Increasing methotrexate dose

Hi Everyone,

My best wishes to you all. Just hoping to hear something positive! I recently put my dose up from 15mg to 20mg. (15 mg was not working) Is there anyone out there who has seen an improvement with a methotrexate dose increase? I would like to hear your stories (positive or not so!) I feel isolated at the moment (Hardly surprising as I have covid and I'm isolating!) but I mean from an RA point of view. There seems to be no provision for people to ask questions of the nurses and doctors. It is - go away, take these drugs. They might work, they might not, come back in 6 months. Obviously I understand that the NHS is under pressure but that doesn't make the lack of contact any easier to deal with.

I hope you are able to enjoy the removal of restrictions. Hopefully I can soon!

Best wishes,

Emma

Comments

  • Grace111
    Grace111 Member Posts: 20

    Hi @Emma126

    I took Methotrexate for years and like you I had to increase my dose to 20mgs and it worked really well for years. Later I just felt so sick on it and I lost my faith in it. Eventually my consultant put me on an Anti TNF treatment instead. Fingers crossed it works for you. Like you I did feel like it was such a long time between trying new treatments and I had a young baby at the time so I felt like I was missing out on precious time with her when I wanted to feel well. We got through it though.

    Grace111

  • Emma126
    Emma126 Member Posts: 14

    Hi Grace,

    Thank you so much for replying to me. I hope you don't mind me asking but I have never had the opportunity to speak to someone who has had experience of taking methotrexate before now - once you were on the right dose how long did it take to start working? Once it was working, did you still have symptoms?

    I hope your current treatment is working well?

    Best wishes,

    Emma.

  • Grace111
    Grace111 Member Posts: 20

    Hi @Emma126

    Ask away, happy to share 😊 I think it was about 10 weeks before I had the full effect but it didn't deal with all the symptoms, but it did lessen them considerably. I then had another drug added to the mix plus an anti-inflammatory. This made a lot of difference for quite a few years. Then about 10 years later I have another really bad flare and was started on an anti TNF treatment. I am now on Benipali which works really well.

    My advice would be keep asking, keep a record of your bad days and don't be afraid to nag politely when things are not working for you. Also we are here all the time so don't feel isolated about your arthritis. Hope you can get out and about soon

    Grace111

  • Emma126
    Emma126 Member Posts: 14

    Hi Grace,

    Thank you very much. That's very interesting and helpful. I will try to follow your advice! I find it difficult to 'nag' as the nurses don't seem to want to engage. They don't like you to ask questions and I feel like they think I am wasting their time! I will try again next time I get to have a conversation with one of them.

    Thanks again Grace. Hopefully I can chat to you again some time!

    Emma

  • Mike
    Mike Member Posts: 11

    Hi Emma

    i have recently increased my methotrexate from 20mg to 25 and have now started to notice an improvement

    all my blood tests have stayed absolutely fine and I’m glad I had dose increased

    Methatrexate is really not as scary as some think and I have quite a bit of faith it has certainly helped me

    good luck

    mike

  • sunnysideup
    sunnysideup Member Posts: 17

    Hi Emma

    I'm on Methotrexate (10mg - this was reduced a while ago due to nausea) and Benepali (I inject both). I recently had a spell off the meds (due to blood tests) and experienced a flare up for some weeks. I'm back on them now and my hands are much better again - by which I mean manageable so I can do stuff again including play my guitar after a fashion. I've been on Mthtxt since I was diagnosed about twelve years ago and, although I have swollen joints in my fingers, it's kept the disease from getting worse.

    Hope by now you're feeling better from the Covid Emma. Best of luck!

  • Emma126
    Emma126 Member Posts: 14

    Hi Mike and Sunnysideup!

    Thanks for your comments! Sorry for replying slowly - I had only just seen them! It was good to hear about your experiences. I hope your meds continue to work well for you. I'm still not sure whether mine are having any effect yet,

    All the best,

    Emma