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My n=1 with Sirolimus (Rapamune)

Discussion in 'BioMedical ME/CFS Research' started by ScottTriGuy, Nov 28, 2017.

  1. ScottTriGuy

    ScottTriGuy Established Member

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    Yesterday I started Sirolimus, aka Rapamune, aka Rapamyciin. I think I'm probably the first in Canada with ME to take it for ME.

    Its more easily absorbed with a fatty meal so bought some 10% fat vanilla yogurt (so yummy, too bad about the sugar content) to wash the triangular pill down.

    I had taken some of the research and anecdotal reports from that other site to my ME doc. He wanted my HIV doc to confirm that its not contraindicated with my HIV meds. She did, so he did an off-label scrip.

    I should know within 6 weeks if I'm a responder. Trying not to get too excited / hopeful to lessen the disappointment if I'm not a responder...but that's hard when there is so much at stake.

    I contacted Dr Alan Light at U of Utah and will keep him updated on my (non)progress as he's tracking ME folks who try Sirolimus and will make some updates on this thread over the next few weeks.
     
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  2. Helen

    Helen Established Member (Voting Rights)

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  3. Dechi

    Dechi Senior Member (Voting Rights)

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    I really hope it works for you and that you pave the way for other ME sufferers. :)
     
  4. MErmaid

    MErmaid Senior Member (Voting Rights)

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    Great work @ScottTriGuy for going thru the process of getting your hands on the off label Rx! I hope it works for you in a positive way, and if it does, then hope you can continue to gain access to it.

    One step at a time!! Best of luck!!!
     
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  5. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    Thanks for sharing this with us @ScottTriGuy and I hope that you will be a responder. Please keep us posted on your journey.
     
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  6. adreno

    adreno Senior Member (Voting Rights)

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    Excited to follow your updates on this, @ScottTriGuy!

    Has anyone given a shoutout to nandixon from the old place? He had some interesting thoughts on this drug.
     
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  7. ScottTriGuy

    ScottTriGuy Established Member

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    Just sent her a PM over there.
     
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  8. ScottTriGuy

    ScottTriGuy Established Member

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    So today marks 3 weeks since I started Rapamune, 1mg in the morning with a high fat meal for better absorption.

    Immediately I started sleeping better and urinating less in the night.

    The other immediate benefit was the almost complete disappearance of my face and scalp seborrheic dermatitis (SD).

    I still can't lift anything or use my arms for anything substantial (clearing the snow off my car a few days ago made me queasy). I haven't tried walking beyond my limit of 15 minutes, or 2 flights of stairs in a row, so not sure if that aspect has improved.

    Since I've only had slight improvement, this morning I decided to add grapefruit juice to increase my serum levels of Rapamune by about 3 times. I just noticed in the bathroom mirror that my SD has come roaring back and it wasn't like that 5 hours ago so not sure what's up.

    From what others on Rapamune have reported, typically its around the 4 week mark that they felt improvement so I'm still hoping, but not really expecting, to get a bump in a ability.

    FWIW, I'm in the 'mild' category of ME: I'm working full time (at a desk), don't have pain or cognitive fog (beyond my natural dullness), and usually only feel nauseous if I've eaten something like milk chocolate (dark chocolate is ok) or some bread products, so eat low carb.
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I've never heard of this drug, but just googling it made me feel very nervous! Are you being properly supervised by a doctor familiar with Rapamune? Best wishes and take care!
     

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