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

Pyrrhus

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Over the years, we have seen multiple reports that strong anti-inflammatory treatment reduces ME symptoms in the short-term, but may worsen ME in the long-term.

Most of this evidence has come from patient anecdotes regarding corticosteroids/hydrocortisone/prednisone/Methylprednisolone/dexamethasone, etanercept/Enbrel, adalimumab/Humira, etc. Note that I am only referring to pure anti-inflammatory drugs here, not to supplements that have an anti-inflammatory component.

I thought it would be good to start a thread to collect the evidence for both short-term and long-term effects of pure anti-inflammatory drugs. Please feel free to share your experience here.

There isn't much that I can find in the literature regarding these drugs in ME, but:

1) At the AACFS Seattle conference in 2001, Lambrecht reported on a pilot study using etanercept in 6 CFS patients. At the end of the 8-week trial, there were significant reductions in fatigue, muscle pain, headache, and lymph node pain. Exercise tolerance was improved. Unfortunately, this wasn't published and there was no follow-up to see if the patients worsened after that.

2) A 1999 British study looked at hydrocortisone and reported that "in some patients with chronic fatigue syndrome, low-dose hydrocortisone reduces fatigue levels in the short term. Treatment for a longer time and follow-up studies are needed to find out whether this effect could be clinically useful."
https://pubmed.ncbi.nlm.nih.gov/9989716/

3) A 1998 American study also looked at hydrocortisone and reported that "Although hydrocortisone treatment was associated with some improvement in symptoms of CFS, the degree of adrenal suppression precludes its practical use for CFS."
https://jamanetwork.com/journals/jama/fullarticle/188004
 
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Wishful

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Prednisone worked excellently for me, briefly. It gave me full remission the first two times I tried it, but the remission passed after I tapered off. I tried it twice later, the second time at double the dosage, with no effect. I never tried it long-term.
 

Learner1

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Steroids are not a cure it treatmrny for ME/CFS. They are useful for specific problems.

Hydrocortisone has been helpful for replacing cortisol that my adrenals aren't making. As I've improved I need less.

Long acting SoluMedrol reduces brain inflammation due to IVIG. Dexamethasone is helpful for 1-2 days.

Curcumin is helpful as an antioxidant, COX-2 inhibitor, etc.

Boswellia is helpful for brain inflammation.

NSAIDS are hard on gut, liver, and mitochondria.
 

Hip

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Over the years, we have seen multiple reports that strong anti-inflammatory treatment reduces ME symptoms in the short-term, but may worsen ME in the long-term.
Yes, it is intriguing, and I've always wondered why this phenomenon has not been further explored in studies.

I suspect the phenomenon could be used to help demonstrate a viral pathology behind ME/CFS; because normally taking corticosteroids for one or two months does not produce any problems in other chronic diseases, as far as I am aware. And indeed some chronic diseases are treated with long-term corticosteroids.

But in ME/CFS, anecdotally, taking corticosteroids for even just a few weeks can be enough to cause a major worsening of ME/CFS. So that in itself must mean something; and it could be because it allows underlying infections to grow.

Dr Chia recounts a story of two ME/CFS patients who took prednisone daily for two weeks and improved remarkably; but when they tapered off, they got much worse, and actually ended up in the hospital. He believes such extended use of corticosteroids allows enterovirus to proliferate.
 
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Pyrrhus

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Hydrocortisone has been helpful for replacing cortisol that my adrenals aren't making. As I've improved I need less.
Good point. What is your current dosage?

Long acting SoluMedrol reduces brain inflammation due to IVIG. Dexamethasone is helpful for 1-2 days.
Interesting. How often do you get brain inflammation after IVIG treatment?

I suspect the phenomenon could be used help demonstrate a viral pathology behind ME/CFS
But in ME/CFS, anecdotally, taking corticosteroids for even just a few weeks can be enough to cause a major worsening of ME/CFS. So that in itself must mean something; and it could be because it allows underlying infections to grow
Yes, this phenomenon is indeed consistent with a persistent infection hypothesis. I wonder what it might mean for an autoimmune hypothesis?

I 'm doing well under methylprednisolone treatment, up to now it was my best helper.
Yes, I believe you have mentioned elsewhere that you find it very helpful for small fiber neuropathy. How long have you taken it for, and at what dosage? Have you ever felt that either the effects wear off or you experience some worsening?
 

Hip

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I wonder what it might mean for an autoimmune hypothesis?
That's a good point. I believe corticosteroids are used long term for lupus, and autoimmune disease, but I am not aware of any adverse effects arising when stopping these drugs.
 

pattismith

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Yes, I believe you have mentioned elsewhere that you find it very helpful for small fiber neuropathy. How long have you taken it for, and at what dosage? Have you ever felt that either the effects wear off or you experience some worsening?
Difficult to say because I would have to read my records. I already documented my start with MPred on PR.
I tried to stop MPred during the covid crisis and yes my symptoms came back, including cardiac arrhythmia, but I'm not sure if it was worse than initially or just the same.
I had to go back on MP after a few weeks break. I improved again and my arrhythmia disappeared.
I tapered down to 8 mg every other day but had to go back on 16 mg because I feel some adrenaline rushes in my chest.
 

Learner1

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Good point. What is your current dosage
2.5mg. I was on 25mg for a couple of years, then reduced to 20, then 10, then 5, then 2.5mg as my adrenals started working better.

Interesting. How often do you get brain inflammation after IVIG treatment?
Like clockwork, every time I get IVIG.

The rest of the time these days, on my brain works just fine with no brain fog or inflammation, which is a big change from where it was 3 years ago.
 
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Question on NSAIDs for anyone?

I just took an ibuprofen midafternoon two days in a row (for jaw inflammation that came on).

So oddly- for the past two mornings, I've had almost ZERO of my normal morning bloating and cramping and discomfort which typically goes on for several hours every day during: bowel activity window.

But NSAIDS- are supposed to be bad for the intestines...so I;m wondering what this. might be an indicator of or if this- suggests something.

I feel like whatever my problems are, they are late in the digestive cycle and lower colon. Everything seems fine- until that last dramatic section of- the gut.
 

Learner1

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NSAIDs can kill certain gut bacteria. This can be indiscriminately, so not a recommended gut treatment.

You might look into a Viome test, which I've found helpful in working on my gut.

NSAIDs have risks that are generally not worth the benefit. I find that Designs for Health CurcumEvail or Thorne Boswellia are great for most forms of inflammation.