17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I am taking Rifampin and Azithromycin daily. I have enough Rifampin for 8 more days and enough Azith for 5 more days.
My doctor's office called and changed my appt(my doc is having knee surgery) to 14 days from now.
When I asked the receptionist about the meds running out, she said as long as it's not more than 14 days, I should be fine.
I thought I've read that it's not good to stop/start Rifampin. Does anyone here think this is OK or might be a problem?
Thank you!
-------------------- "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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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
With Rifampin, I think the main issue is to NOT pulse it. I read something about serious problems developing if a patient takes it less than 3 days a week, but I can't find the source of the quote (it was drug industry literature, not a Lymenet post). I've stopped for a few days before and not had problems , for whatever that's worth.
They cna't call in a prescription for a short course to tide you over? Don't know where you are in treatment, but stopping antibiotics for a week unintentionally doesn't seem like a great idea just from a progress perspective.
-------------------- Symptom Free!!! Thank you all!!!!
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Maria,
Thank you.
Yes, stopping for 6 days really makes me nervous.
I've decided to call the office and see if they won't call a scrip in for me to hold me over.
This drug and I are soul mates! I love Rifampin!! For the last 11 days, I have felt like myself again with a few little issues.
I haven't felt like myself in 13 months so right now I am very happy and very blessed and I don't want to run out!
-------------------- "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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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Yeah, I'd definitely suggest not stopping if you're just now starting to feel better- not because of the potential for Rifampin 'pulsing problems', but because I wouldn't want to risk losing any gains if I were you.
posted
I didn't know about the no pulsing rifampin rule, and I'm on the same combo right now.
I've been wanting to stop the rifampin due to difficult Herx's, but I'll tough it out until my appointment on Wednesday.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
VERY BAD to stop it, I read all about it when I was memorizing the side effects during my herx!!!
Go to www.drugs.com. Something bad happens like you get low platelets or something if you stop and start it. Seriously.
When I was in Herx Hell from it, I skipped one day. Then for 3 days I dropped back from 600 to 300, but as soon as the herx lightened up a little I went right back to 600. It is very unsafe to stop and start this drug!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
While I am overall happy with my LLMD, I will air my concerns about not receiving any warning or discussion on this point.
In fact, none of the side effects or risks were discussed with me.
Shame on me for not researching it myself. I've been on many abx and my only issue has been Herxing, so I was lax about checking out rifampin before starting.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I think it's just an uncommon problem, and only happens if you try to pulse. meaning- I don't think stopping for a few days or a day here and there causes the problem, from what I've read and experienced myself.
My first LLMD who prescribed Rifampin for me didn't say anything about it either, till I asked if it should be pulsed.
There is often a very limited amount of info that they can convey in a 1-hour appointment, so they do rely on things like you (or a caregiver!) reading the side effects/risks sheet that comes from the pharmacy, or doing the pharmacist consultation that most pharmacists do when you tell them you haven't used a drug before.
There have been some bad stories here about a few rare pharmacists who'll poke their nose in your doctor's business, but for the most part, they're a good secondary 'check' to help catch things that your doctor or their staff may have missed.
-------------------- Symptom Free!!! Thank you all!!!!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Eh....mine didn't tell me a thing either, I am so accustomed to coming home and researching it. I'm on Coumadin and it blocked the absorption of it bigtime, it freaked out my PCP's office. My levels kept going down, down, down....I finally went to drugs.com and found out the Rifampin was blocking the absorption.
Even though I read the information about skipping Rifampin over and over, now I can't find it!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I just called my pharmacist and asked about stopping Rifampin for 6 days until next dr's appt and she said it wouldn't be a problem.
Does anyone (with a title) really know?
Either way, I don't want to stop and I plan on making a fuss until I get a new scrip!
-------------------- "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
Not that I should have to defend my concerns about not receiving clear instructions from my doctor regarding my medication, but...
The appt at which I was Rx'ed the rifampin ended early. It was not a matter of running out of time to discuss the risks.
My LLMD has me pulse all of my other meds, so I do feel a warning about this exception was warranted.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I would definitely call for a script. My kids would start having bart symptoms within about 4 to 6 days of stopping Rifampin, whenever we stopped it to see if they were better.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Anybody want to explain WHY it's bad to stop and start?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
there's an immune reaction of some sort that happens if you pulse (like less than 3 days a week, not the week-long break we're talking about here). It's referred to as a 'flu-like syndrome'.
-------------------- Symptom Free!!! Thank you all!!!!
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