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Methotrexate - Anyone used it?

31 replies

HadEnoughSoTired · 07/06/2023 12:29

I am due to go on this and I've been wondering if it has actually helped anyone feel better, or worse? I don't really know anything about it and google isn't that helpful.

TIA

OP posts:
user1471518104 · 07/06/2023 12:32

Yes for psoriasis. It was a game changer for me. No side effects.

Have to have regular blood tests. Obviously there are a lot of risks to consider especially if you are wanting to conceive at some point.

HelpMeGetThrough · 07/06/2023 12:33

Yes, I've been on it since 2018, I inject 20mg a week for Rheumatoid Arthritis. It has made a difference to me.

I'd recommend taking it before bed, as it can makes you feel tired later in the day, if you take it in the morning.

HerbsandSpices · 07/06/2023 12:35

A family member did. It made them extremely depressed, so they had to come off it. They also had to take a folic acid supplement with it.

Azealeasinbloom · 07/06/2023 12:39

I had it as part of chemo, but that aside, while I was taking it, my eczema was all but gone. Still had dry skin of course, but the relief of no itching and cracking was a surprising benefit .
I think you have to understand the side effects, the dosage you would be taking and discuss any dietary changes/ supplements ( folates?) which may offset these.

HadEnoughSoTired · 07/06/2023 12:49

It's for Lupus. At the moment I'm struggling to get out of bed due to pain, tiredness and i think, depression. I've forgotten what downstairs looks like.

OP posts:
Fraaahnces · 07/06/2023 12:58

It should definitely help the pain and other inflammatory symptoms. It can exacerbate anxiety/stress, etc… (‘Roid Rage is a real thing for some people.) It can also make you very, very hungry. My mum was on it to alleviate symptoms of lung cancer that had metastasized to her brain. She had been anorexic all of her adult life and she died with more meat on her bones thanks to being on methotrexate for the last month or so of her life than she had ever had! (It’s weird to say this, but she looked better than ever.)

HappyHamsters · 07/06/2023 13:01

My partner is due to go on this for arthritis so these are very helpful. Thank you

Thisisbollocksmark · 07/06/2023 13:03

I've taken it and it made me so violently ill, I ended up in A&E with severe dehydration.

I'm not trying to put you off; mine was quite an extreme reaction.

HadEnoughSoTired · 07/06/2023 13:03

Oh no! I've only just been weaned off prednisone and the hunger was horrendous. I've gone up 4 dress sizes in a year. I used nasal spray last week and woke up in the night so hungry and wondered why. It was a corticosteroid spray.

Thanks for that. I will bring up that point as nobody at the hospital has :/

OP posts:
HelpMeGetThrough · 07/06/2023 13:29

HadEnoughSoTired · 07/06/2023 13:03

Oh no! I've only just been weaned off prednisone and the hunger was horrendous. I've gone up 4 dress sizes in a year. I used nasal spray last week and woke up in the night so hungry and wondered why. It was a corticosteroid spray.

Thanks for that. I will bring up that point as nobody at the hospital has :/

I've had zero hunger with it and certainly no rages. Colleague of mine takes it and nothing for him either.

RandomMess · 07/06/2023 13:31

DH took it in 2 separate occasions for PA and both times was eventually able to come off it. First time was a year the more recent time more like 5 years.

It made him very tired but he found the benefits to the pain and swelling outweighed the few days of feeling rough.

Gillybob · 07/06/2023 16:36

I have taken methotrexate for the last 4 years for Rheumatoid Arthritis. I was on tablets at first and they can affect your stomach more than the injections. It causes nausea, diarrhoea and a kind of hungover feeling for me that lasts a day or so after taking it. I now take 15mg/week injected which has helped my RA but the side effects are still there even with 5mg folic acid every day but methotrexate day. The possible side effects look scary but the serious ones are rare. I hope it helps you.

BinnityBoo · 07/06/2023 16:44

Not personally but my dad takes it for rheumatoid arthritis and it's been great for him. He injects once weekly.

OakElmAsh · 07/06/2023 17:44

My mother is on it for Rheumatoid Arthritis. She takes tablets. It has worked really well for her, with very little side effects, apart from her catching colds & bugs more often than she used to before

BreviloquentBastard · 07/06/2023 17:46

Dad takes it for an autoimmune disease, makes him very nauseous and ill but does help with the pain. On balance he says he'd rather feel sick than be bedbound in pain.

HelpMeGetThrough · 07/06/2023 17:51

With the sickness and tiredness, they do suggest taking it before bed.

Jeevesnotwooster · 07/06/2023 17:57

I took it for RA. It was reasonably effective at treating inflammation but side effects weren't good. I got a horrible rash the first time I took it (consultant tried to say it was a seafood allergy but I've never been allergic to that) and also any time I increased the dose. I also felt sick and tired. Worst though was the depression. Almost suicidal. I finally had an appointment with another consultant who believed me and said that can happen for people who have a history depression, as I did.

It will probably help you but do insist on trying something else if the side effects are bad

Cupofteaneeded · 07/06/2023 18:13

I had it prescribed for Psoriatic Arthritis after being weaned off prednisolone (had that for years and it really worked for me with few side effects). The methotrexate really didn’t ease any of the pain, made me feel low and eventually after about 6 months, I came out in a nasty rash. Taken off it, also tried leflunomide and sulfasaline but none of them have been much help. Now on biologic injections and they have made such a difference

HelpMeGetThrough · 07/06/2023 18:23

Now on biologic injections and they have made such a difference

I had the opposite with that (adalimumab), I had multiple nasty infections. On Baricitinib now and that's good. Bonus too that it's not an injection, just one tablet a day.

Sunmoonandstarsforever · 07/06/2023 19:09

I was on tablets as a first step in my treatment of Psa, they made me nauseous and have diarrhoea and feel generally yuck, my hair started coming out eventually so I stopped it. Years later I’m on biologic injections monthly called Cosentyx- life is still hard but these help

NoSubmarinesInTheSky · 07/06/2023 19:26

I have been on Methotrexate for about 8 years now for Systematic Lupus Erythematosis (SLE). I inject 15mg a week and have real issues with sickness/vomiting but it helps my Psoriasis so I put up with it. It's a bit of a task to get the right dose but once you have it hopefully you'll start to feel better!

Best of Luck 💐

mynameiscalypso · 07/06/2023 19:29

I was on it for about 6 months for PsA. It worked well on my symptoms but my liver didn't like it at all. I found I lost weight on it because I felt sick on that and the folic acid that you take alongside. My dad has been on it for years with no side effects at all.

RedVanYellowVan · 07/06/2023 19:33

On it for over 2 years. No noticeable side effects whatsoever. I had monthly blood tests at first but all was well so just every three months now.

Justonedayatatime11 · 07/06/2023 19:37

I inject 25mg once a week. Initially started on tablets but couldn't deal with the sickness.
I inject before bed, it does make me feel sick for 48 hours or so, and my god, the noises my stomach makes after I've injected are horrific! But it definitely definitely makes a difference.
Regular blood tests, once a month. I have lupus and rheumatoid arthritis. It's a scary drug but it can definitely improve your quality of life. Good luck with it!

LolaMacbeth · 07/06/2023 19:47

My daughter is 12 years old and takes injections 20mg weekly since last December for Uveitis.

She has recurring fatigue, nausea and developped panic attacks and anxiety related to the pill taking (not just methotrexate) so we changed to injections.

My daughter was taking steroids every day for a year to control her eye inflammation and developed glaucoma which ended up with her having to have emergency eye surgery as nothing was reducing her eye pressure. Which also contributed for the decline on her mental health.

The methotrexate is controlling the uvietis atm so it has been a month now without steroids.

There is alot of risks that come with taking methotrexate, and everyone reacts to it differently. I would suggest reading as much as you can on the Internet, sometimes doctors and nurses do not disclose every risk and symptom that comes with it.