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Diagnosed with RA this week... start Methotrexate today?

135 replies

TheSpottedZebra · 21/09/2024 15:08

And I'm really nervous!

Please give me all your words of advice, or even your honest experiences!

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Funtime17 · 21/09/2024 21:59

Family friend just died suddenly and young from being immunosuppressed from this drug

TheSpottedZebra · 21/09/2024 22:10

Funtime17 · 21/09/2024 21:59

Family friend just died suddenly and young from being immunosuppressed from this drug

Blimey, why were they taking it?

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Funtime17 · 21/09/2024 22:11

TheSpottedZebra · 21/09/2024 22:10

Blimey, why were they taking it?

Arthritis

TheSpottedZebra · 21/09/2024 22:11

SpellitwithaY · 21/09/2024 21:44

Welcome to the MTX club! I know people struggle with it but it's been a wonder drug for me. I inject 25mg weekly. Started about 8 years ago (at a lower dose obvs). I've never had any side effects, only positives.

I had issues walking even before starting and now no one would know I had arthritis. Good luck I hope your MTX story is as positive as mine x

Ah, thank you. Glad it's had such a positive impact on your life.
Hope I can copy you Grin

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TheSpottedZebra · 21/09/2024 22:14

Funtime17 · 21/09/2024 22:11

Arthritis

Sorry for your loss.

May I ask , what infection did they get /how?

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TheAmberGoose · 21/09/2024 22:16

Mentioned earlier I take for RA but forgot all the positives, before medication I was in constant pain, I couldn't even get out the bath by myself or turn over in bed. I was on methotrexate and another drug in combo for 5 years, and literally they were life changing. It takes time for everything to settle, however nowadays unless I have been on my feet for a significant amount of time, noone would even know I have anything wrong! I stopped methotrexate about 7 years ago, and went onto a biological injection which was even better, so if you find you are still in pain whilst on methotrexate definitely speak to your consultant, as biologics were truly amazing for me and nowadays I don't even need to take any painkillers or nsaids!

Habbibu · 21/09/2024 22:25

Are biologics also immunosuppressant? (I should probably just Google). I'm a primary school teacher and this is what has put me off immunosuppressants for so long. It's very hard to avoid infection in my job.

mynameiscalypso · 21/09/2024 22:41

Habbibu · 21/09/2024 22:25

Are biologics also immunosuppressant? (I should probably just Google). I'm a primary school teacher and this is what has put me off immunosuppressants for so long. It's very hard to avoid infection in my job.

They are, I think pretty much all of these drugs have to be. I actually found having them has helped my immune system though because it's no longer going crazy trying to attack everything in sight and is able to just do its job. I have a 5 year old and he brings all sorts of bugs home from school and it's rare for me to catch them even when he does something delightful like vomit into my hands.

florenceandthemac · 21/09/2024 23:25

I was diagnosed with psoriatic arthritis and first offered Methotrexate in February. I out it off until August because of the side effects...
And I've had none! Just had my eighth injection tonight and pick up my next prescription this week.
The nurse rang me today as my white blood cells were low on this week's blood test, suggesting I could have an infection, but was happy when I said I felt ok.
I do mine on a Saturday night before I go to bed, so maybe I sleep off the worst of it? But honestly, I wish I hadn't put it off for son long...

I'm on 12.5mg a week and take 5mg folic acid six days a week

florenceandthemac · 21/09/2024 23:32

Oh also, I asked for the injection from the start. I said I didn't even want to try and stomach the pills, and they were happy to oblige

Habbibu · 22/09/2024 11:47

Hope you're feeling ok this morning!

TheSpottedZebra · 22/09/2024 12:19

Habbibu · 22/09/2024 11:47

Hope you're feeling ok this morning!

Ah, thank you!
Quite grotty but I wasn't sick, so that's good.
I think it's going to be hard for me to separate real side effects from imagined/exaggerated ones, as I've been so worried about it.

Eg I THINK I have a bit of a sore throat this am. But do I? I get ENt stuff often so I probably do, but is it a normal one? I've got a headache, but is that just stress?
Tricky!

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nokidshere · 22/09/2024 17:35

I took my 25mg injection at midnight last night, and this morning I'm feeling bluergh for the first time in quite a while! Must be in sympathy for you lol.

Extreme tiredness & nausea (yes lots of carb snacking) but rarely
lasts more than a day 🤞🤞🤞 hope you are doing ok today.

TheSpottedZebra · 22/09/2024 19:11

nokidshere · 22/09/2024 17:35

I took my 25mg injection at midnight last night, and this morning I'm feeling bluergh for the first time in quite a while! Must be in sympathy for you lol.

Extreme tiredness & nausea (yes lots of carb snacking) but rarely
lasts more than a day 🤞🤞🤞 hope you are doing ok today.

Oh no! Maybe it was all my moaning and fretting infected you?
Hope you're youre feeling much better soon.

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YouBelongWithMe · 22/09/2024 21:33

Habbibu · 21/09/2024 22:25

Are biologics also immunosuppressant? (I should probably just Google). I'm a primary school teacher and this is what has put me off immunosuppressants for so long. It's very hard to avoid infection in my job.

I am also a teacher, have been on immunosuppressants since Jan and have been off sick far less than I was before. I found that i was off more often through symptoms of AI than i have been ill through being immunocompromised.

YouBelongWithMe · 22/09/2024 21:35

Hope your sore throat goes @TheSpottedZebra !

Tezza1 · 22/09/2024 21:53

I have RA and find that Methotrexate didn't do much for it. But that is just me. I know a couple of people who take it, and that's all they take, and they have found that it is all they need to control their RA. Both of them work in jobs where they are on their feet all day.

However, I don't find I have any real side effects from it. I know that the literature makes it sounds terrifying, but I haven't found it so, although I do need to have a liver function, etc blood test every three months. A few times after taking it, I have felt extra tired, or queasy, but because none of them are consistent or frequent, my rheumatologist feels it's just a coincidence. One of the joys of RA!

I still take after more than ten years because I now use a biologic - which was life changing - and from what I can gather the methotrexate helps the biologic to remain more effective for longer.

Tezza1 · 22/09/2024 21:57

Should have said that I take a 10mg Meth. tablet once a week followed by one 5mg Megafolate tablet two days later.

TheSpottedZebra · 28/09/2024 21:22

Thanks for all your support and handholding last week, everyone.
2nd dose now taken. My exciting treat post-drug is... mint tea and a hot water bottle. Woah, my crazy life Grin

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Habbibu · 28/09/2024 21:25

How are you feeling? Is it helping you?

TheSpottedZebra · 28/09/2024 21:25

@YouBelongWithMe did you start on Monday? Hope you're well if so (and if not!)

@nokidshere hope you're feeling better now?

@Habbibu did you chase up your appointment?

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Habbibu · 28/09/2024 21:27

Oh my god I forgot! Do you fancy being my PA?

YouBelongWithMe · 28/09/2024 21:29

Yes, took 10mg at midnight Monday night/Tues morning after a dire evening at Melanie Martinez 😭

Had no sickness or nausea.

Had to reduce my cyclosporine at the same time which was fine for a few days but now my face and several patches of my chest/arms are flaring terribly. Feeling really sorry for myself.

How are you feeling? Have you had your second dose yet?

TheSpottedZebra · 28/09/2024 21:29

Habbibu · 28/09/2024 21:25

How are you feeling? Is it helping you?

Hello again! Erm, I did feel quite rough for a few days. But I have no idea how much of that was real and how much was psychosomatic!

I had a dodgy tummy for 36 hours ish (nothing too dramatic) but had indigestion, which is never get, for about 6 days.
And a sore throat and a headache, and....

I can pop in to the hospital for my 1st 2-weekly blood test this week but I don't see the rheum until December again so no idea how I'd ask for the jabs.

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TheSpottedZebra · 28/09/2024 21:34

Habbibu · 28/09/2024 21:27

Oh my god I forgot! Do you fancy being my PA?

YES!
Alternatively, use your calendar app and set a reminder!

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