

How is everyone else?

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lazymum99 · 16/11/2018 08:49

Took first dose with my dinner last night. Only 7.5g. Woke up at about 2am feeling really sick. It gradually subsided, came in waves. I will phone dr and see if I can get some anti nausea.
It probably only lasted about an hour but at the time you don’t know how long and I got a big panicky which didn’t help.
Will be gradually increasing to 15g

lazymum99 · 16/11/2018 16:50

Phoned dr who advised me to take the folic acid 5mg 6 days per week not just once. He also said i can reduce the dose next week and just go up slower. Hopefully my body will get used to it this way

Weetabixandshreddies · 16/11/2018 17:00

Been taking methotrexate since February. I take it every Friday and start to feel human again by Monday lunchtime. I really don't like it - I have a constant headache, nausea and fatigue from Friday afternoon until Monday afternoon. Then I gradually feel better until I start all over on Friday again. I now have macrocytic anaemia caused by it and my liver function tests are starting to go off. I take folic acid 5 days out of 7.

Have had the flu and pneumonia vaccinations this year. I would welcome a support thread. I feel very alone at the moment. It's hard because my days off from work are wiped out by the side effects so I have no relaxation or fun time at the moment.

HappyHedgehog247 · 18/11/2018 18:50

Hi everyone

I took methotrexate on and off for 20 years. Been off a year as TTC. I found the injection better tolerated than oral. I always got fatigue on a high dose. If I don’t take folic acid at least 5 days a week I get mouth ulcers. I always took in the evening to help with nausea/fatigue.

If it’s of any interest I’m on a Facebook page called Rheumatoid Arthritis Healing Naturally to try and support my body while off the meds. X

Weetabixandshreddies · 18/11/2018 19:03

Does anyone have any ideas on how to minimize side effects? I work Mon - Thurs so take Methotrexate on Fridays. I then start to feel ill by Friday evening, Saturday is the worst day and is a write off because of headache, nausea and dizziness. Sunday I feel slightly better though unable to do very much. Monday I feel better as the day goes on and then ok by lunchtime.

I take folic acid on 5 days.

I feel fatigued for the rest of the week. This week I didn't take it because we had a big event yesterday and today I feel brilliant - like my old self.

How can I make this more bearable? I'm loathe to take it Friday night because then it will wipe out Friday as well.

MaureenMLove · 18/11/2018 19:04

I take 25g of meth on Monday night, just before bed and 1 tab of folic acid on a Wednesday at bedtime.

Been taking it since August bank holiday and I can't tell you how much better I feel! The only side effects I had were a couple of weeks with ulcers, but I haven't had any since.

Bit gutted that in a moment of miserableness at the beginning of August I sold all my lovely shoes because I couldn't get them on any more. My feet were dreadful. Chances are, I could probably get them on now!

SarahJinx · 19/11/2018 23:15

Hi all

I’ve been injecting Mtx for around four years, I’ve been in remission for about 18 months. I hate Mtx with a passion - we’ll the side effects that is, so much so that I’ve just managed to convince my Rheum to let me start to wean down by 5ml at a time. I’m currently on 15mg after almost four years on 25mg. I hate the nausea and dizziness and general hing over feeling that I have for nearly two days.

My only advice is take your meds at the last second before you go to bed so that you can sleep off the worst of the side effects. If I don’t fall straight to sleep it makes me jittery and wired and then it’s very hard to relax. Drink lots of water before taking it, and in the morning. I usually have a dodgy tummy for the next day too. I takwficacidsoxdays a week 5mg and also inject Benepali on a Thursday. Mtx is a wonder drug but remission has come at a price for me.

GlitterEverywhere · 22/11/2018 11:21

Thanks for all your replies. It's good to talk to others who are going through the same thing.

I'm the same in that I have no life just now. I work on being well enough for work but that means I'm too broken to do anything else is my time off, which is tough with 2 young kids.

I've now done 2 weeks of injections and am toleraring them much better than the tablets.

I'm 6 weeks in in total and not getting any relief at all yet. But here's hoping.

OP posts:
Zoosie · 04/12/2018 06:59

Also on 10mg of mtx a week which I inject every Thursday.

My surgery won't prescribe folic acid more than once a week! Does anyone know where I can buy 5mg as regular folic acid seems much smaller doses.

lazymum99 · 04/12/2018 07:56

What reason did they give for not giving you the folic acid. I just rang my gp surgery and told them the consultant had changed me to 5/6 days per week and they issued a prescription.
You can get it off amazon though. There is a make called bio tech which has good reviews. £11 for 100.

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