Newly diagnosed with RA

Melly

I am petrified. Scrambling around for information and getting tangled in the web. I’ve started methotrexate and just had a second dose. Today I had a tiny spot top of my lip just under my nose and by this evening my whole top lip was swollen. Could this be the start of all the scary side effects. Should I wait and see what happens in 24hrs? The surgery is closed on the weekend.

Poppyjane

Hello @Melly welcome to the online community

You have just had a second dose of MTX and have experienced a swollen lip. You are concerned that it maybe a side effect of the medication. We are not medically qualified to give you advice so may I suggest that you contact your surgery or speak to your local pharmacist for their opinion. Alternately you could ring the NHS Helpline 111, or speak to your Rheumatology nurse /department.

I attach some links which I hope will be helpful

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

https://www.versusarthritis.org/about-arthritis/your-experiences/your-questions-answered/your-questions-on-methotrexate/

Many of our members have taken Methotrexate, myself included, for a number of years and have not had problems with it. Your medical team will be monitoring you with regular blood tests but it might be worth keeping a health diary to record how you progress with the medication for future reference.

I hope you are feeling better this morning and that your swollen lip has calmed down, it may have been a reaction to something you ate and not related to the MTX at all. If you are still concerned and want to speak to our helpline advisors the number is 0800 5200 520.

Do let us know how you get on.

Best wishes

Poppyjane

Ariana

https://community.versusarthritis.org/discussion/60524/newly-diagnosed-with-ra

Hi Melly, I was recently diagnosed with Ra in February and I too was put on methotrexate. I started off with 6 tablets and apart from feeling like I had a bit of a stomach upset and a little fatigue I was okay. Then my dose went up to 8 tablets and I had some blood spotting from my right nostril and a mouth ulcer. I contacted the rheumatology help line, which I suggest you do, and they advised me to stop taking methotrexate for 1 week. After a week I started on 6 tablets and as advised upped my dose of folic acid from 1 tablet, 1 day a week to 3 tablets 3 times a week and this seemed to work for me. However, I only did this for one week then I had to go into hospital for an op, not related to RA, so I stopped all medication 2 weeks before and 2 weeks after the op. I’m beeb back on methotrexate and folic acid for 3 weeks and no blood spotting or ulcers. My. Advice is contact the rheumatology help line and speak to a nurse. Good luck I hope things work out for you.

Loulabelle55

Hi melly when I was first diagnosed with RA they put me on methotrexate it was OK for the first month then my blood tests showed that my liver didn't like it so they changed me to sulfersalazine unfortunately that one didn't agree with me either, but I'm on leflunomide now and have been for a few years with no side effects but it's starting to not work as well as it could and I'm shortly going on biologics. Best to keep in touch with the rheumatology nurses if you're not happy 🙂