methotrexate

[Elainecity]

diagnosed with rheumatoid arthritis September 24, on steroids until December24 with the methotrexate now I feel like everything is going wrong, my feet and ankles swell, getting pain in hands and feet, any advice please

[medway-lady]

It might be the steriods are wearing off and the MTX isn’t fully working yet. I’m sorry to say with nearly all RA meds it’s a12/14 week time scale before the full effect is felt. They aren’t like antibiotics and so sadly you might need to be a patient for another few weeks. Steroid's seem like a miracle drug but have serious issues and you could ring and see if another prescription could be issued but if I were you I’d only go down that route if the pain is dreadful.

[helenlw7 in reply to medway-lady]

I’m 20 years since diagnosis, and as a long term steroid user, (now steroid dependent), I would make sure once the methotrexate starts working, you start slowly coming off the steroids. You may be offered another drug alongside the methotrexate.

[zen4]

Hi There I'm afraid I agree There's often a big come down after steroids and meds normally take at least 6 weeks or more to kick in Give it a month if you still have a lot of pain and swelling then get back to the consultant Hope it works out ok Msybe use some anti inflammatory meds to help you out as they work quicker but it's better not to be on them for too long

[wilbertjellyfish]

It depends how long you've been on the methotrexate. If it's longer than three months then you may need to speak to consultant about dose change.

Steroids are great temporarily but I wasn't really advised at the beginning about issues long term and now, 7 years later I'll be on them forever.

Have you spoken to your GP about pain relief...!

Can you get in touch with the rheumatology team and tell them you're not doing well.

It's important to not just try to cope alone, the more fus you make the quicker you'll get better.

Hope someone can help.

[Womble57]

I was started on methotrexate in Jan 24 but by the summer symptoms were getting worse. I had asked about biologic meds initially and was advised to try methotrexate then also added sulfasalazine. Two biologics in and I am almost back to 'normal '. Definitely worth letting rheumatology know that you are open to trying new meds to help improve symptoms. I hope that you get some improvement.

[jacbub103]

Know your pain … call your Rheumatology nurse x

[ABwn]

When I was first put onto mtx at the start of my journey, the specialist also gave me hydroxychloroquine. The 2 together worked very well for a number of years, up until after retirement. Folic acid was also introduced to stop my hair falling out! As a woman didn't fancy the bald look. 🤔 🤣 Possibly if I'd still been a teenager might have been different. Good luck and take care

[cathie]

my GP described steroids as a sticking plaster. That helped me to see what they’re good for and their limitations. Hope you get some relief soon xx

[AgedCrone]

Relax & Speak to your rheumy team…. everybody is different…. they will know which method of dealing with things will help you.

[Mostmoses]

Methotrexate works for many, but not all of us! I had a massive flare-up 8 months after starting it and ended in hospital. Now on a biologic, completely off steroids, and feeling nearly normal. It takes some time (and, unfortunately, pain and trauma) to find what will work for you. Try not to lose heart, but also don't hesitate to ask questions and to advocate for yourself. There aren't any clear blueprints for autoimmune disease and we really have to monitor ourselves quite a bit.

[GordonEdin]

How long have you been on the methotrexate?

It doesn't work instantly and usually the consultant will step up the dose slowly while doing frequent blood tests (to make sure that you are not going to suffer serious side effects from the methotrexate).

It can easily take three months before you see an improvement from methotrexate. In my case I only started to notice a difference after three months and maximum improvement took a couple of years. Still on the pills fifteen years later.

Steroids are not something that you want to be on long term. The initial effect can be wonderful but they do your body a lot of harm if you have to keep taking them for months or years. I had a few steroid injections three or four months apart while waiting for methotrexate. I was told that was about the maximum they wanted to give me.

You can be given anti inflammatories (like Ibuprofen or Naproxen) or things like Co-codamol along with the methotrexate. Better if you don't need them long term (anti-inflammatories are bad for your stomach) but they can help somewhat. Your Rheumatology dept might also give you another steroid injection to keep you going until the methotrexate does start to work. If you are having serious problems then you should contact them.

If the methotrexate doesn't do anything in a few months time - even after stepping up the dose - then your consultant may want to try something else.

[Elainecity in reply to GordonEdin]

Hi, I’ve been on methotrexate for 13 weeks now, felt like it was working but now I’m starting to get more joint pain in hands and feet