I couldn't even begin to name the problems it could cause. A LOT of the side effects and dangerous reactions listed were caused SIMPLY because someone wasn't taking the drug CONSISTENTLY.
I read a lot on this board that people suddenly decide to stop their medicine or take it when THEY think they need it and I wanted to remind people that this is very dangerous; Rifampin is NOT like other antibitoics.
There's a reaction realted to this in nearly every category (immunological, hematological, cardiovascular, respiratory, etc.)
So please take this medicine like you're supposed to; otherwise "bad things" could happen.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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BoxerMom
Frequent Contributor (1K+ posts)
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posted
Thanks, little olive.
Good LL docs never pulse Rifampin, for all of these reasons.
I've been told the most frequent side effect of intermittent dosing is thrombocytopenia (low platelets), which would cause bleeding problems.
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Wow, never knew that!!!
Hope my Lyme brain remembers if I ever go on it again.
Thanks for the info.
Posts: 2238 | From East Coast | Registered: Jul 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Thanks Little Olive. I didn't know that. My daughter has been on it for four months now, and her LLMD said that we would do it for at least another two months for bart.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Good to know. I haven't been very consistent with any of my abx lately--stomach bugs, reflux issues, etc.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
You're welcome everyone. We dont need to cause ourselves unnecessary problems when we have all this other stuff going on Posts: 512 | From USA | Registered: Sep 2010
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Little_olive,
I have read a little about rifampin too, and I'm trying to decide how toxic it is to the kidneys. it seems more problematic to the liver.
We have kidney issues, in my opinion, form Bactrim now that I hope will dissipate, But I cannot afford the same toxicity.
What say you?
Thanks
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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quote:There have been rare case reports of REVERSABLE acute renal failure due to glomerulonephritis and renal epithelial cell injury in patients receiving rifampin. Often in these patients OTHER immune-mediated REACTIONS OCCUR, such as hemolysis and thrombocytopenia. Antibodies to rifampin have been identified in some affected patients. Generally these reactions occur after reintroduction of the drug following a lapse in therapy, although they have also been associated with continuous therapy.
Renal side effects have included elevations in BUN and serum uric acid. Hemoglobinuria, hematuria, interstitial nephritis, acute tubular necrosis, renal insufficiency, and acute renal failure have been reported. These events are generally associated with an immune-mediated reaction WHICH OCCURS AFTER INTERRUPTION IN RIFAMPIN THERAPY.
So, just according to that, the risk is more or less associated, again, with interrupting treatment rather than the drug itself.
But I agree that it's more prone to cause side effects in the liver than the kidneys, since it's primarily metabolized by the liver. All you can do is get monitored every few weeks and watch. I get checked every two weeks for abnormal enzymes, then every month if it's a so-far-so-good scenario. (Don't forget up to 15% of it passes unchanged into the urine, so it turns urine orange!)
Also when you get the drug, it comes with an insert that explains the chance of something happening to the kidneys, if you want percentages.
Posts: 512 | From USA | Registered: Sep 2010
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posted
My llmd pulses it. I refused to pulse it. It is the only drug that I refuse to do pulses with. Thanks Little Olive. I will show my llmd. I only was going on what Dr. Stratton at Vanderbilt told me about Chlamydia P which I have too. He told me never, never pulse rifampin because cpn quickly develops resistance if pulsed. I have read countless time of people ramping up this drug too. I would not do that either. We need to get on the same page here with all this bugs, otherwise we are creating stronger and stronger bugs for the next person.
Posts: 433 | From new york | Registered: Dec 2004
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks liitle_olive. I wonder if the unpassed rifampin which turns the urine orange has any detriment.
It sure looks bad, especially when you are treating the kidneys with fine kit gloves.
I think we will wait a few more weeks to start it, or anything, for that matter.
ugh
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
I've been on rifampin for 4 weeks and I only plan on doing two more weeks. Do I have to stop slowly? Does anyone know?
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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lymeinhell
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posted
I was on it 9 mos and had to skip Rifampin for two days every 28 days like clockwork from severe herxing. It gave me just enough time to get through the worst and I always felt much better after the herx than I did before. Meaning, I improved. And I got better, got rid of Bart, and have my life back.
I took large doses (350mg twice a day) of Milk thistle throughout, was also on Flagyl, and not once did I have abnormal liver values.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Little_olive, I think I may have just read an article about what you discovered. It seems to have to do with antibodies that build up against Rifampin.
The person in the study had taken it two years prior.
Does this mean if we took it two weeks 1.5 years ago, we may be at much greater toxicity risk?
OMG
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
cleo: I know LLMDs woudl never purposely ignore the warnings. I think sometimes they deal with so many antibiotics they get confused as to which side effect goes to what. We do need to double check.
And yes, if the side effects of pulsing or randomly stopping and/or skipping doses aren't enough to make someone take it appropriately, it's ALSO the fact that taking Rifampin intermittently allows bacteria to become resistant to it, and very quickly in fact! Bartonella can become resistant to it after just two lapses in therapy!
Lpass: I'm not sure what on earth you're treating with just 6 weeks of Rifampin, but if it's bartonella, you need at LEAST six months on it.
2roads: It might help to understand that Rifampin doesn't literally TURN things orange, but the color of Rifampin is red, so when it gets diluted with other liquids it shows up as orange.
But yes, what you said is true, that some people develop antibodies against Rifampin if they take it for a while, stop it, and then then have to take it again. But I'm not sure for how long that person had to have taken it the first time, to possibly create problems in the future.
I'm not here to incriminate Rifampin, though. We could start a thread on each antibiotic and have outrageous lists of all the things that "could" happen, even though the side effects are generally less than most all the new medications they're coming out with these days for other things like blood pressure and depression. If you NEED the medication, you need it, and the most you can do is monitor for side effects with your doctor until you are off of it.
The way I see it, we have more of a chance (1 in 10) that bartonella will cause endocarditis than of Rifampin causing rare side effects. And 10% of bartonella-induced endocarditis cases are fatal. So!
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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2roads
Frequent Contributor (1K+ posts)
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posted
Thanks for the pep-talk little_olive, I needed it.
Amen to what you said.
Hugs
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
((( )))
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17hens
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posted
quote:Originally posted by lpass: I've been on rifampin for 4 weeks and I only plan on doing two more weeks. Do I have to stop slowly? Does anyone know?
The way I understand it, you should never stop abx slowly. Just cold turkey. Rifampin included.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
does anyone know if it is okay to take the two doses of rifampin at once in the evening or if you have to take it twice a day. I get such terrible headaches that have not resolved since starting this medication almost a month ago. I had been pondering asking my LLMD at our next appt, but when I saw this thread I thought I'd ask. Thanks.
Posts: 47 | From Texas | Registered: Oct 2010
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17hens
Frequent Contributor (1K+ posts)
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posted
Hmmm, well I certainly couldn't say yes or no to that question, not being a medical person...
but I can tell you that when 2 doses of Rifampin were too strong for my DD's stomach (acid), our LLMD had her back down to one dose just once a day in the evening and that worked well for her.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
You can take it once a day. I take 600mg once a day instead of 300mg twice a day. Of course twice a day is best, because the half life is around.. seven hours, I think? But my LLMD said this was fine becuase I herx so severely. Just don't forget to take it at the same time each day.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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posted
little_olive - I've been treating bart with 8 months of zith and was doing pretty well except my head wooziness so my llmd wants me to try 6wks of rifampin to see if it helps. I guess I can potentially take it for a longer time.
17hens - thanks, good to know!
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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posted
Oh! That's much better then! Posts: 512 | From USA | Registered: Sep 2010
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tricia386
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posted
what happens you you stop rifampin bc you are done taking it....just wondering?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
The infection comes back. And since it's bartonella, it comes back very quickly. This event has left me in the ER before, as well, but from a different antibiotic (not Rifampin). Not completely treating the infection meant a HUGE relapse 10 days later.
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