I need help making a treatment decision...

[Pico]

Uuuuggghhhh...

I'll keep this as short as I can. I have a problem and need to make a decision, and I'm hoping to get some feedback/opinions.

I had my first c. diff relapse. I was prescribed another round of Flagyl (500mg 3x a day for 10 days) and as it stands right now I have I have 4 days minus one dose left to take (11 doses total). Two days ago I started to have an allergic reaction to the Flagyl - mild itchy feeling on my arms, hands, scalp, and torso. A rash/bumps would only appear if I scratched, if I stopped scratching they would disappear. Last night the itching on my hands got a little intense and now my hands HURT. They don't look swollen, but hey FEEL swollen, like joint pain. I had to have my boyfriend hook my bra on for me this morning because it literally hurt too much to grip the clasp. It's only in my hands and it doesn't seem to be getting worse but doesn't seem to be getting better - Benadryl helps a little bit. My primary doctor thinks it's an allergic reaction, obviously, and advised me to stop the Flagyl. He originally wanted me to switch to Bactrim as an alternative treatment for the c. diff. This, as you all know and some of you have told me, is idiotic because Bactrim causes c. diff, it does not treat it. At this point I have ZERO trust in my doctor. When I told him I was not comfortable taking the Bactrim I believe his exact words were, "I don't know what to tell ya..." He is useless. He said I could probably just stop the Flagyl without continuing any treatment for the c. diff. This also just seems idiotic to me to stop mid treatment! I do not want another relapse! He decided he'd call in a script for Vanco. for me, which I know is an approved treatment for c. diff so that's good but I'm still hesitant. For one, I really don't think I can afford Vanco. at this time and for another, I just don't have any faith in anything my doctor is telling me right now. I really would feel more comfortable seeing a specialist and having him/her prescribe the Vanco.

So here I am at a crossroads with limited information and what feels like no real good options...

Option 1 - Stop the Flagyl and discontinue treatment for the c. diff altogether... Pros: Stop the allergic reaction from happening, Cons: Am I going to relapse again?!?!

Option 2 - Stop the Flagyl and take the new Vanco... Pros: Stop the allergic reaction while continuing treatment for c. diff, Cons: Cannot afford it and my comfort level in taking anything my primary doctor prescribes for me is extremely low, my preference would be to talk to a specialist before taking this more intense and expensive drug.

Option 3 - Keep taking the Flagyl (with Benadryl) and monitor very closely (and hopefully see a specialist ASAP so I can switch meds with more confidence)... Pros: Carry through with c.diff treatment as originally planned and hopefully only have to take the Flagyl for a few more does if I can arrange to see a specialist tomorrow. Cons: The allergic reaction could get worse and I'm worried about long term consequences of this happening to my hands.

I'm leaning toward Option 3 - I'm also having a feeling that most of the feedback I'm going to get would be to go with Option 2, but man... I just don't know if I want to take the Vanco. w/o seeing a specialist...

I know you guys aren't doctors and don't have an end-all answer for me - but I need some help. WHAT WOULD YOU DO in this situation?

Thanks! - Pico

[getwellsoon]

If it were me I would definitely go with option 2. Vanco has a much better cure rate. At the first sign of allergy to Flagyl you should stop. It can have lasting side effects so you don't want to get worse. Ask the Dr. to prescribe liquid Vanco, its much cheaper and they compound it. Let us know what you decide and how you do. Good luck. Carol

[seekingcure]

Hmmm, that is a dilemma. At least you do know not to take the Bactrim--that's good. Would have almost certainly made you relapse, in my opinion.

A couple of questions: How much Flagyl did you take the first round?
How are you doing while on the Flagyl? (other than the rash) Do you feel like the c-diff symptoms are gone or do you continue to have bowel and other symptoms of c-diff? I know when I took it, my bowel movements were actually pretty normal, but my other symptoms of c-diff continued, predominantly the heart palpitations and chest pain, as well as no appetite, and just generally felt very ill. It never went away until I started on the Vancomycin, so I think even though my bowel symptoms were under control, I still had c-diff that was affecting me in other ways.

One way or the other, I, personally, would get off the Flagyl, but that's just me. Are you also having any tingling or numbness in your hands? If so, that's a symptom of peripheral neuropathy, which Flagyl can cause. I would think pain would also be a symptom of it. If it was me, I would just be afraid to continue taking it, even for a few days, with that reaction. Ultimately, that's a decision you're going to have to make yourself, though. I agree that stopping the Flagyl without taking the Vanco just six days into treatment would likely result in a relapse. It's probably more common to take the Flagyl for 14 days than 10 to start with. If you feel more comfortable waiting for the specialist to advise you, then you have to decide whether the risk of relapse from c-diff is more worrisome or the risk from the Flagyl is more worrisome. You might be okay stopping it for the rest of the day, if you know you can see someone tomorrow, but I would want a doctor to tell you that. Do you have an urgent care center you could go into today? Perhaps they could give you some direction.

As far as the Vanco goes, if you are worried about expense, and who isn't these days, get the doctor to write the prescription for liquid vanco. You will have to find a compounding pharmacy to get it mixed up. It's very inexpensive compared to the capsules, only about $70 for a two week supply of 125 mg. four times a day. Since it's a holiday, you might have to get a few of the capsules to get you through til tomorrow and then have the prescription transferred to the compounding pharmacy. Most drugstores in my community do not mix it, but your area may be different. Call the drugstore and ask.

I have been on the Vanco for over a month now, four times a day, and have just started a taper, and the only side effect I've had from the Vanco is looser stools. They have not been as firm as they were on Flagyl, but I generally feel a lot better. Heart symptoms are gone, no tingling in my fingers and toes, and, most importantly, no panic attacks. That's what the Flagyl did to me.

I'm sorry if this has just confused you further, but this is really not something that we can just tell you what to do. I'm not even completely sure what I would do if I were in your situation.

One more thing: What dose and length of treatment with the Vanco has the doctor called in for you? Typical dosage is 125 mg. four times a day for ten days to two weeks or 250 mg. four times a day for ten days to two weeks. My doctor also added a taper at the end: 125 mg. twice a day for a week, then 125 mg. once a day for a week. I would feel more comfortable if she would also add a pulse at the end of 125 mg. every other day for two weeks and 125 mg. every three days for two weeks. A lot of people on this board have had success with tapering and pulsing. I'm like you; I just don't want to relapse again. I am ready to be done with this and get on with my life!

Good luck and let us know how you do.

[BananaSlug]

Flagyl is scary stuff. And if you already had a relapse, flagyl probably wont do anything.
seekingcure said everything right there.

and yes, do not take the bactrim.

just see if they'll write you a script for liquid vanco. compounding pharmacies. just type it into a search online with your city and most cities have them. if not, you can try outside your city. its really simple and very low cost. i dont have insurance and it cost me $135 instead of $2000 like the pills would have cost. other places have it cheaper, as seekingcure said.

vanco has given me NO side effects whatsoever since taking it. flagyl failed for me. and the side effects were ridiculous. just have him write you a script for vanco and try some probiotics... kefir.. florastor... during and more so after to repopulate the good flora.

if flagyl fails... then next step is vanco. then next step is a vanco taper.. and then more tapers.... or dificid. which is a new drug that targets cdiff, but i dont know how that prices out. vanco supposedly works very successfully.

[frogerina]

Do you have health insurance that helps with prescriptions? My doc was able to call the insurance and certify my need for Vanco, which brought the cost down quite a bit (still pricey...but cheaper than re-admission to the hospital -- that had to get the insurance co's attention...).

If you are having an allergic reaction to a medication, most docs will say it is very important to stop the med -- allergic reactions can get worse, quickly and dramatically. Also, let any doc that treats you in the future about the allergy -- there are often cross reactions to other drugs similar in class.

Finally, do you have the option to find another primary doc? Sounds like you are not comfortable with the current one's knowledge base and treatment decisions. Maybe not this minute...but perhaps do some research. You mentioned seeing a specialist -- have you followed up on that? Considering GI or ID?

I hope things resolve soon, and you have excellent medical help in determining the best course of action.

[Bobbie]

I'm with the majority - I'd go with the Vsanco. Many have lasting side effects from Flagyl, and Vanco is often more effective. If tapering doesn't work, try pulsing it. Pulsing has helped several on the site. See CDI - Pulsing.