To use or not to use

debs36

Hello 👋

I'm nearly 60, and I have been diagnosed with prosaic arthritis and fibromyalgia, just to add to this, osteoarthritis in my knees.

I've joined the group as I'm struggling with pain control I'd love to hear people's lived experiences with methotrexate, I've been put on the meds but I'm reluctant to take them because of the side effects d I am quite susceptible to them chest infections .. any thoughts would be appreciated xx

claudsl

Hi @debs36

I used to take methotrexate and I can understand your reluctance to take it. It does suppress your immune system so you are more vulnerable to infections. While it is good at keeping pain under control, for me the negative side effects outweighed the good and I came off it. It made me very sick for 1-2 days after taking it and this was affecting my quality of life. However, I do know people who take it and the side effects are not bad at all so I think it can vary from person to person. My dad is on it and he says he feels slightly queasy sometimes but nothing too bad.

Here's an article with more information which you may find useful.

Methotrexate | Side-effects, uses, time to work

Hope this helps!

Claudia x

iwannerbeme

Hi @debs36

I started methotrexate around 6 weeks ago. Like you i was scared about starting. I built it up in my mind into something horrendous. . So far so good. The first week I felt a bit blah the day after, nothing much just under weather. The 2nd week the same only less blah. My blood tests have come back ok. I have had 2 so far. I guess its too early to tell about infections. Im going to be busy in December and I guess that is when i am going to get ill.! I do intend to wear a ffp3 mask again at times. Something i hated during covid. I am very strict about hand washing. My RA symptoms seem a lot better but they werent that bad when I started compared to how they were. So its hard to say if methotrexate is helping yet. I think it might be. I have a friend who has been taking it for years with no side effects. You cant really know unless you try, if it doesnt suit, you can try something else, you will be monitered closely. Good luck

jamieA

Hi @debs36

I know we are all different and how we react to both our chronic illness and treatment will vary so I think it depends on you and your tolerance of pain levels as to whether you have a choice in taking methotrexate or not.

I was 65 in late 2020 when I was diagnosed with PsA. In my case my pain levels were such I think I would have agreed to anything offered to allieviate my PsA pain. I was started off on sulfasalazine, then MTX was added in February 2021 and finally the biologic adalimumab was added before my PsA was brought under control in late 2021. I'm well aware that this cocktail leaves me immunocompromised so I take as many precautions as I can. I too am susceptible to chest infections - I had 10 in a year after having covid in early 2020 and before I was on MTX. In fact I have a chest infection now - but thinking back to the pain I was in before the medics came up with the cocktail to control my PsA I don't think I've an option to stop my PsA cocktail.

Like @iwannerbeme the main regular side effect I get from MTX is fatigue either the day after taking it or two days after.

I hope it works for you.