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

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
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:

Seven7

Seven
Messages
3,444
Location
USA
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
 

halcyon

Senior Member
Messages
2,482
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.
 

ebethc

Senior Member
Messages
1,901
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

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

I'm especially interested in Humira given its success in treating RA related fatigue.

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

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
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.

Interesting, what makes you say that?

  • 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)

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.

which natural treatments lower TNF-a?

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

halcyon

Senior Member
Messages
2,482
Interesting, what makes you say that?
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.
 

halcyon

Senior Member
Messages
2,482
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.
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.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
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.

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
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
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.

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?
 

halcyon

Senior Member
Messages
2,482
And do you say it wouldn't change the underlying disease because an enterovirus is potentially still there?
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.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California