Vancomycin - All About

Guest · Postby **Guest** » Wed Sep 26, 2001 11:44 pm

As I am pulsing, I have discovered that my body is not normal... heh heh. Vanco gets partially absorbed into my bloodstream. For a while, the "on pulse" days, my hands got cold and tingly. Now, I just went thru 4 solid days OFF. My hands and feet feel like they were beaten with a baseball bat... OWWW!!! Neurological I think. Seems like withdrawal symptoms. It got better this evening (restarted vanco this morning, and poof by night it's getting better). I cut down from 250 x 3, to 125 x 4, and am going to taper to 125 x 2 tomorrow before next "off pulse". Anyone seen this before?? Seeing doctor tomorrow just in case. Dave [Guest Posted by: 'DaveF']

Guest · Postby **Guest** » Sat Sep 29, 2001 11:32 pm

Well, I got past the neurological issues. Still pretty nauseous, but that's been true all along. I guess nobody else has had this happen. Doesn't that figure, I always have to be the odd man out. My family doctor said it seems like the Vanco is absorbed somewhat by my body and that's not normal. But there's no long term issues with this, as they give Vanco by IV to people. Thank goodness for this medicine, it beat down my cdiff. [Guest Posted by: 'DaveF']

Guest · Postby **Guest** » Mon Oct 01, 2001 4:08 pm

DaveF; Being a nurse, I'd just like to add my 2 cents worth here. I've never heard of a patient having any type of withdrawal from Vanco, and I give it IV to LOTS of people. However, we often do a lab test called a "Vanco peak and trough" to see if blood levels are at a therapeutic dose. I'm not sure this would even be appropriate with oral dosing, but is it anything that has been suggested to you? Especially since you do seem to absorb it, which I understand is uncommon for oral doses. It's just a thought to check out with your dr if you want. [Guest Posted by: 'Mary']

Guest · Postby **Guest** » Fri Oct 05, 2001 2:17 am

Why is Vanco used last? Why bother with Flagyl? Why don't they just give it out in the first place? Why is Vanco a "controlled drug" and practically takes a crowbar to pry a prescription out of an MD's hands? Because Vanco is a final defense. There isn't a stronger antibiotic. If we overuse Vanco and pathogens become resistant, we are open for an epidemic. Simple. Want to know just how concerned the medical community is about the possibility of VRE (Vanco-resistance enterococci) - take a look at the following link to see how many studies are being done! <a href="http://www.centerwatch.com/patient/studies/cat331.html" target="_blank">http://www.centerwatch.com/patient/studies/cat331.html</a> I know it's a long one - but there is a LOT of info about Vanco at the above link. You should take a look. Sam Admin [Guest Posted by: 'Admin']

Guest · Postby **Guest** » Fri Oct 05, 2001 11:51 pm

Hi Dave ,my son Michael 13yr old had a bone marrow transplant in april,was doing ok until c-diff.I think he is also having a reaction to the vanco:rash,dry skin.shaking and sick to stomach!He has been on benadryl and compazine to take the vanco! In and out with IVS!He has been on for 4 weeks,we will check this week to see if we get a negative result and if so we will start pulse dosing!Your not alone!Michele [Guest Posted by: 'michele']

Guest · Postby **Guest** » Sat Oct 06, 2001 8:45 pm

Thanks. I am off the Vanco finally... a few days after stopping, the side effects went away. I was on it for over 2 months and apparently absorbing some of it. I had cold and aching hands and feet really bad, with loss of feeling... this got worse the longer I was on it... when I stopped after 3-4 days it got REALLY bad... Then it just went away. So maybe not withdrawal, probably more reaction from absorbing it. Both my family doctor and GI doctor said it's rare, but the flushed face and hot neck I described, they said was a side effect of when it's given via IV. But it's gone now. And the Vanco seems to have gotten rid of the CDiff symptoms... Thanks again. [Guest Posted by: 'DaveF']

Guest · Postby **Guest** » Sun Oct 07, 2001 1:20 pm

Hi Dave glad to hear you are feeling better.Michael has been off vanco for two days and his rash looks a little better.I looked up vanco and it said(oral dose) :Patients with inflammatory disorders of the intestinal mucosa may develop adverse reactions(thats michael,his cat scan showed inflamed intestines,colitis)Itchy,rash,chills, nausea,drug fever,dermatitis!He has it all!The GI doc said because of radiation it could be leaking through his intestines.We also have to watch gvh of the skin from transplant,so we are stopping and seeing what is reaction and what is some gvh!Then we will go back to pulse dosing on flagyl.Michele [Guest Posted by: 'michele']

Guest · Postby **Guest** » Sun Oct 07, 2001 4:54 pm

Michele, So sorry for all the problems your son is having. Another mother (Sue) has a daughter (Patrice - I think she is about your son's age) who contacted C. diff. after a bone marrow transplant. Like these kids need more problems! I posted her yesterday about your son, and perhaps she will contact you. Sounds as though you have a lot in common. Just a thought. I wonder if the C. diff. could have caused the inflammation that was revealed on the CAT scan. Could the radiation have caused the rash? Hate to see Michael go off the Vanco. until the C. diff. is gone. Of course, sometimes it does resolve without treatment once the antibiotic that caused it is withdrawn. What antibiotic was he on? I used to work with a woman who developed C. diff. from chemotherapy. Don't know if you son has received it as you just mentioned radiation, and I don't know if it can do the same thing. Your family is really going through a lot. As a mother of a child who had lots of health problems, I emphasize with you. Hope things are better for you soon. [Guest Posted by: 'Bobbie']

Guest · Postby **Guest** » Mon Jul 28, 2003 9:20 am

My 8 month old daughter with CF has been fighting c-diff for 3 months. I'm concerned because she already has malabsorbtion problems due to the CF. She also was born premature and had surgery on day one for an intestinal obstruction. She is at risk for another one just because of her history and this c-diff infection is driving me nuts! Flagyl works, but only while she's taking it. As soon as we take her off, it comes back. We've tried 3 sessions of the 3 week therapy. 3 times/day the first week, 2 times/day the second and once/day the last week. It still comes back. Now she's been on liquid vanco for 10 days and still has symptoms. She's supposed to stay on the vanco three times/day for 28 days. The physcian that prescribed it has no experience with c-diff. He's a pulmonologist. Is it possible that the Flagyl is more effective for her than the stronger Vanco? Please advise. Thanks.

Guest · Postby **Guest** » Mon Jul 28, 2003 12:05 pm

It has been my experience as well as most people that post here that vanco works better! Flagyl made me feel horrible and made my condition worse. I think I would consult pediatric gastro if things do not improve. Maybe yogurt and some probiotics might help.

Guest · Postby **Guest** » Tue Jul 29, 2003 4:40 pm

nikateo, I'm so sorry about all your daughter's health problems. She and her parents have a lot to deal with right now. Read Dr. Borody's article on C. diff. and the topics in the FAQ section. Perhaps probiotics would be helpful. Culturelle seems to work better on children than adults (at least according to one study), and the powder inside a capsule could be mixed with her food or formula if her doctor okays it. I do think, however, that you need a ped. GI for the C. diff. I'd mention this (very strongly) to the pulmo.,and see if he can find one for her a.s.a.p. Children with C. diff. usually need a ped. GI anyway, and with the C. diff. she has a "double whammy." Doctors usually prescribe Flagyl first because it if far less expensive, and many doctors consider Vanco. to be the "drug of last resort." I'm glad she is now on Vanco. If the "tapering" and method of decreasing Vanco. doesn't work, mention the "pulsing" method to her doctors. (A description is in the FAQ section). Some doctors also decrease Flagyl in the same way. Please keep us posted on your daughter's progress. We know just a little of what you are going through.

Guest · Postby **Guest** » Wed Jul 30, 2003 10:05 am

Thanks for your help! I forgot to mention that she's been on Culturelle now for 2 months. Also, because she has CF, she has a peds GI. He doesn't seem concerned about her C-Diff. He says that we'll just keep treating her with Flagyl when she's symptomatic. He wasn't willing to try Vanco, but our pulmo was, so we went with the Vanco - thinking that would clear it. Like I mentioned and I know it doesn't make sense, the Flagyl was more effective for her with less side effects (bad diaper rash). Because of this her pulmo changed her back to Flagyl on Monday. He's doing the 3 times/day for a week, 2 times/day for a week and then once/day for a week. We've tried this three other times and when she goes off her symptoms come back. I'd like to try pulsing her off this time, but the physicians aren't familiar with it. Suggestions?

Guest · Postby **Guest** » Wed Jul 30, 2003 12:05 pm

nakateo, Sometimes Flagyl does work better than Vanco. No one (including doctors) know exactly how a medication will effect different people. Also, many times doctors (sometimes even in the same field) don't agree which leaves us poor laypeople really confused. The pulsing method is listed under "Pulsing Regime" in the FAQ section. It worked for Lauren and several other people who have posted on this board. It's worth a shot. You might print parts of this website, especially Dr. Borody's article and the section on pulse dosing, and show them to your daughter's doctors. Sometimes the written word is more effective any anything a patient (or a patient's family) can say. Since, she's already on Culturelle, I would call CAG (toll-free # listed in the FAQ section and also on the box of Culturelle) and ask their advice on dosage. Often, patients need more than the recommended dosage, but this is a tricky question, especially with an infant, and one that also should be run by the doctors. Good luck. Keep us posted.

Guest · Postby **Guest** » Fri Sep 12, 2003 4:25 am

Jeannette, it was the same for me, just a little less gas and not so yellow. And the stools were still unformed. However, for me the change came after I quit the Vanco as my stools and my stomach slowly got better, seemed like the Vanco killed off some of my enemies at least. And now I´m focusing on nutrition like bee pollen and yoghurt/fiber. However, the worst part with Vanco for me was an enormous fatigue for several days after I quit the Vanco. Now it´s better though. This disease is extremely hard to beat, that´s all I can say. My current goal is to try to get my stomach to the next level which is "a little less sick....". What can one do, fecal infusion is probably the final step but I have to plan that a long time in advance because I run a company expansion and I just can´t disappear for several weeks. For me right now I have preliminary plans to try new nutrition and then go for fecal infusion as my final attempt to beat it.

Guest · Postby **Guest** » Sat Sep 13, 2003 12:26 pm

jeanette, Hope the Vanco. is working for you by now. It usually worked for me in two to three days. If it isn't working by now, contact your doctor. Best of luck.

Vancomycin - All About

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