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Nervous about starting Methotrexate

18 replies

RumHam · 16/04/2022 20:46

I was recently diagnosed with psoriatic arthritis and I have it in my feet, shoulder and elbow. I have been prescribed methotrexate and I am due to start next week. I have started taking the folic acid prescribed with it already and I wont take it on the methotrexate days. I am starting on 7.5mg and will be on 15mg within a month or so if my blood comes back ok after my first two weekly doses.

I am sad I have to give up booze while on it. I can't lie, I do love a few JD and cokes while I watch TV at the weekend but I am more worried about side effects. I've never been on a drug this strong before. The strongest thing I take at the moment is just naproxen and co-codamol. Other than the scary side effects like liver problems, I am mainly worried about nausea (I have a lifelong phobia of puking) and hair loss/thinning. I did ask my rheumatologist for the injection instead of tablets as I have heard the injection causes less side effects, especially gut related ones but she said no and I have to start on tablets.

I've heard so many mixed things about this drug. On the one hand, I am excited to try it as I might finally have some psoriasis relieve for the first time in my life and hopefully the visible and painful swelling in my joints will improve as naproxen can only do so much for that but then on the other hand, I am beyond terrified to start it and think I am not bad enough with arthritis yet to need it - despite my left foot being completely swollen and I can't bend my or use my arms fully.

I am due to start on 25th April. I have a wee long weekend away from 22nd - 25th so my rheumatologist agreed I should start the night I come back.

Do you guys have any experience on methotrexate and have any tips on when is the day is best to take it? Just any advice in general would be really helpful

OP posts:
SpellitwithaY · 16/04/2022 20:52

I was so nervous before starting but it's revolutionised my life. My arthritis was bad but not do much the psoriasis.

Wouldn't be without it and I inject 25mg a week. I don't have any side effects. I also still drink.

Start. See how you get on. See what suits you. You may be fine.

Good luck x

RumHam · 16/04/2022 20:58

@SpellitwithaY

I was so nervous before starting but it's revolutionised my life. My arthritis was bad but not do much the psoriasis.

Wouldn't be without it and I inject 25mg a week. I don't have any side effects. I also still drink.

Start. See how you get on. See what suits you. You may be fine.

Good luck x

Hi thanks for your reply :) did you start on the tablets and then switch to the injections? How much are you allowed to drink? I've been told not to drink at all yet my gran is on the same dosage and she was told a few drinks a week are fine to have. Think it all depends on the rheumatologist what they allow and recommend x
OP posts:
topcat2014 · 16/04/2022 21:01

I have been on 15mg for eczema for five years. No effects. And (being male) hair loss was a worry.

Not sure about psoriasis but I had a horrible time on o t her drugs like cyclosporin and azathioprine.

SpellitwithaY · 16/04/2022 21:04

Yes I did start on tablets. Apparently injections are better on the tummy and and it's about 10% more effective. I

RandomMess · 16/04/2022 21:04

DH found it amazing and improved enough to come off it, this has happened twice and is currently off it again.

BoodleBug51 · 16/04/2022 21:10

My Dad was almost crippled before starting it for his rheumatoid arthritis. He injects once a week, and it's been nothing short of miraculous.

He hasn't stopped drinking.... and his liver function seems fine.

mynameiscalypso · 16/04/2022 21:13

My dad takes the tablets - has done for several years - and still drinks normally on it. All his liver results have been totally fine. I also have PsA didn't get on with methotrexate myself (felt fine but liver results went a bit crazy) but the NHS guidelines with PsA mean that you have to try and 'fail' a couple of the first line treatments before you get offered something like biologics which are much more expensive.

NK346f2849X127d8bca260 · 16/04/2022 23:18

My mother has been on the tablets since 2008 for RA, my father has also been on them for psoriatic arthritis for many years too. No side effects as far as i an aware, both don't drink, but never have.

Thisbastardcomputer · 16/04/2022 23:29

I've taken methotrexate for about 10 years, it does sometimes make me nauseous but I get round this by taking it at bedtime.

Drinking was mentioned to me by my rheumatologist, a medium sized glass of wine a day she said would be fine but I pretty much don't drink anymore. Given the choice between booze and cigarettes I'd have chosen cigarettes but the menthol ban put paid to my last remaining pleasure, bastard EU.

Hercules12 · 16/04/2022 23:37

op- I’ve got Psa and on methotrexate - now injections to reduce effects on stomach and increase how much is absorbed. There’s a really helpful psa Uk group on Facebook which is very active and has lots of experienced people. It’s also very sensible too which is important I think.

Crispynoodle · 17/04/2022 00:21

I have PSA and RA I take 15mg injected every week. It's fine I had less side effects after I had taken it a while. It's working well with my biologic thank goodness

Lillipops · 17/04/2022 00:37

I'm not sure what to say I took it for psoriatisis...brutal. My hair fell out, I felt awful... felt like it was poison. Best thing I ever did was not take it. No results, if anything made it worse. Now on biologics. Was taking Humira. 18 months psoriasis free then I built up antibodies due to start a new biologic in the next couple of weeks. Psoriasis is going nuts I feel like I'm under attack 😬

Sparklefish99 · 17/04/2022 06:09

I take 15mg a week for Rheumatoid Arthritis and I’ve had no side effects at all. I was worried about the effect on my immune system but that also doesn’t seem to have been a problem - when everyone in my household got Covid I was the only one to avoid it (miraculously!). I hope you have a good experience with it.

RumHam · 17/04/2022 12:52

Thank you all so much for your replies. As nervous as I am to start, it's comforting to see how many other people take it with little to no side effects. I've got the worst health anxiety and even struggle to take paracetamol some days so it's going to be a challenge but it's good exposure for my anxiety too as well as more importantly hopefully a good remedy for my psoriasis and arthritis

OP posts:
LetsGoCrazyPurpleBanana · 17/04/2022 13:34

I have RA and been taking it both tablet and injection on and off for almost 20 years. Had breaks to conceive. Now on 20mg tablets as anxiety meant I couldn't inject myself anymore. I take mine just before bed,take folic acid other days and feel rough and nauseous the day after. Some weeks are better than others.

RumHam · 25/04/2022 12:10

Thanks everyone so much for your replies. I was due to start today but I have came down with cold symptoms. I called my GP and explained to them and they said to push it back a week and start then. I am negative for Covid so it must just be a cold or something. I was in Glasgow at the weekend and the Hydro to see Andre Rieu at the weekend so maybe picked up something while I was away. It was worth it though. I can barely walk for the pain in my feet and knee at the moment but it was all so good. I needed that wee boost before MTX. Will keep you all posted how it goes next Monday :)

OP posts:
Abraxan · 25/04/2022 12:22

I inject 15mg a week. I was on tablets but they made me incredibly fatigued and also nauseous, even as a split dose.

Like others I do still drink.
The official paperwork says a very low amount, something like 4 units a week, but both my GP and my rheumatologist said 10-14 units a week was fine. I've had no issues with drinking with it and my bloods have been fine throughout.

Litt1eDorrit · 25/04/2022 12:36

My dm was on this and it helped her immensely (rheumatoid arthritis) I know for a fact she still drank wine on it to no ill effects.

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