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Came off from Rifampicin today, insomnia !

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Posted 10/19/2019 12:06 AM (GMT 0)
Like the title says. Doctor said to stop Rifampicin today, which I did. I still have active bartonell aI think. And well ... Right now horrible insomnia I just need sleep..... Is this a wirthdrawal symptom or bartonella that just come back ? Maybe I will take rifampicin dosage tonight maybe it will help to fall asleep.... Ugh....

Post Edited (Kiraii) : 10/26/2019 2:45:32 AM (GMT-6)

Posted 10/19/2019 7:31 AM (GMT 0)
Why did he tell you to stop the Rifampin?

How long were you treating Bart and what were you taking with the Rifampin
Posted 10/19/2019 7:55 AM (GMT 0)
Because I upped the dosage it caused extreme fatigue for two weeks, pressure headaches, even more frequent awakenings I made a post on it.
I was on it for several months...
Posted 10/19/2019 8:08 AM (GMT 0)

Kiraii said...
Because I upped the dosage it caused extreme fatigue for two weeks, pressure headaches, even more frequent awakenings I made a post on it.
I was on it for several months...

Why not lower the dose then - instead of stopping it?
Posted 10/19/2019 8:22 AM (GMT 0)
I don't know he said to stop it directly. He was very firm about it.
I'll continue the rifampicin this weekend and call him monday and explain what the hell happened. I hope I can get out of that crap. I remember last time I tried it didn't worked.... Huge insomnia, sleep paralysis, lethargy, bedridden tought I would die...
Posted 10/19/2019 11:15 AM (GMT 0)
Possibly the long-term elevated CYP3A4 from the rifampicin has caused pituitary or adrenal hypertrophy. Have you had your ACTH and cortisol checked?
Posted 10/19/2019 11:32 AM (GMT 0)
@Quin I don't know. But yes I think it has affected my cortisol levels... That's why we stopped. Do you think I need to stop it slowly ? I mean I don't know if my doctor know about the things you mentionned and I don't really know either... I mean I must do it slowly and take care of adrenals ? ;-; Ugh I'm so lost and afraid.
Adrenal hyperthrophy is that Hyperplasia ? Can't find much about it on the internet.

Post Edited (Kiraii) : 10/19/2019 5:40:14 AM (GMT-6)

Posted 10/19/2019 4:36 PM (GMT 0)
Yes, adrenal hyperplasia. What's happening is that the rifampin causes the liver to produce enzymes to get rid of it. These enzymes also destroy cortisol. Due to the prolonged cortisol deficiency, the adrenal glands grow bigger and produce more. Well now you take away the rifampin and the liver enzymes go away, but the adrenal glands are still producing all this extra cortisol.

This should be detectable with a blood test for cortisol, or possibly a MRI to look at the size of the adrenals.
Posted 10/19/2019 4:40 PM (GMT 0)
Oh crap... I hope it's not that..
And can you heal that with herbs ?
I'll go ask this to my doctor, I see him normally monday if I can get up ! Thx for the informations.
Posted 10/19/2019 5:05 PM (GMT 0)
Quin - I hadn’t heard of that - can’t find much on the net to read about it.
Does Rifabutin cause it as well ?


What is the treatment for it? Do the adrenal glands shrink back again after stopping the Rifampin?
Posted 10/19/2019 5:28 PM (GMT 0)

Girlie said...
Quin - I hadn’t heard of that - can’t find much on the net to read about it.
Does Rifabutin cause it as well ?

Yes, although possibly not as much.

Here is one study which compared the effect of rifampin and rifabutin on the metabolism of another drug (lersivirine). The effect of rifabutin was somewhat less, however they used 600 mg rifampin vs 300 mg rifabutin.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3421562/

Girlie said...
What is the treatment for it? Do the adrenal glands shrink back again after stopping the Rifampin?

Usually that would be the case, that the adrenal enlargement resolves over time.
Posted 10/19/2019 5:36 PM (GMT 0)
Rifampicin-induced adrenal crisis in addisonian patients receiving corticosteroid replacement therapy.

https://www.ncbi.nlm.nih.gov/pubmed/6490796/
Posted 10/19/2019 5:44 PM (GMT 0)
“ Here is one study which compared the effect of rifampin and rifabutin on the metabolism of another drug (lersivirine). The effect of rifabutin was somewhat less, however they used 600 mg rifampin vs 300 mg rifabutin.“

That is the usual dose - Rifabutin is half the amount of what you’d take for Rifampin
Posted 10/19/2019 5:56 PM (GMT 0)
Another thing is that some manufacturers think rifampin isn't red enough by itself and actually color the pills with FD&C Red #40. My personal experience is that Red 40 is a potent CYP3A4 inducer too, almost as bad as the rifampin.
Posted 10/19/2019 6:25 PM (GMT 0)

Quin said...
Another thing is that some manufacturers think rifampin isn't red enough by itself and actually color the pills with FD&C Red #40. My personal experience is that Red 40 is a potent CYP3A4 inducer too, almost as bad as the rifampin.

Yup I remember the burnt orange pee.
Rifabutin doesn’t colour the pee like that - I find it does darken it somewhat tho.
Posted 10/19/2019 6:30 PM (GMT 0)
Now knowing all of this I feel like having taking something really bad... It did help with bartonella at the beginning the first months but then seems like nope.
Posted 10/19/2019 6:37 PM (GMT 0)

Kiraii said...
@Quin I don't know. But yes I think it has affected my cortisol levels... That's why we stopped. Do you think I need to stop it slowly ? I mean I don't know if my doctor know about the things you mentionned and I don't really know either... I mean I must do it slowly and take care of adrenals ? ;-; Ugh I'm so lost and afraid.
Adrenal hyperthrophy is that Hyperplasia ? Can't find much about it on the internet.

He can order an ultrasound of your adrenal glands to check them.

I couldn’t find info on acquired adrenal hypertrophy either... lots on congenital tho.

Rifampin is a safe effective medication for Bartonella.

FYI - I’ve not heard of anyone getting that issue with their adrenals - it’s not common...
Posted 10/19/2019 6:39 PM (GMT 0)
Yes, when my doc looked for the side effects he saw that the thing about the adrenal glands was really not common at all ! After all maybe it's not that maybe it is. I'll keep up to date once I get the results ! smile
Posted 10/19/2019 6:41 PM (GMT 0)

Quin said...
Rifampicin-induced adrenal crisis in addisonian patients receiving corticosteroid replacement therapy.

https://www.ncbi.nlm.nih.gov/pubmed/6490796/

“ administered to three patients with primary adrenal failure receiving adequate corticosteroid replacement therapy.“


They already had adrenal failure - Addison’s disease.
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