Thank you for the very detailed report @Jjnz !
Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term
- Thread starter Pyrrhus
- Start date
- Tags adalimumab anti-inflammatory cfs corticosteroid dexamethasone etanercept hydrocortisone me/cfs methylprednisolone prednisone
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.
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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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...
-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...
Yes. Hydrocortisone is just the medical term for cortisol. So they're actually the same thing.
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.
Do you think that you may have acquired any new infections due to some immunosuppression from the prednisolone?
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.
Do you think that you may have acquired any new infections due to some immunosuppression from the prednisolone?
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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!).
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!).
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are you still on tinidazole?
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no, I just took 2 gr / one day, that's all. No new bruise up to now 
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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.
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.
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...
Will report back...
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).
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).
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.