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

kelly8

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So I have used hydrocortisone for the last 3-4 years. I believe my specialist used it as support for my adrenals not really as a immune suppressor or anti inflammatory. Basically he wanted to start working on my gut first but I kept showing up to my appointments falling asleep in the waiting room. I was falling asleep driving my car with an infant. My primary care at the time did jack sh*t which was ridiculous.
My specialist decided to work on the gut and do the hydrocortisone at the same time.

My specialist took one look at me after I had come in twice and put me on hydrocortisone and suddenly I could function like a normal human again. I had trouble with the dosing for a while. I kept having flare ups and couldn't quite figure out how to stop them before they got bad. I just started IVIG and after the first treatment I was able to cut my dose in half to 2.5mg. At the highest I was on probably 15mg daily. Hopefully this info helps! Like I said it wasn't a magic pill but it definitely was a game changer for my quality of life.
 
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So I have used hydrocortisone for the last 3-4 years. I believe my specialist used it as support for my adrenals not really as a immune suppressor or anti inflammatory. Basically he wanted to start working on my gut first but I kept showing up to my appointments falling asleep in the waiting room. I was falling asleep driving my car with an infant. My primary care at the time did jack sh*t which was ridiculous.
My specialist decided to work on the gut and do the hydrocortisone at the same time.

My specialist took one look at me after I had come in twice and put me on hydrocortisone and suddenly I could function like a normal human again. I had trouble with the dosing for a while. I kept having flare ups and couldn't quite figure out how to stop them before they got bad. I just started IVIG and after the first treatment I was able to cut my dose in half to 2.5mg. At the highest I was on probably 15mg daily. Hopefully this info helps! Like I said it wasn't a magic pill but it definitely was a game changer for my quality of life.
Raises 2 questions :
Does hydrocortisone raise serum levels of cortisol.
And do me/cfs people have a dulled response to cortisol. My cortisol (2 tests) is normal, but perhaps my response to it (after various stressors) might be dulled.
 

pattismith

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after months taking Prednisolone and/or Methylprednisolone, I got bad things showing up...
-urinary problems with some strange things in my urine
-strange bruises on my legs that are very long to resolve

I took 2 g of Tinidazole 6 days ago and urinary symptoms immediately resolved.
I also notice that no new bruise appeared and old ones seems to resolve quicker than previously

Tinidazole is efficient against protozoa and anaerobic bacteria (most anaerobic bacteria are in the gut or the genital tract or the mouth), so I wonder if I have any latent infectious/parasitic problem that may be a trigger for my CFS/ME...
 

Pyrrhus

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Does hydrocortisone raise serum levels of cortisol.
Yes. Hydrocortisone is just the medical term for cortisol. So they're actually the same thing.

And do me/cfs people have a dulled response to cortisol. My cortisol (2 tests) is normal, but perhaps my response to it (after various stressors) might be dulled.
I have never heard of a dulled response to cortisol in ME patients, but it may be possible. Remember that cortisol levels change during the day. In a healthy person they are highest right before waking up, and then decline during the day. Many ME patients exhibit a different daily pattern of cortisol, although the total amount of cortisol in a day may be normal.

I took 2 g of Tinidazole 6 days ago and urinary symptoms immediately resolved.
I also notice that no new bruise appeared and old ones seems to resolve quicker than previously

Tinidazole is efficient against protozoa and anaerobic bacteria (most anaerobic bacteria are in the gut or the genital tract or the mouth), so I wonder if I have any latent infectious/parasitic problem that may be a trigger for my CFS/ME...
Do you think that you may have acquired any new infections due to some immunosuppression from the prednisolone?
 

pattismith

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Do you think that you may have acquired any new infections due to some immunosuppression from the prednisolone?
I think something latent in my body showed up and flared with the immunosuppression I induced with corticosteroids. I think it's a bacteria or a protozoa, because it seems sensitive to tinidazole.
When I took 2 g Tinidazole, I spent three bad days with head pain form the drug, followed by one perfect day where I felt .... normal...(feeling normal is not normal for any ME/CFS patient!).
 

ChookityPop

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I think something latent in my body showed up and flared with the immunosuppression I induced with corticosteroids. I think it's a bacteria or a protozoa, because it seems sensitive to tinidazole.
When I took 2 g Tinidazole, I spent three bad days with head pain form the drug, followed by one perfect day where I felt .... normal...(feeling normal is not normal for any ME/CFS patient!).
are you still on tinidazole?
 
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NSAIDS are hard on gut, liver, and mitochondria.
I took several ibuprofin over the course of a week (4)...and it had an immediate affect of substantially reducing my IBS.

I don't plan on taking it long term, yet wonder if: I should continue to take one every few days.

The first one I took because I got some glycine, and took 2 (500 mgs each) before I went to bed. They gave me a really bad headache...a version I don't normally have.

Now I'm afraid of the glycine.
 
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After reading the entries here, I am mot sure if my improved feelings (stamina, burning, aches) is not because of starting LDN but because I took prednisone as immunosuppressant for my suspected drug reaction to nurtec (all over body itchy raised rashes since 7 days ago). I am on day 3 of 7 day course of prednisone, while on day 2 of LDN.

Will report back...
 
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I was asked to share my experience here.

I tried high dose methylprednisolone 160mg for 10 days and it gave me flu like symptoms and made my pots worse (and other symptoms related to dysautonomia i assume, like making my vision more blurry and had more frequent palpitations). It also give me tingling in the extremities while exhaling. I felt like it was making me all around worse and had no benefit (aside from the psoriasis improving) so i stopped it quickly.

I also tried various microglia inhibitors (LDN, boswelia, homotaurin, Palmitoylethanolamide +Luteolin and maybe others i dont remember) and they all gave me flu like symptoms (aside from LDN which didn't give me flu like symptoms but i still felt overall sicker).

I also tried local anti inflammatories for the gut (budesonide, mesalazine) and those didn't give me any change (good or bad).
 
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After reading the entries here, I am mot sure if my improved feelings (stamina, burning, aches) is not because of starting LDN but because I took prednisone as immunosuppressant for my suspected drug reaction to nurtec (all over body itchy raised rashes since 7 days ago). I am on day 3 of 7 day course of prednisone, while on day 2 of LDN.

Will report back...
Okay, it was the prednisone that made me feel great. I had a second round of prednisone not too long ago and was able to replicate the great daytime feelings but again with even more sleeplessness and increased appetite.
 

Marylib

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This is the first I have heard of about a PEM shield. I'm having a hard time contextualizing this information in this thread about steroids and NSAIDS. @Hip is there a link to the discussion about a PEM shield through using prednisone? (I may not be understanding this correctly.) I have a family member (not genetically related) with RA so I am familiar with what she has gone through. Ultimately her doc took her off prednisone and she had a terrible time recuperating - she suffered depression, etc. As for me, I feel that a course of prednisone to treat laryngitis (before the cascade of viral infections that induced first FM and then ultimately ME) did me no favors and may have contributed to throwing my immune system off balance.
 

Hip

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@Hip is there a link to the discussion about a PEM shield through using prednisone?
Yes, the discussion has been summarized in the corticosteroids section of this long post at the beginning of the PEM Busters thread.

Basically, a severe bedbound ME/CFS patient found that a one-off normal dose of corticosteroids allowed him to do a full gym workout once weekly with no PEM repercussions at all.

However, daily use of normal dose corticosteroids can make ME/CFS patients much worse in a matter of weeks, due I suspect to their immune suppression which may make underlying viruses proliferate. So this use of a single dose of corticosteroids to prevent PEM may be OK once a week, but not every day.
 

Marylib

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@Hip thanks. I didn't know that thread existed. Very helpful. And I suspect the same thing about corticosteroids. I do know some people who use them just to attend a special event. I prefer methylphenidate (low dose on occasion only) because I am familiar with the effects. The day an accessible true and lasting PEM buster is found will be a cause for this forum to go happily out of business! :)
 

Learner1

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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.
One can take hydrocortisone every day. Mestinon had allergens so many of us can't take it. It's also prescription only, making it out of reach for many. Huperzine A works better, without alleegend and with fewer side effects. Even so, many of us are also on beta blockers or other drugs.
And I suspect the same thing about corticosteroids. I do know some people who use them just to attend a special event. I prefer methylphenidate (low dose on occasion only) because I am familiar with the effects.
It might be helpful to do a 24 hour saliva or urine cortisol test. If it's low early in the day to late afternoon, then hydrocortisone might be helpful. A replacement dose is around 25mg, which can be taken in multiple smaller doses throughout the day to provide the function that someone with normal cortisol would have.

Not so sure this is wise:

Inhibition of mitochondrial respiratory chain in the brain of adult rats after acute and chronic administration of methylphenidate
Ana O Fagundes et al.
Neurochem Res. 2010 Mar.

Abstract
Methylphenidate (MPH) is frequently prescribed for the treatment of attention deficit/hyperactivity disorder. It was previously demonstrated that MPH altered brain metabolic activity. Most cell energy is obtained through oxidative phosphorylation, in the mitochondrial respiratory chain. However, there are still few studies about MPH effects on the brain of adult rats. Thus, in the present study we evaluated the effect of acute or chronic administration of MPH on the activities of mitochondrial respiratory chain complexes I-IV in the brain of adult rats. For acute administration, a single injection of MPH was given to 60-day-old rats. For chronic administration, MPH injections were given to 60-day-old rats once daily for 28 days.

Our results showed that complexes I, II, III and IV were inhibited after acute or chronic MPH administration in the hippocampus, prefrontal cortex, striatum and cerebral cortex. On the other hand, cerebellum was not affected.
 

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Hip

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One can take hydrocortisone every day.
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.



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