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All of my life I have been unable to take full doses of any medication because I am so utterly sensitive to absolutely everything. For example: if I need some deep sleep 6.25 mg of Benadryl knocks me out for 9 hours. (For those of you keeping track that is 1/4 of a pill for 9 hours of uninterrupted sleep.) Ampligen and I could only coexist at 50 mg.  I believe I have mentioned before how I have all of my doctors trained – they know to look up toddler-sized doses and they pick pills that are choppable. Until now.  Apparently my rheumatologist has found one unyielding component of me that requires maximum doses in a triple combination. My immune system. Who knew? I certainly didn’t. I always thought I was sickly. And I am, but in a different manner than I thought. Even though I catch colds and flus, (and everything else I come into contact with) and though I have fevers and a sore throat daily  my immune system is not weak. Just misguided. It is guiding the best and the biggest immune missiles it can at me. Why worry about a cold when there are so many other problems? Perhaps my immune system has some repressed component of self-loathing.  To make a long story short if the strength of The Avengers team could be combined, quantified and then transferred into an immune system – that immune system would be mine.

While there has been a few cases that I have read about where ME/CFS has been vastly helped by Methotrexate I have not found this to be the case with me. So far I have seen good improvement in pain reduction, inflammation reduction and in energy boost, but since my current baseline is somewhere between “shoot me now” and “don’t waste a bullet I’ll be dead by morning” a good improvement has only moved me to the category of struggling which – to quote one of my favorite films – is “like trying only without succeeding.” I usually have a pain reduction / energy boost which lasts about 3 days after the MTX injection.

To try to move me further along the path to health Mr. Rheumy has now added in 20 mg of Arava daily. Arava (as I have recently learned through Dr. Google) is an immunomodulatory drug with anti-inflammatory properties. If this triple combination of Plaquenil, Methotrexate and Arava fails to slow down the war within me – then biologics will be the next step.  Until then – immune system Avengers Assemble!  Or, rather – disperse! And bring me some Shawarma!

 

Sophie

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