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Autoimmune disease

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Methotrexate

11 replies

xTinkerbell · 01/11/2023 11:25

Just looking for some experiences of Methotrexate and hopefully some help calming my anxiety. I suffer from anxiety anyway so this is probably making it all worse.

My mum has just been diagnosed with RA and started on methotrexate. The plan is to get her up to 20mg. I have two small children (4 & 2 next month) and a third on the way. My mum is my childcare and watches the kids when I work or if I need them watched. We’re also very close so spend a lot of time together. I am so worried about bugs etc from the kids. They are both full of colds at the moment and we are staying with her until Saturday when we move into our new house. I’m paranoid about every cough or sneeze, everything she touches that they’ve touched etc despite the fact that she’s being meticulous with her hand hygiene. I feel like we constantly have colds & sickness bugs in our house and I just don’t know what to do. I can’t avoid her all the time and obviously I need to work but I don’t want to make her sick.

Im also so worried about side effects and her being miserable with it.

Someone tell me it’s not all bad? I absolutely know that benefits to her RA are worth it but my god the anxiety is so bad I’ve just gotten in the car to drive to the shops and ended up in tears.

OP posts:
Howzibe69 · 01/11/2023 11:42

My DM is 85 has RA and has been on methotrexate for years. Has grandchildren and great grandchildren of various ages and attends a day centre where she obviously mixes with other people. She's been fine on 17.5mg . Has other health issues too including Dementia but methotrexate does not appear to have affected her negatively at all and has coped well generally re not picking up bugs. Don't think she has caught covid!

squashyhat · 01/11/2023 11:44

I was on it for 20+ years for RA and was fine. It's very effective. I am only changing medication now because it can cause liver damage (she will have regular blood tests to monitor this). My life doesn't involve contact with kids but I never took any particular precautions to avoid infection though I am up to date with covid and flu jabs.

audihere · 03/11/2023 13:36

I've been on mtx for over 5 years (alongside another immune suppression med). I've honestly not caught any more illnesses whilst I've been taking it, in fact I'd say I've caught fewer. Some of this will be down to me being more aware of avoiding ill people and busy places, but I honestly think some of it is that mtx is allowing my immune system to just fight off bugs rather than attacking my own body (just my theory!)

fifteenfifty · 07/11/2023 18:17

I love methotrexate. No side effects, no bugs, it's been entirely positive for me.

BocaChica · 07/11/2023 18:48

I took MTX to control RA for a few years ( before being moved to a biologic )
I think I recall that there were some papers around which suggested there is little benefit in increasing the oral dose of MTX above 15mg per week. If a greater dose is required then it should be done with injectable MTX ( which is more effective in some way....my recollection is 15mg of injectable would be the dose instead to 20mg oral )

mynameiscalypso · 07/11/2023 18:56

MTX didn't work for me for other reasons but I found that starting any type of treatment had a hugely beneficial impact on my overall immunity. Mainly because my immune system was no longer to focused on trying to destroy my body and could actually focus on fighting off illnesses. My consultant said it was a known 'thing'. My DF has been on MTX for years and is mid-70s. His immune system seems fine. He's had Covid and normal colds in that time but only in the way you'd expect for someone with two small grandchildren. He looked after my niece for the weekend when she had noro and he didn't catch it at all.

Aquarius1234 · 07/11/2023 20:42

Does anyone know how much Folic Acid to take. And did you get it on prescription?
5mg?
I assume even if you take the methotrexate in the evening, it's OK to take the folic acid sometime the following day?
I have been advised to start on 10mg methotrexate then 20mg in time.

audihere · 08/11/2023 16:00

I take 5mg folic acid every day apart from the one day per week that I take 20mg methotrexate

and I get it on prescription

noskilled · 08/11/2023 16:14

My dad has been on it for RA for years. I’ve given him COVID 2 times now and I was always sicker. However; he does get very unwell with very small things and I have to be very careful. But life is for living

DiDonk · 26/11/2023 17:03

Am just coming to the end of my first year, I got all the side effects to begin with but once it started to work they mostly dropped away.

Has been fantastic generally, pain and stiffness not entirely gone but massively diminished, skin better. Doing more sport and body can cope with higher levels of activity which is great.

I did get shingles which was shit and have had a quick bout of COVID which wasn't so bad, otherwise I'd say have had fewer colds than normal, at least I haven't had every family cold and cough going around, don't feel as if I'm a particular illness magnet.

Heatherjayne1972 · 23/12/2023 18:28

I was told that with mtx you have to be very careful about bugs.
the medication reduces inflammation
but inflammation is what (often) makes you feel ill
so you could be much worse than you realise

if you catch covid or flu etc

in fact the consultant and the hospital said I should contact the gp and it flagged up on my notes and if I get ill I’m to insist on a doctor appointment ( gp been fairly good with tbh)

but the benefits massively outweigh the risks

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