Alternative to methotrexate

Lakeslady
Lakeslady Member Posts: 2
edited 23. Mar 2025, 09:53 in Coffee Lounge

I was diagnosed with RA 3 years ago and given prednisone and hydroxychloroquineThis.helped the pain and inflammation, but I then had 2 hip replacement surgery and was prescribed methotrexate which I have taken for 2 1/2 years.
I begged for an alternative treatment and was told I must keep taking methotrexate. I considered it was poisoning me .
I have recently been diagnosed with interstitial lung disease, and have lung scarring, and breathlessness.

After a CT scan and Pet scan I am told that there is a likelihood of cancer .

I luckily saw a respiratory consultant who instructed me to stop the methotrexate and prescribed prednisone 30 mg daily. After 3 days all symptoms disappeared and I felt well and active regained appetite, sleeping well, feeling great .

However I have to reduce prednisone over 2 months and need Rhumatology prescription.

I failed the test for biological as I was too well

And had no swelling in joints. I need an alternative to methotrexate and wonder if anyone has any suggestions?

Comments

  • Arthuritis
    Arthuritis Member Posts: 512

    @Lakeslady Given your proven medical history with the lung issue, rheumatology should offer you something different. Was the test for biologics that found you “too well”, conducted while you were on prednisone, which would of course mask the symptoms.

    Sadly steroids for immune damping have their own serious problems so you can’t stay on them for long.

    Biologics & biosimilars are both very expensive (Big pharma’s cash cow/golden goose), and they can make you extra vulnerable as their immune damping is even more potent, and they require more effort (ie cost) to run.

    Did your symptoms only appear 3 years ago when you were diagnosed?

    I was diagnosed in July 2021, on 20mg MTX by Nov 2021, this was upped to 25mg in july 2022 following a huge flare up after eating a single slice of baked beans on toast. (Not had problems with toast before). In March 2023 I had shingles and bacterial infections brought on by my immunity being so damped down. However while being treated for these i had to stop taking MTX in March. Interestingly at the end of the treatment for these, I found I didn’t need MTX anymore. In May 2023 my rheumy did all the tests to confirm and stopped prescribing MTX. I had nearly 2 years of being RA symptom & drug free, even started going to the gym. Then in Jan I had a protein drink made with what i guess was raw soy bean, and the very next day felt something was wrong. By early Feb I had to go back on MTX. It’s miserable, everyone is different but you have to be your own advocate and ready to challenge & ask questions.

    Here are some links that might help you.

    ZOE

    https://podcasts.apple.com/gb/podcast/zoe-science-nutrition/id1611216298?i=1000696532853


    leaky gut UCL research


    https://www.ucl.ac.uk/news/2021/sep/targeting-gut-relieve-rheumatoid-arthritis


    sfed


    https://londoncfm.co.uk/what-is-the-aip-diet-autoimmune-protocol-diet/

    Hope this helps.

  • Arthuritis
    Arthuritis Member Posts: 512

    @Lakeslady Here is some reading on alternatives , although in my opinion if MTX works for you, it’s the least objectionable, however we are all different and the only sure way to know is to try.

    https://versusarthritis.org/about-arthritis/treatments/drugs/etanercept/