Topic: Rifampin users - what was your experience? Pls help.
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I am pulsing Rifampin M, W, F. And really feeling it.
Would like to see if my symptoms are in line with others' experiences when starting Rifampin.
My only other experience with Rifampin (a year ago) ended badly - with a hospital visit. We are hoping that by pulsing, it will be more manageable for my body to detox.
That experience, LLMD believes, was not a herx but a detox issue.
So I'd like to compare notes with those of you who may have had a herx on Rifampin, to make sure I'm still within the realm of "herx" and not heading into another crisis.
Thus far - I'm experiencing a headache beyond compare, nausea, electric feeling throughout body, heavy chest sensation, and general flu-like feelings.
Does this seem like the norm, in Rifampin treatment?
Thanks, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
I just started Rifampin last week, orally. I am
having the exact same symptoms, even the strange
chest sensation, as well as horrible air hunger.
I hope this time you do well on it!
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks for sharing your experience, txgirl. It's good to know I'm on target, in some ways.
This is my first time on abx in quite some time, and I've forgotten what a herx feels like.
Unfortunately, it's all coming back to me now!
If anyone else would be up for sharing their experience, it would be appreciated.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
Rifampin made me feel more "wired" and moody. It also made me less able to tolerate going more than a few hours without eating. Something with blood sugar regulation. Rifampin interacts with a lot of drugs and hormones, so you may need to watch your adrenal and thyroid hormones while on it and adjust doses.
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Oh, Lymetoo, that headache sounds horrible.
It's so hard to tell if this headache is just my "normal" horrendous headache that appears frequently (the reason I'm on Rifampin again) or if it's a result of the meds - whether side effect or herx.
Maybe I will email the LLMD to double check.
And thank you, asus, for the heads up on adrenal and thyroid meds - I am on both. Didn't know that Rifampin can play havoc with the dosing. Excellent info.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I also had terrible headaches, dizziness, and nausea when I started Rifampin.
Taking it with food helped make the symptoms more tolerable. I was eventually able to take it with less food then on an empty stomach (after about a month).
It took awhile before I had no headaches or nausea with it though.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
i do remember - and if memory is working at the moment - tht rifampin is not a med to be stopped and started abrubtly - so i don't understand the pulsing with this med
do a search for rifampin - i tried and could not find the site i was looking for - i remember this being mentioned by dr and in literature online
also, many other drugs interact with this med, so check the list
i have been on rifampin for some time, and it has helped me immensely - but do get incredible head pain/pressure - it is much worse w/out my meds
detoxing might be something to try
take care
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
posted
DO NOT PULSE RIFAMPIN. It creates resistant strains.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
My head is spinning (from info, not the meds)... Thanks for all the great info.
My LLMD had me pulsing Rifampin, Biaxin and Bactrim. From what I understand, this is a common practice to several LLMDs on the east coast.
But I will check into the resistance issue immediately.
Thanks for the heads up.
If you have any info about where to look, that would be helpful, Myco. My head is not cooperating with much research at the moment.
Rifampin has given me detox issues in the past, njlymemom, so you may well be onto something there.
Many thanks to all!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
cactus - hope this link works if it does read under miscellaneous
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I didn't get a herx, but I did have a horrendous time with side effects.
I got that "buzy" wired feeling with a kind of depresive anxiety starting one hour after taking the drug, horribel headache, nausea beginnign one hour after taking the medicine, so we knew it wasn't a herx or a detox issue, but a side effect of the med (theswe are common side effect btw). I also had insomnia so bad that I did not sleep for more than 4 hours over the course of 7 days. So the doc and I agreed this drug is not for me...
I am actually very tolerant of many of the tick infection drugs, but this one sent me over the edge.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
| IP: Logged |
Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Oh and as far as pulsing goes, I believe for some patients with tuberculosus, you take the drug for every day for a while, then only once or twice a week. The pharmacist told me what causes resistance is not sticking to a regular schedule, for example, stopping it for a month, then taking it for 6 beeks, then stopping for 3 weeks etc
And as far as lyme goes, since we have no studies that look at drug resistance to rifampin, no can say for sure if the buggers will develop resistance to this drug or not.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks for the link, njlyme - I just read through and it's raised some red flags.
Amanda, like you, I think this must be a side effect issue as these symptoms are almost immediate.
One quick question - I thought it was common to have reddish urine on Rifampin (why I thought that, who knows?) -so did not think much about the dark, nuclear orangey-red urine.
But that is listed as a severe side effect. Did anyone else have this?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
H i Cactus,
I may PM you also because I would like to know what happens if you decide to stay on this drug.
I also ended up in the hospital after taking 600mg a day for about 2 weeks. All of my veins in the backs of my legs were busting (bruising). I had severe chest pain and a blood pressure so high I didn't think that one could have a BP that high.
I also was unable to sleep because my sleep meds didn't work with this drug.
Having said all of that, I have always wondered what would happen if I tried it again at a lower dose. My doctor thinks this is a very good medicine if I can tolerate it. I'm scared to try it again.
Please send me an email in a couple of weeks and let me know how it is going.
Oh and yes it is a normal side effect to have reddish urine.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi Haley - wow, you toughed it out for 2 weeks??
Whoa - you are braver than I.
After the last time, ending up in the hospital - I am seriously cautious with this one.
And, it's good to hear that I didn't dream up the reddish urine being normal. Thanks for that.
I just spoke with LLMD, and the plan for the time being is to stop the Rifampin.
Not sure I'll be brave enough to try again, this time around felt too close to the way it all began last time...
We'll have to keep in touch about any future attempts at taking it, though, and I will let you know if I suddenly become brave enough to try again, Haley.
A big thanks to all for helping me out on this one.
It's good to know you're all out there, and that we can count on each other.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
It is normal and expected to have the orange/red urine.
The severe side effect of dark urine would be a dark brown/tea color and due to liver problems.
Posts: 819 | From East Coast | Registered: Apr 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Isn't Rifampin the one that you are not supposed to start and stop, for some reason (maybe it was resistance issues)?
If that is the case, then I'm not sure if pulsing it would work. Unless it still seems to be doing something while you're pulsing it, etc.
Just something to think about/look into. You might find info on what I mentioned by just searching this site.
I didn't feel a lot from Rifampin, just more tired. I had bart herxes on other drugs though (Bactrim, and another time, Zith with Plaquenil).
Good luck!!!!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks, kitty - that is what I thought also. Good to get confirmation.
Hey Hoos, thanks for your experience on this one, too.
I've stopped it again, per LLMD. I think this one is just not a good one for me.
Despite being off of it, I am now having a lot of swelling - mostly around the neck, shoulder blades and upper body. [Sigh]
Have had this before, too, bu can't remember if it was connected to the other bad Rifampin experience.
Some days we all deserve a TBD holiday, just to get our energy up for treatment, ugh.
Thanks again, all, for all the support and help!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
My husband couldn't get off the couch for a week, but then started to make improvements.
I got my life back on rifampin. Got me to 100%, which tells me that bart is still a big issue for me. Had to stop it due to ankle pain(could this be tendon related?). Going back on it soon with IM gentamicin.
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
happens.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Sorry to hear that it was so hard on you too, txgirl.
It seems to be a great med for some, and a little (big) slice of trouble for others.
Flagyl can be tough also - hang onto your hat.
But with flagyl - hopefully you'll know it's herxing rather than a side effect problem.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
Got me to feeling 100%. I would stick with it if you can and if you have Bart.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Rifampin is also a Lyme drug according to my LLMD.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Myco brings up something important. I just saw my (well respected) ILADS LLMd last week. He wants me on Rifampin. I asked to pulse or start low. He said "Absolutely not, Rifampin causes resistance if you "play" with it, either do the full dose daily or not at all". Also there is a flu-like illness it can cause if not taken "correctly". I honestly don't know if I will take this drug.
From the following website under "Musculoskeletal" : http://dermnetnz.org/treatments/rifampicin.html Rifampicin is sometimes used intermittently (less than 2 to 3 doses per week) for the treatment of tuberculosis and leprosy. When rifampicin is used in this way, it may be associated with a `flu-like syndrome, shortness of breath, low blood pressure, acute renal failure and shock.
This paragraph is taken from this site: http://www.medsafe.govt.nz/profs/Datasheet/r/rifadin.htm Because of the possibility of immunological reaction (occurring with intermittent therapy (less than 2 to 3 times per week) patients should be closely monitored. Patients should be cautioned against interruption of dosage regimens since these reactions may occur. Also at this site - Rifampin has been reported to possess immunosuppressive potential, which I really don't like.
I am really torn about taking this drug, it seems risky. On the other side of the coin, my sister w/LD did well on it, but I don't think she has Ehrlichia or Bart, so that is probably why.
Talk to your LLMD about this and maybe if you are having this hard of a time he could switch your meds entirely. If you are after ehrlihcia, Doxy, mino are choices. Bart specifically B.henselae I beat w/ Biaxin. Zith is also good. The quinolones are used for BLO's.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic