The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Apr 6, 2017.

  1. Steve4Andrea

    Steve4Andrea

    Messages:
    31
    Likes:
    80
    I've got concerns about that, there are multiple postings on PR of disappointing interactions with Montoya's PA's and the Reddit post refers to the PA referring to Sirolimus as an anti inflammatory- Sirolimus does a lot of things but I have not seen it used as an anti inflammatory.

    I am looking at adding Sirolimus to an anti viral protocol and need better confirmation about the interaction, the problem seems to be that Sirolimus is primarily used by transplant Dr.s or Oncologists and they don't seem to have the Infectious Disease background to know how it interacts with anti virals and I haven't been able to find published studies addressing that question.
     
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,322
    Likes:
    19,302
    USA
    Spoiler Alert: Dumb question ahead... but I am still confused if Sirolimus/Rapamune is used predominantly as an anti-viral or for autoimmunity (or possibly for both)?
     
  3. dreampop

    dreampop Senior Member

    Messages:
    128
    Likes:
    328
    Or neither - It's being used because some people have found it works. It has a variety of immune modulating and metabolic modulating properties. Given how many changes a drug like this can make, I really doubt anyone can say why it might work, although people will naturally speculate. It is not used as an antiviral, but there are some research articles discussing it - but in very, very specific situations & viruses. It has a potent immuno supressing nature, so it can go the other way, for instance it made flu viruses worse in one paper.
     
    Gingergrrl likes this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,322
    Likes:
    19,302
    USA
    Thank you @dreampop and I appreciate the info. I have been curious about the mechanism of this drug even though it is not something I will be pursuing for myself.

    Would you say that at present there is not one "sub-group" or patient profile of who might be a responder to Rapamune at this time vs. just guesswork? Or is someone autoimmune (or something else?) more likely to be a responder from anecdotal reports?
     
    Aroa likes this.
  5. dreampop

    dreampop Senior Member

    Messages:
    128
    Likes:
    328
    Honestly, I have no idea.
     
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,322
    Likes:
    19,302
    USA
    No worries! I have just been curious if the responders to Rapamune fit a certain profile (viral, autoimmune, etc) or if they were a mixture and decided to take it by pure random chance, having no idea if they might be a responder.
     
  7. Steve4Andrea

    Steve4Andrea

    Messages:
    31
    Likes:
    80
    We are back on the Raqpamune band wagon, today I started my wife on an every other day dose of 1 mg. Rapamune along with her anti viral Arbidol.

    With the posting of the Montoya clinics use of Rapamune I renewed my investigation into using Rapamune with anti viral therapy and found enough info to become comfortable with the usage.

    First- I understand that all viruses are not the same and all anti virals are not he same so what works for one does not work for all.

    I found several studies focused on HIV that did not rely on a population which had received a prior translpant.

    First is this overview of using Rapamune to treat HIV-

    http://pubmedcentralcanada.ca/pmcc/articles/PMC3014061/

    “Theoretically, it may not seem appropriate to use immunosuppressive drugs in HIV-1 infected individuals. However, RAPA exerted a potent antiviral activity in vitro at concentrations lower than those used to cause immunosuppression. Thus, renal transplant recipients receiving daily doses of 2 and 5 mg RAPA achieved trough concentrations of 4.4 nm and 18.9 nm, respectively [53]. When used alone at 1 nm, RAPA profoundly suppressed the replication of R5 strains of HIV-1 in PBMCs with mild antiproliferative effects on cells [40]. This indicates that RAPA doses lower than those used in transplantation may be effective in HIV-1 patients.”

    This led me to this study which evaluated the effectiveness of low dose Rapamune on various cytokines involved in the treatment of HIV-

    http://www.pnas.org/content/100/18/10411.full

    What is interesting about this study is that they evaluated Rapamune at dosages as low as .005mg/day up to 50mg./day. The results are very promising-

    “These results suggest that low concentrations of RAPA may have a role in both the treatment and prevention of HIV-1 infection. “

    I then found research indicating that Rapamune can be effective at reducing IL-10 levels associated with EBV, it is the IL-10 pathway that we believe Arbidol uses to combat the Coxsackie virus although the IL-10 maybe elevated by another pathway than the EBV.

    http://cancerres.aacrjournals.org/content/63/15/4472.long

    The last study I found was a group of 6 MS patients treated with 2mg./day of Rapamune for 6 months and who had 12 different cytokines monitored before and after. This group was chosen for not having existing infections or prior use of steriods. The end result was a minimal effect on the cytokine levels, the significant changes were all to the positive for fighting viral infections.

    http://iji.sums.ac.ir/article_16665_f83547dab1399dc9fa70a5c78f7fa04a.pdf

    We will monitor her for signs of side effects and if they show up we will reduce the dosage or stop all together.
     
    ErdemX, Aroa and ScottTriGuy like this.
  8. adreno

    adreno Homo neanderthalensis

    Messages:
    4,485
    Likes:
    7,843
    The North
    From your post I get the understanding that low dose rapamune functions more as an antiviral than an immune suppressor?
     
  9. Steve4Andrea

    Steve4Andrea

    Messages:
    31
    Likes:
    80
    I an no expert on Rapamune or most things medical but it appears that Rapamune may be a true immune modulator in lower doses, an immune suppressor in larger doses and an anti tumor agent in even larger doses. I've not come across research showing that Rapamune is "deadly" to a virus in normal concentrations but more that it activates or stimulates some path in the immune system against the virus.

    The MS study indicated to me that without the presence of infection or some other immune stimulant the effects of Rapamune on cytokine levels was very minimal, it only does something if something needs to be done. That fits my idea of what an immune modulator would do.

    As an addendum to my prior post here are two abstracts of studies done by a Chinese group on viral myocarditis caused by Coxsackie B3. I would prefer to see the entire studies but the originals are in Chinese so only the abstracts are available. Again they are looking at immune responses to a viral infection.

    https://www.ncbi.nlm.nih.gov/pubmed/18082048

    https://www.ncbi.nlm.nih.gov/pubmed/19099956
     
    Jesse2233, ScottTriGuy and Aroa like this.

See more popular forum discussions.

Share This Page