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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 Senior Member (Voting Rights)

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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.
     
  2. Helen

    Helen Senior 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 Guest

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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!!!
     
  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 Senior Member (Voting Rights)

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    Just sent her a PM over there.
     
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  8. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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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.
     
  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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  10. perchance dreamer

    perchance dreamer Established Member (Voting Rights)

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    @ScottTriGuy, I was glad to read of your experience of Rapamune and hope you keep us updated. My doctor is very excited about, and a good many of his patients are on it, but I haven't heard anything about their experiences yet.

    My doctor has people take 5 MG every other day, with D-Chiro-Inositol to complement it on the non-Rapamune days. The D-Chiro is also supposed to help with the immune system. I had thought it was just for PCOS.

    I've had the prescription awhile, but have only taken 2 tablets of it. I had asked the nurse practitioner what time of day to take it, and she suggested the morning, but said the time of day isn't really important. Well, taking it in the morning left me very sedated the rest of the day.

    Scott, what time of day do you take yours? You said it helps your sleep. Do you take it at night?

    The next time I'll try taking it at night. It seems to be a very new protocol in integrative medicine settings, and I'm going to talk to my nutritionist about it next week before taking it again.

    Something I'm wondering about is that my doctor says that this tiny dose of Rapamune every other day does not depress the immune system, but the pharmacist was not sure about this when I asked him. However, the pharmacist just got back from a seminar about using off-label prescriptions in integrative settings, so I'll see if he found out any new information.

    Scott, I see you are from Toronto. I recently visited and blogged about it on Phoenix Rising. What a fantastic city!!!
     
  11. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Sorry, just seeing your posts now - they were written when I was being brain dead on a beach and I somehow missed them.

    @Esther12 No, my doc is not familiar with Rapamune. But finding one who is that would also prescribe off-label for ME seems like a long shot. But I take your point.

    @perchance dreamer I take my Rapamune in the morning, with high fat yogurt to increase absorption. I'd be interested in what your pharmacist learned. My pharmacist has been quite helpful and hooked my up with a group that helped with the cost, but, alas, I did not meet their criteria (coz I'm taking it off label).

    An update:

    I've now been taking Rapamune for just over 7 weeks and have had definite improvements:

    - greatly reduced seborrheic dermatitis (SD) on my face and scalp
    - can walk, on flat ground, at a slowish speed, for up to 30 minutes (was 15 mins)
    - can go up 2 flights of stair in a row (was 1 flight)
    - sleeping better (and remembering my dreams, previously an infrequent occurrence)
    - less night time urinaiton
    - increased tolerance of the cold (I could float in the ocean for about 5 minutes. An impossibility since ME.)

    At 3 weeks I added grapefruit juice to increase serum levels, but within 5 hours my SD came back full force. I continued grapefruit juice for 3 days, then stopped. Another 3 days later SD had cleared up.

    It was about his time that I (and my friends) noticed I could walk farther up hill before needing to stop. So I intentionally over walked to try to induce PEM and see where my new ceiling was: I walked for an hour at a regular healthy person pace (not power walking, just a regular pace).

    A couple of hours later PEM symptoms began to appear, but less intense and for shorter duration. Previously, with that kind of effort, I would have have needed at least 4 or 5 days to recover and feeling much worse during that time. As it was, it only took 2 days before I returned to my new normal.

    I got the flu in early January and SD came back. Then, when I was just over those 4 flu days, I had an intense reaction to something I ate (fructans?) that gave me intense vertigo for most of one day. Between those 2 health challenges, it took a week for the SD to clear up.

    We had a very light and fluffy snow fall last week and I was able to push the shovel to clear the snow off the sidewalk, so that's definitely an improvement. I'm not able to actually shovel snow though. And just scrapping a thin layer of frost of the windshield makes me queasy for a few minutes.

    In the last week I've had 2 small mouth ulcers lasting about 48 hours. Other than that, no other noticeable side effects.

    I am taking 1mg a day. It is expensive, over $500 CAD for 6 weeks. I am mild and working full time.

    I've got another 5 weeks of my current supply, so will see if improvements still come, or it I plateau, or it gains disappear.
     
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  12. MeSci

    MeSci Senior Member (Voting Rights)

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    Have you seen this?

    "Grapefruit Juice
    Because grapefruit juice inhibits the CYP3A4-mediated metabolism of sirolimus, it must not be taken with or be used for dilution of Rapamune [see DOSAGE AND ADMINISTRATION, DRUG INTERACTIONS, CLINICAL PHARMACOLOGY]."

    https://www.rxlist.com/rapamune-drug.htm
     
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  13. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    @perchance dreamer I have been updating Dr Alan Light at U of Utah about my Rapamune experience as he is tracking ME patients that are trying it. I told him that your doctor was prescribing and he is interested in connecting with your doctor. May I PM you with Dr Light's email so you can pass it along to your doctor with the request that he contact Dr Light?

    From what I understand, grapefruit juice increases the serum levels of Sirolimus, so it was a way for me to increase the dose without the cost. I got this info from @Hip on PR on the Sirolimus thread.
     
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