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How to cope with transitioning off methotrexate after 10 years??

Hello there, has anyone transitioned off methotrexate successfully? I've been taken off the drug because I was getting a rash and growths, etc. Its been a month, and my body is flaring up. I'm scheduled to go back to the Rheumatologist in 2 months and I am getting scared of the pain... Any advice on what to eat, avoid, etc would be so appreciated

  1. Hi . Your fear of flaring as you come off the methotrexate is certainly understandable. I can tell you that my wife, Kelly Mack (a contributor here), was on methotrexate for a lot of years, but when she was taken off of it she transitioned to a biologic pretty quickly. There still was some transition time until the new med took effect and I recall extra prednisone to help.
    I have to say, I'm a little surprised that you are being taken off without a plan for what is next. Can you write your doctor to ask about what you can do to bridge the gap? Also, could you ask to be put on a cancellation list to, hopefully, get an earlier appointment?
    Concerning foods, what works for one may not for another. That said, there are certain things known to be anti-inflammatory (see: https://rheumatoidarthritis.net/nutrition/top-15-anti-inflammatory-foods and https://rheumatoidarthritis.net/living/summer-foods-reduce-inflammation. Hopefully others will chime in with their thoughts. Wishing you the best and that you can get some relief soon. Please feel free to keep us posted. Richard (Team Member)

  2. Thank you, Richard, that helps. When my Doctor, proclaimed We are going off methotrexate, I was a little shocked and a bit excited. A month in and I'm getting "scratchy", I'm less excited, more frightened! Chronic pain is mood-altering, as I am sure you know. Anywhoo I will check out the food link - thank you, and yes, I will reach out to Dr Bird. I don't want to be a whimp about the pai,n but I know I am getting annoyed. Thanks again.

    1. Hi . It is definitely not wimpy to want to have your disease treated and avoid damage. In general, pain tells us something and in your case there seems to be cause and effect - you stopped the treatment and now the pain is coming. Sometimes it is necessary to change treatments, but taking you off a treatment with no plan in place for what is next is not a strategy and that is one of the prime things we count on doctors for - especially when the pain starts to alter moods and thinking. Please feel free to keep us posted. Best, Richard (Team Member)

  3. Thank you Richard, I reached out to my Dr as suggested and I received an escript last night for prednisone which is comforting I have to say! I‘ve heard it takes 3 months for methotrexate to leave your system so I was surprised it only took 4 weeks for the pain to come back. I must admit I think my brain is coming back which is nice 😬

    1. Hi . Glad to hear the doctor came through with the script for some prednisone to bridge this time period. The three to four months is usually what I've seen in relation to pregnancy/trying to conceive, due to the possibility of birth defects. Medical sites have multiple times for methotrexate to get out of the system in reference to disease effects. I've seen references as low as days to a week, particularly for low doses and for the complete effect to be gone in for to six weeks. So, in some ways it is surprising you didn't notice it before four weeks. I can also tell you that because methotrexate is often actually used in conjunction with biologics, when a switch is made and the methotrexate is discontinued a waiting period really isn't necessary. My wife, Kelly Mack (a contributor here) was an example of this last situation - she simply transitioned from methotrexate to Enbrel. As a side note, she also gets significantly less brain fog being off the methotrexate. Best, Richard (Team Member)

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