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Could high TNF-alpha be causing my symptoms? // Could Humira help?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Jul 28, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    I just found out I have high TNF-a at 58 (reference range is 22). My IL-6 has normalized since starting IVIG, and INF-y has come down from 80 to 7 (reference range 5) but it seems IVIG is not touching TNF-a. My CRP and ESR are normal.

    I'm considering a few next steps that I know are linked to to lowering TNF-a.
    • Increasing LDN
    • Trying Wellbutrin
    • Trying Humira
    I'm especially interested in Humira given its success in treating RA related fatigue.

    Is this logical or might high TNF-a not be causing my symptoms and in fact be a reaction to an infection or just a red herring. FWIW I no longer have any viral-like symptoms, just POTS, low stamina, brain fog, and a general shakiness / feeing of neurological overwhelm. I have no pain.

    I know that Enbrel didn't work out well for Fluge and Mella's four patients. But I don't know if their initial TNF-a levels were high or if Humira was considered. I have read a smattering of anecdotal reports saying Humira helped CFS patients including one person who no longer bothers with doctors and is functionally recovered, but obviously the evidence is sparse.

    I also know there are a lot of natural treatments for lowering TNF-a but I've already tried several, and I don't know how effective others would be.

    Thanks
     
    Last edited: Jul 28, 2017
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  2. lnester7

    lnester7 Seven

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    How long have you been sick?
    My TNF are very low ( lower 25%) been sick for 10y. Started measuring 5y sick and were low then too
     
  3. Jesse2233

    Jesse2233 Senior Member

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    I've been sick for 7.5 months

    Your TNF-a are lower than normal?

    Which lab did you use?
     
  4. halcyon

    halcyon Senior Member

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    I'm betting that TNF alpha could be one of the serum factors that is causing metabolic disturbance in this disease. I don't think blocking it will cause much improvement in symptoms however.
     
  5. ebethc

    ebethc Senior Member

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    Interesting... I just saw an ad for a new naltrexone drug called "Contrave" that could kill 2 birds w 1 drug :) ...2 of the ingredients on your list are combined w this drug:

    • naltrexone, 8mg. This is more than the LDN dosage of 4.5mg, but the dosage varies anyway and 8mg is still a low dose for naltrexone.
    • bupropian, 80mg. (aka wellbutrin)

    You can get LDN custom compounded BUT if you have great insurance & are on a tight budget, it might be way cheaper to this contrave drug... FYI

    https://www.drugs.com/contrave.html

    wow.. i hadn't heard this... does enbrel help w fatigue, too?
     
  6. ebethc

    ebethc Senior Member

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    which natural treatments lower TNF-a?
     
  7. Jesse2233

    Jesse2233 Senior Member

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    Interesting, what makes you say that?

    Also interesting. I'd like to be able to play around with the dosing a bit more, but good to know they're unlikely to have interactions since they're paired in that drug.

    Good list here: https://selfhacked.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    Not sure on that one
     
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  9. halcyon

    halcyon Senior Member

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    TNF alpha can disturb lipid metabolism and induce aerobic glycolysis, like they found in the recent Stanford study. I think things like these are markers that something is wrong but modifying them won't really change the underlying disease much.
     
  10. halcyon

    halcyon Senior Member

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    Do you still experience PEM then? By PEM I mean literally, the flu-like malaise, if you overexert. I don't mean a general worsening of everything when overexerting.
     
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  11. halcyon

    halcyon Senior Member

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    What lab did the test and what are the units for this?
     
  12. Jesse2233

    Jesse2233 Senior Member

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    No, honesty I'm not sure I have except maybe once in the first month. It's either not a feature of whatever I have, or I don't overexert enough to get to that point.

    I do feel a general worsening the few times I go beyond 3000-3500 steps a day, but I wouldn't say it's exactly flu-like in terms of feeling like I have a virus. The only times I feel "ill" in that sense is after IVIG
     
  13. Jesse2233

    Jesse2233 Senior Member

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    ARUP

    Edit: units are pg/ml
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    Hmm but don't we want to induce aerobic glycolysis?

    And do you say it wouldn't change the underlying disease because an enterovirus is potentially still there?
     
  15. halcyon

    halcyon Senior Member

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    The Stanford study showed our (immune) cells are already doing this in excess.
     
  16. Jesse2233

    Jesse2233 Senior Member

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    Hmm must've missed that study. I could've sworn glycolysis was impaired
     
  17. halcyon

    halcyon Senior Member

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    Right, or whatever is triggering an acute phase reactant like TNF alpha to be elevated in the first place. Blocking TNF won't make that go away I don't think.
     
  18. halcyon

    halcyon Senior Member

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  19. Jesse2233

    Jesse2233 Senior Member

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    True, unless high TNF is due to an aberrant immune reaposne that never got switched after the acute phase off and is now causing symtoms.

    Thanks man
     
  20. ljimbo423

    ljimbo423 Senior Member

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