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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.
 

hamsterman

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@Hip has done a very thorough write-up on his PEM-Busters/PEM-Shielders thread. https://forums.phoenixrising.me/thr...or-prevent-pem-post-exertional-malaise.48438/

Specifically, just scroll down to the: Corticosteroids as Potent PEM Shielders section.

One thing to remember, is that Corticosteroids are effective as PEM shielders at Immunosuppressant doses (ie 20-25 mg Pred, 80-100 mg Hydrocortisol).

Below that dose, any benefit that is experienced is probably not due to it's anti-inflamatory power, but instead, just from an increase of cortisone, which is a totally different issue.

Also be aware that high doses (Immunosuppressant doses) of Corticosteroids should not be used for long-term as they can very quickly upset the HPA axis, and their continual long-term effects are horrible/dangerous. I use them once a week, and that's it.
 
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Learner1

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Corticosteroids mask other problems and don't fix anything. They set one up for osteoporosis. Hydrocortisone can be taken at replacement doses for adrenal insufficiency, at 10-25ng, nit the large 80-100ng doses you mentioned.

A lot of PEM is caused by oxidative stress. ALA, glutathione, and vitamins A, C, and E can be very helpful. Do can branched chain amino acids, particularly leucine and isoleucine, which are used in mitochondria, are very useful too.

B vitamins, like folate and MB12, Know van, and NAD+ can all have roles, too
 

hamsterman

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Corticosteroids mask other problems and don't fix anything. They set one up for osteoporosis. Hydrocortisone can be taken at replacement doses for adrenal insufficiency, at 10-25ng, nit the large 80-100ng doses you mentioned.

A lot of PEM is caused by oxidative stress. ALA, glutathione, and vitamins A, C, and E can be very helpful. Do can branched chain amino acids, particularly leucine and isoleucine, which are used in mitochondria, are very useful too.

B vitamins, like folate and MB12, Know van, and NAD+ can all have roles, too
I said that 20-25 mg Pred, 80-100 mg Hydrocortisol are for used for immunosuppressive doses. I would never in a million years suggest to use immunosuppressive doses for the purposes of cortisol replacement.

I have nothing against cortisol replacement strategies, but the PEM shielding that @Hip, and many others have referred to here requires immunosuppression.
 
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Well the relationship looks very clear to me.
CFS has issues with immune system (some low, some imbalanced, Some overactive). Steroids lower immune system, So not a good idea long term. I actually feel worst when I do spinal shots! Short term like when I have a colitis flare, and use supossitory is good for my ME (done for couple of days only and like 3 times in a year tops).

If you can lower inflammation naturally, then you get the best of both worlds.
I have seen significant improvement this year by addressing inflammation (I always thought for me was imposible since I always believe mine was coming from inside). I also have colitis which does not help my CFS.

I had to figure out my gut situation and how to lower with the colitis and now I am on great path (I didn't understand that if you have IBS symptom you cannot do insoluble fiber) and that was keeping me inflamed even while eating "right".
 

hamsterman

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Well the relationship looks very clear to me.
CFS has issues with immune system (some low, some imbalanced, Some overactive). Steroids lower immune system, So not a good idea long term. I actually feel worst when I do spinal shots! Short term like when I have a colitis flare, and use supossitory is good for my ME (done for couple of days only and like 3 times in a year tops).

If you can lower inflammation naturally, then you get the best of both worlds.
I have seen significant improvement this year by addressing inflammation (I always thought for me was imposible since I always believe mine was coming from inside). I also have colitis which does not help my CFS.

I had to figure out my gut situation and how to lower with the colitis and now I am on great path (I didn't understand that if you have IBS symptom you cannot do insoluble fiber) and that was keeping me inflamed even while eating "right".
Amen to that. I have Chron's, and have gone through the same thing. When I first told my doctor I was having gut issues, he said, well... you probably have IBS, and need more fiber in your diet.... but when I saw the G.I. and had the colonoscopy, he set me straight. It's been a lot of trial and error, but one thing that's helped me a lot is yogurt.... it's helped a with the gut symptoms, and I think it has helped a bit with the fatigue as well.
 
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Makes sense, as you add more strains, the disbiosis should solve, resulting on eventual balance and remission.
I am working on balancing and adding new strains (I am fermenting my own vegetables, I have a batch on kefir water, Do Kimchi every day, Sourkrout on rotation.... Eventually I will do my own coconut milk kefir, but I am adding things slowly.
 
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This is a trial I did on prednisone about a year ago.
It caused me to think I may not have ME and its some sort of inflammation condition.
I was amazing until I exercised for 2 days in a row, or was it the timing, Ill let you judge.

I still take prednisone when I really really struggle, usually just for 1 or 2 days, Im very wary of it.
Its cruel, I swear I could live on this stuff


Summary:
Significantly better cognition, better mood, better physical strength, better physical recovery, better Heart Rate Variability, better exercise tolerance.


Prior to this
I had a sore/red throat for nearly 2 weeks ( especially at night) and what I now think is brain stem inflammation which takes me horrible places and causes minor but concerning balance issues

Day 1 40mg ( too intense by end of day)
Day 2 0 mg
Day 3 20mg
Day 4 20mg
Day 5 20mg (post exercise inflammation continues for 2 days)
Day 6 20mg
Day 7 20mg


Day 2
Improvements are everywhere

Cognitive capability+++
Better word finding ability, by about double
Typing is faster / more accurate
Mental stamina and ability to keep focussed has increased.
Image processing : Vision=> cognition
eg driving ( can instantly recognise hazzards), easy to find place when looking back and forth between screen/keyboard
Cognition is much quicker, I can answer questions much more rapidly
Much better/faster memory recall of names
Thinking takes a lot less effort and intention

Neurological
Muscle twitching : 1 short episode in sauna, normally fairly constant
Tremor that occurs when moving muscles is still there but not as significant
Balance when walking around in the dark at night is much enhanced
Treadmill at gym ( no balance issues when dismounting)
1 leg balance test 47 secs (LHS) !! ( normally 3-5)
Tinitus (subjective, but seems quieter after exercise where it's usually greater)

Light exercise ( pegging out washing or turning compost) used to be a moderate effort met with high HR ( 100-125) light headedness, fatigue, ectopic beats and easy sweating
All of these symptoms have gone, completely hr 80 after washing line

POSTURAL CHANGES
Standing up from a seated/Lying position often causes temporary lightheadedness
Bending over forwards always caused ectopics and a strong sensation of fluid pulled by gravity around chest/head, now it has gone, completely

Legs
Purple knees: now white and don't change colour when Knees are pressed (no fluid?)
Muscles feel great, predictably they hurt when exercising, but they are not full of fluid,

Wrists
Still sore when bones pressed but 100% freedom of movement
Tendons seem visibly smaller ? certainly not painful at all

Area under ribs/torso
Virtually no pain at all now in torso that was around the ends of the ribs and tissues around back of hips.
can lean back on a chair without the area being sensitive
Sleep: No pain in chest when lying on side

Skin
Blotches on face have cleared (as they do sometimes)
No redness in nose/cheeks

Head
Prickly sensation in back of neck/skull : gone
"Much" more resilience to mental stress

Heart:
I can no longer feel every single beat of my heart through my chest
I seem to have no ectopics
there is no pressure in the middle of my chest when breathing in
Heart rate variability metrics are excellent, best ever sdnn and pnn50

Glands under Jaw
No sensitivity at all,
reduction

SALIVA/MUCOSA
More saliva in mouth especially when exercising /breathing(WHM)
saliva is self generating in times of depletion

Relaxation
HRV is 62 ( normally around 20-25)
Whislt mind is more active and usable , I am much more relaxed
Easy to relax when I breath deeply now.
Whilst breathing and meditation has had a minor effect on HRV, now it's really dramatic. The peaks and troughs on my hrv meter were never possible like this before

Sleep
Shorter ( 5 hrs vs 9-10) but rock solid sleep,
greater deep sleep ( oura ring)
feel refreshed

Exercise
Incredible stamina- Just dont get tired, everything recovers
I can get hot but it doesnt seem to kill me, my functioning does not suffer like it used to.
My chest is free open and light, exercise used to aggrivate it and pressurise it
HR is significantly lower for same exertion
recovery rate is fantastic,
2 min cardio recovery normally 170-125, was 160-96

Sauna
- Heat stress much more tolerable
- Body gets hot but I don't feel it internally
- Doesn't compound my thinking
- Heat does not stress me like it has previously

Urine
Still foamy at times but much less dark,

Bowel/Stomach
Some changes

What hasn't Changed
- Joint soreness in RH ankle in mornings (OA?)
- Bone pain when pressed hard
- Feet still tingle after exercise
- elbow sore after sleep
- some sjogrens type dryness in eyes/nose upon wakening
- minor tendon/ligament pain occasionally


Overall
everything is much much easier, I feel 15 years younger, Nothing hurts, I don't need to budget my energy , I feel fitter, I dont get dizzy, I have massive endurance and resilience, I am much much more capable, I dont feel that horrible fluid that permeates every cell of my being and makes me want to lie down and die.

DAY 5 20mg ( noted change after exercise)
After gym ( 15 min run and 20 min sauna)
Fine, until 9.30 pm
mild heat felt around the ends of ribs
tingling in both knees and feet ( possibly treadmill related)

Day 6 20mg
Woke with sjogrens type dryness
dry bloodshot eyes, lower/slower cognition
hot knees and ankles, back of ribs/kidney area
less memory speed
later in day dull pain on LHS of chest, got worse till 7-8 pm
mood

Day 7 ( NO prednisone)
Woke 4am, hot feet ( tops of metatarsals and tendons) ( better when elevated)
dry eyes, nose
Fluid in bottom of right foot under metatarsals