newly started Methotrexate

[Hollo68]

hi I have sub cutaneous lupus SLE my symptoms have progressed over the last year to abdominal bloating, mouth and nose ulcers, sore eyes trouble focusing, silly flitting pains in single toe or knuckles and absolute tiredness I started Methotrexate 6 weeks ago and after 3 doses my lupus hit me so bad with a major flare, the worst rash on my shoulders and upper back and arms and the worst fatigue (worse than covid) I am currently signed off work and maybe have 40% of my normal function of daily living. My knees hands and back are aching has anyone experienced this please and does it stop when you reach the 12 weeks of meds or do you have to stop it? Appreciate any advice

[PMRpro]

I wasn't on MTX for lupus - but after the first week the fatigue started and by the end of week 3 I only felt human for about 12 hours on the day before the next dose. I'd agreed with the rheumy if I had any problems I could stop for a few weeks for a business trip to South Korea so I did. By the time I got back I was starting to feel back to normal, I'd never have managed the trip had I carried on taking it. I had other adverse effects - and we agreed I;d not carry on taking it. There is no point taking medication that makes you feel worse - I'd never felt that bad with the illness and no medication!

[Hollo68 in reply to PMRpro]

Thank you I feel like this I’m just waiting for consultant to get back to me

[Christineosh]

I have been on most drugs and they all have side effects. Some can get away with nothing and have great successes

Ween off it and see how you are , then ask your specialist to try something else.

How can it be worth can it be any use being worse on a drug.

I have tried all of them and now only take Predisalone

[Hollo68 in reply to Christineosh]

Thank you

[lupie46]

Hi. After 12 weeks on mtx it settled for me and I took it for 12 years. I've recently had to switch to Mycophenolate as mtx stopped working. There are a few options, so speak to someone. Good luck!

[Hollo68 in reply to lupie46]

Thank you it gives me hope 🙃

[Hamptons]

I had that and it was deemed to be a reaction to drugs so I was taken off it. I could barely walk.