Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term

[Learner1]

It can be very dangerous for ME/CFS patients to take corticosteroids daily at normal doses for extended periods. Very low doses are OK, but even low doses increase you risk of psychosis.





Do you know any ME/CFS patients who have found huperzine A and eliminated their PEM

Like Mestinon, Huperzine A increases acetylcholine. I'm not aware of that bring behind PEM.

I suspect PEM is much more related to oxidative and/or nitrosative stress. And/or insufficient BCAAs, particularly leucine and isoleucine.

https://www.otsuka.co.jp/en/nutrace...ports-nutrition/essential-nutrients/bcaa.html

 

[Hip]

Like Mestinon, Huperzine A increases acetylcholine. I'm not aware of that bring behind PEM.

I mentioned Mestinon because it has greatly reduced or eliminated the physical-exertion PEM of some ME/CFS patients on this forum. See this post.

The anti-PEM mechanism of Mestinon may not necessarily be related to acetylcholine. Mestinon also has some mitochondrial effects.

 

[Learner1]

Mestinon is complex in its mechanisms and can definitely have negative effects. Well worth understanding the risks in addition to possible benefits, such as:

"Prolonged administration of pyridostigmine (25 mg·kg−1·day−1) leads to neuromuscular impairment, which can persist even when pyridostigmine is discontinued 24 h before assessment of neuromuscular function. Pyridostigmine has the potential to down-regulate acetylcholine receptors, but induces neuromuscular dysfunction even in the absence of receptor changes."

https://pubs.asahq.org/anesthesiolo...nged-Administration-of-Pyridostigmine-Impairs


For those who's like to know more about Mestinon/pyridostigmine, this is an interesting read:

https://www.nap.edu/read/9953/chapter/8#226

 

[Jjnz]

Like Mestinon, Huperzine A increases acetylcholine. I'm not aware of that bring behind PEM.

I suspect PEM is much more related to oxidative and/or nitrosative stress. And/or insufficient BCAAs, particularly leucine and isoleucine.


View attachment 42394
https://www.otsuka.co.jp/en/nutrace...ports-nutrition/essential-nutrients/bcaa.html

I'm 99% certain that leucine causes inflammation (in my case) I have it both in a bcaa suppliment and in a standalone individual container, without fail it causes an uptick in pain around enthesis and costochondritis . Repeated this about 6 times without fail.

 

[Marylib]

A few people have virtually eliminated their PEM using Mestinon, which unlike corticosteroids is something you can take every day. See the PEM busters thread for info.

The med helps me but not a PEM buster, sadly.

 

[Marylib]

@Learner1 . Thanks. Yeah, I follow my usual rule of taking as little as possible of any med. You never know what can go wrong or what can go right. Not to mention the fact that pulsing anything lower dose keeps any med working longer for me. I look at it as being able to fool the 'reset' button for awhile. Or postpone the reset button.

 

[Marylib]

I'm 99% certain that leucine causes inflammation (in my case) I have it both in a bcaa suppliment and in a standalone individual container, without fail it causes an uptick in pain around enthesis and costochondritis . Repeated this about 6 times without fail.

Maybe that's why I like my nutrition in an IV that bypasses digestion. I have spent so much money on oral supplements and oral amino acids ... thud. No change. Nigel Speight and Wm Weir recently wrote an article about the need for education around early nutritional interventions. Before people begin starving to death and their digestion shuts down.

 

[Wishful]

Yeah, I follow my usual rule of taking as little as possible of any med.

Have you tried taking them sublingually? Since my ME seems to be located in my brain, sublingual administration generally reduces the required dosage. 33% for LDN. Obviously it won't work for all drugs/supplements, since some might work on targets elsewhere in the body.

With LDN, I further reduced my intake by observing that the effects lasted somewhere between 24 and 48 hrs, so I could alternate morning and evening doses on alternate days. Would I have had side-effects if I'd continued taking the higher dosage daily? Maybe not, but maybe yes. Minimizing drugs seems safer.

 

[Pyrrhus]

And here's a paper that cautions against using anti-inflammatories in autoimmune disease:


Re-framing the Theory of Autoimmunity in the Era of the Microbiome: Persistent Pathogens, Autoantibodies, and Molecular Mimicry (Proal and Marshall, 2018)
https://forums.phoenixrising.me/threads/why-autoimmunity-probably-doesnt-exist.75795/

Excerpt:

The theory of autoimmunity must be revised to account for the human microbiome. Here, we propose a model in which "autoantibodies" are created in response to chronic, persistent microbiome pathogens. The structural homology (molecular mimicry) between pathogen and host proteins can result in "collateral damage" to surrounding human tissue.

This calls for a paradigm shift in autoimmune disease treatment. Immunosuppressive medications palliate inflammatory symptoms at the expense of microbiome health and balance. In contrast, treatments that support the immune system in autoimmune disease could allow patients to target pathogens at the root of the disease process.

(bolding added for emphasis and spacing added for readability)

 

[Martin aka paused||M.E.]

There is a story about cortisone. I don't remember the details but it goes sth like this:
When medicine discovered cortisone, the scientists administered it long-term to a pianist who was disabled because of rheumatoid arthritis and therefore couldn't play anymore. After the first infusion, she sat down at the piano and played again, weeks, months, then she died.

It's really not a good drug for longer periods. Not in any disease. Cortisone destroys the tissues. It leads to atrophy. Doctors, especially dermatologists, are sometimes crazy with their long-term Rx.

I tried methylprednisolone. 1g/day four days in a row. I felt as if I was cured. The effect lasted for a few weeks in which I took curcumin, luteolin, boswellia etc to conserve the effect. But I crashed. It never worked again. It made me even crash.

I think weakening an already weakened immune system is a very bad idea. Especially in ME/CFS. We have to find other solutions. Understand the pathomechanism and act targeted on the cytokines that are responsible for the inflammatory processes

 

[Learner1]

The body makes cortisol. Having none or an inadequate supply is not good. Replacing what the body is not making while solving the problems that are driving the adrenal suppression can be a valid strategy.

You say you were given methylprednisolone, or SoluMedrol, which is 5 times as strong as hydrocortisone, long acting (I find it wears off in 24 hours vs 4-6 for hydrocodone), and is used as an acute anti-inflammatory. Hydrocortisone is used to replace only what the body is not making not to create an excess

 

[Martin aka paused||M.E.]

The body makes cortisol. Having none or an inadequate supply is not good. Replacing what the body is not making while solving the problems that are driving the adrenal suppression can be a valid strategy.

You say you were given methylprednisolone, or SoluMedrol, which is 5 times as strong as hydrocortisone, long acting (I find it wears off in 24 hours vs 4-6 for hydrocodone), and is used as an acute anti-inflammatory. Hydrocortisone is used to replace only what the body is not making not to create an excess

Yes, of course I meant high dose cortisone therapy. Thought that my post made that clear. Sorry for confusion

 

[Wishful]

I tried methylprednisolone. 1g/day four days in a row. I felt as if I was cured. The effect lasted for a few weeks in which I took curcumin, luteolin, boswellia etc to conserve the effect. But I crashed. It never worked again. It made me even crash.

Same here, with prednisone. Full remission the first trial (1 week?) and the second trial, but never worked after that, even at double the dosage. After the second trial, cumin worked just as well as the prednisone had, but that too stopped working after a week or two. Many years later I discovered that cumin worked well as a PEM blocker, but never did replicate the temporary remission of all symptoms.

 

[Treeman]

think weakening an already weakened immune system is a very bad idea. Especially in ME/CFS. We have to find other solutions. Understand the pathomechanism and act targeted on the cytokines that are responsible for the inflammatory processes

I hear what you're saying. I believe it's possible that my me/CFS is caused by ebv and or shingles. I've been taking valcyclovier for about 3.5 years now and didn't start to improve until then. I have seen slow improvements and I'm open minded to the possibility that in several years my entire cells will have been replaced free of those viruses. Therefore if I took a steroid/anti inflammatory it's possible those considered infections won't over run me. Any thoughts anyone? I've considered other dormant infections could take over.

 

[kewia]

I never tried it long-term.

How long did you take it?

Very low doses are OK, but even low doses increase you risk of psychosis.

Would you count 0.5 mg of dexamethasone as low?

I think weakening an already weakened immune system is a very bad idea. Especially in ME/CFS.

That's very heroic and might be true, but what to do if you don't have another choice?

I've tried Andrographis Paniculata which even shown better anti-inflammatory effects than Dexamethasone, but when I'm taking it, my immune system spiked heavily, worsening my symptoms.

Understand the pathomechanism and act targeted on the cytokines that are responsible for the inflammatory processes

Of course, yes.

 

[kewia]

Anyone here taking dexamethasone, what's your therapy scheme?

 

[Wishful]

How long did you take it?

Prednisone: two trials (1 week each? I forget the details). The second trial was only a few days after the previous one. Then I tried it again, at double the standard dosage, maybe a year later. It had no noticeable effect.

FWIW, after the second trial, I discovered that cumin had the same effect as prednisone ... for a week or two, before it stopped working that way. It is odd: why should two very different chemicals have the same effect on my ME symptoms, including stopping working after a week or two? For all I know, maybe prednisone would have blocked my PEM too, but I hadn't done anything that I would have expected PEM from. Hmm, at that point, I didn't know about ME and PEM.

 

[Learner1]

Anyone here taking dexamethasone, what's your therapy scheme?

I take dexamethasone only after IVIG, during which I get 60mg Solu-Medrol. I take the dexamethasone for brain swelling. The only other thing I've taken it for is for side effects of chemotherapy. It's not something to be taken trivially.

I have 1.5mg dexamethasone capsules which I take 2-3 times in a day, before switching back to hydrocortisone, which I take 10-15mg of, then taper down to 5, then 1 over the next 1-2 days.

For all I know, maybe prednisone would have blocked my PEM too,

Prednisone can suppress the immune system. It can also suppress a lot of symptoms, like inflammation. Might be worth figuring out what's causing the symptoms in the first place and solving that...

This thread might be useful:

https://forums.phoenixrising.me/thr...hort-term-but-may-not-in-the-long-term.80492/

 

[Wishful]

Prednisone can suppress the immune system. It can also suppress a lot of symptoms, like inflammation.

I didn't have any obvious signs of inflammation at that point, and NSAIDs had no effect. Also, I don't think cumin is a particularly strong antiinflammatory, yet it produced the same results as the prednisone, except that the prednisone took 5 days to start working while the cumin took only hours. Thus I think some other mechanism was at work.

 

[Learner1]

I didn't have any obvious signs of inflammation at that point, and NSAIDs had no effect. Also, I don't think cumin is a particularly strong antiinflammatory, yet it produced the same results as the prednisone, except that the prednisone took 5 days to start working while the cumin took only hours. Thus I think some other mechanism was at work.

In general, prednisone is not a desirable approach, for many reasons. Glad cumin works for you. I cook with it.