Zenplava

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Roxanne
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Zenplava

Postby Roxanne » Thu Feb 22, 2018 7:24 pm

recurrent C-Diff. My GI Dr is recommending Zenplava, which reading about it has a high death rate on heart and respiratory. Am I correct on this? Anyone heard about it and if it works without killing you?

It's to much of a pain for him to order the stool transplant and last time I got very ill from the prep.

Antibiotic resistant.

Venting and don't know what to do. Not easy finding a new Dr where I'm at.

Lid49
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Re: Zenplava

Postby Lid49 » Thu Feb 22, 2018 8:30 pm

Hi, Zimplava side effect with respiratory problem it is if you suffer from congestive heart failure. There is one person here that was treat with Zimplva after a deficid course. If I'm not mistaking the name is Cantra.
Take care .
Lidia.

Roxanne
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Re: Zenplava

Postby Roxanne » Thu Feb 22, 2018 8:33 pm

I have some minor heart issues and possible lung cancer

Lid49
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Re: Zenplava

Postby Lid49 » Thu Feb 22, 2018 8:55 pm

Roxanne, in that case I think you really need to look in to Fmt, or a deficid taper.
Take care.
Lidia.

Roxanne
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Re: Zenplava

Postby Roxanne » Thu Feb 22, 2018 9:17 pm

Thanks, I agree. Dr wants to do the Zenplave :(

NanciT
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Re: Zenplava

Postby NanciT » Thu Feb 22, 2018 10:08 pm

Roxanne

Speak with your pharmacist. This drug is to reduce the risk Cdiff coming back, it sounds like your GI wants to treat with it?
There is also information online about the drug, it has not been out very long. If you are dealing with CDIFF and have other health issues, please consider a new GI or ID.

Sorry you are dealing with this
NanciT

Roxanne
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Re: Zenplava

Postby Roxanne » Thu Feb 22, 2018 10:22 pm

Yes, he wants to treat me with it. He's never done it, but heard this is the way to go and stuck on this treatment. I'm devastated. The other Dr here, never did one, not board certified and booked me 4-5 months out for an FMT. I don't know where to go. More Dr's need to do this, it's not that difficult. but takes time signing up, getting the donors sent etc. I'm in a town that has a high senior population, you would think there would be more doctors here doing FMT's.

Dificid taper didn't work. Can't take the other meds, allergies.

I'll try calling the hospital administrator.

Lid49
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Re: Zenplava

Postby Lid49 » Thu Feb 22, 2018 10:54 pm

Roxanne, you can go in a different city/town, Mayo have doners, Tampa, Dr Shepard, look in the list with Dr on the web, See DR.closer to you.
Lidia

NanciT
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Re: Zenplava

Postby NanciT » Thu Feb 22, 2018 11:17 pm

How long was your Dificid taper? I ask because you are the first person I have heard on this site it has not worked for.
I would travel to see another GI. I was in a similar situation back in 2014 when the FDA stopped many GI's from doing FMT's. I had gone through 5 relapses. I went on a longer Dificid taper and by the time I did get in with the GI( waited 4 months) who did them, he felt DIficid would take care of it. We planned the FMT but I did not need it in the end...thankfully

I know how frustrating it is to deal with so many doctors without an actual protocol.

NanciT

Roxanne
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Re: Zenplava

Postby Roxanne » Thu Feb 22, 2018 11:53 pm

Oh gosh, which taper!! Got C-Diff 2010, got rid of it finally about 6-7 months ago with a FMT. I have medical issues Folic Acid Conversion and Mast Cell Syndrome which makes me allergic to almost every drug. Probably why the Dificid never cured me. Even tried Flagal with it. Glad I had good prescription coverage, Dificid is so expensive.

Dificid kept the C-Diff from getting totally out of control, then that stopped. I'm back on it now, so far no relief.

Isn't it depressing how long to wait to see a doctor!

Very happy to hear you beat it. How long have you been free?

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: Zenplava

Postby NanciT » Fri Feb 23, 2018 12:21 am

We have a post of a 1 month taper. Look under CDI Mine was a study I found...and have looked for it so many times, cannot find it but I was on it for 3 months. I did not feel well the entire time, and post taper it took a good year to feel better. I am at year 3 with IBS on and off but finally have my life back.

You WILL get there, its very difficult without doctors that are knowledgeable. Look under the MD's listed, is anyone close? I would search for either a new GI or ID if you have been in this fight that long!!!
Wishing you the best!
NanciT

roy
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Re: Zenplava

Postby roy » Fri Feb 23, 2018 6:48 am

If you take Flagyl at the same time as Dificid the advantages of Dificid are totaly negated.
There's no point in taking expensive gut flora sparing Dificid if you take gut flora destroying meds at the same time.

Roxanne
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Joined: Tue Jan 24, 2017 12:10 am

Re: Zenplava

Postby Roxanne » Fri Feb 23, 2018 9:51 am

Good point about the Flagal, I'll remember that! They put me on it when giving me an antibiotic for chronic UTI's with the C-Diff.


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