Dificid taper

[nickii52]

Dificid Taper Just emailed my doctor, He tells me he doesn't know anything about Dificid Taper, I have Kaiser in Northern California Does anyone know a good GI doctor in this area.

[NanciT]

Dr. Stollman in Oakland is excellent. It took some time for me to get an appointment, in the end I was on a Dificid taper so I did not need the FMT but he has done a great deal of them.

Dr. Kumar at the Palo Alto Clinic in Fremont is excellent. She is knowledgeable about CDIFF and very compassionate.
NanciT

[nickii52]

thanks Nanci

[georgina]

I heard about Dr Carl Crawford in NY is a specialist in using Dificid tapers , he cured NikaNik if I'm not mistaking.

[NanciT]

I think I mentioned I was not aware of Kaiser prescribing Dificid, I recall when I saw Dr. Stollman we spoke about that. It was brought up because my insurance covered 5 refills at the time which shocked him. It ran about $5,000 a refill. They may have added it recently to their formalary.
If you look up Dr. Neil Stollman you will find several articles in reference to CDIFF.
As a Kaiser patient you are entitled to an "Outside" consult and have them cover it. You may want to look into that.
NanciT

[nickii52]

does that mean I can be treated by that doctor

[NanciT]

With Kaiser, you can get an outside consult. You can call and explain what your GI has told you( if he does not do Dificid taper's) and you want to consult with a physician who offer's that treatment due to recent relapses and how ill you have been.
There should be a process, you would need to take the steps to do that.

[nickii52]

ok thanks ill check it out

[PattieF]

It was just confirmed - my fourth recurrence since May. The GI doc wanted to prescribe me Flagyl again! No thank you. I've done Flagyl, Vanco and Vanco taper. I told the nurse the only thing left is Difficid and asked if it should be a Difficid taper. She's going to talk to the doctor and get back to me. UGH - these doctors! I may have to go to Seattle - but the stress of long distance commutes does a number on the system too. It's 2 1/2 hours each way including a short ferry trip. I think I may have to cancel my holiday travel plans now too.

I'm also wondering if this could be a false positive. The Vanco taper (1 tx day) officially ended about 6 weeks ago. I did however take 9 more pills (approx. 3 days apart), the last one about 2 weeks ago. I had 1 WD on Sunday - and LB Tues and Weds when I submitted test. I've not had what is considered typical symptoms or odors.

So I wanted the group consensus and couldn't find anything specific: For those who have taken this drug, did you or did you not do a taper? What success did you have? Did you have negative reactions?

[amyc]

Hold out for the Dificid or try another vanco taper. I wonder why your doc wanted to try flagyl again?

I am in the minority here, but I would not want to travel with C diff. It's stressful enough being home and close to your own doctor and bathroom. I also wouldn't want to expose fellow travelers to a contagious disease if I didn't have to do so. If you can get on Dificid or a long course of vanco so you aren't having symptoms while traveling that's different. But the stress combined with eating road food just wouldn't work for me.

[georgina]

If you have a fourth recurrence your doc should consider a long course of Dificid or FMT , definitely not a Flagyl course. I really don't understand why doctors insist on treating people with Flagyl over and over again!

[PattieF]

Amyc - I did insist on the Difficid, but not without getting a little upset with the nurse. I advised they should read my history and see what has been done thus far, and talk to the other doctor in their office who said the next step is Difficid. I was just there Tuesday and told the doc I hadn't been feeling well and details of my recent bathroom trips but they wanted me to come in again today (so I could tell him in person that I should go on Difficid? Oh and they get my copay and insurance payment). So frustrating. Then the nurse says, I'll put down that you are allergic to Flagyl and Vanco so you don't have this problem again! Hello. I am not allergic.. it didn't work! The Vanco did seem to work but it just came back. I've had a lot of stress in my life of late - and really got down last week - and I think that set this back in motion. I have only been given 20 pills (haven't picked up the Rx yet) - 10 day supply.

So my questions about what works best with this medication remain. My question about tapering this med went unanswered by the doctor.

I don't think this guy knows much about c-diff but I switched docs because the original docs heavy accent made it difficult to understand. It's a good thing I've found this site or I may have just blindly gone along with whatever they prescribe. I am not a doctor but I do my research. And that's what I am paying them for: an expert opinion and advice.

I am totally with you Amy on the travel... even when I am taking meds and doing better, I still can't eat road food, and the stress of: what if I have to go? is the last thing I need. We are a half hour and an iffy-bridge trip away from the doctor as it is and that can be stressful in these circumstances.

Georgina: Yes, based on my research and the comments on this site, and my prior GI doc, Difficid should be the next course, thus my frustration with the doctor. Based on what I've read here, Flagyl should never be the first line of defense. I suspect that if I had been on a Vanco taper the first time around, that I'd be done with this by now. But since it was my third attempt to kill of the bad bacteria I don't think my gut was strong enough to keep it at bay. I also asked him about the amount of probiotics I was on and he didn't seem to have any strong feelings about it saying maybe you should only take 2 or 3. So I'm just sticking with the 4 Florastor day as suggested by the last doc.

I'm sorry for continuing to rant and whine here. Thanks for listening everyone. And again, what are your experiences with Difficid vs Difficid taper? Thanks for listening!

[NanciT]

Most start with the days days and it has cured many. For me, I did a taper after a relapse.
At the time(2014) my GI would not do FMT or help find anyone to refer me to. I found a Dificid study online after the relapse( it was my 4th) and he agreed to the taper. It was long, very harsh on my system but it worked. I want to add I had no issues with Dificid the first 10 day treatment.
There are several on here who did a 30 days taper I believe, if you look up DIficid on the site you may find it. I believe they all did well. It is a very expensive drug and some have difficulty getting more than the 10 day recommended dose.
Hoping this works for you!
NanciT

[Musings]

Hi Pattie,

Am currently on the standard Dificid course (10 days - 2 pills/day) but just spoke to my GI and depending on how I feel Monday/Tuesday we might try a short taper since I relapsed after both flagyl and vanco. If she approves the taper, I'll do what another member's daughter had success with - standard 10 day course, 1 pill a day for seven days, and then a pill every other day for 13 doses.

On my third day of Dificid and while the frequency is down, not seeing any other improvements yet but had the same experience with vanco until day 7/8.

Best,

Lauren

[amg]

I really think that by the time someone has relapsed a few times after Flagyl and Vanco, they DESERVE a Dificid taper. If you try a new hair conditioner because you want softer hair, and the conditioner you try doesn't make your hair softer, are you going to keep trying the same conditioner? Or are you going to try another brand? Common sense.

Vanco and Flagyl wipe out good bacteria in the gut, and the patient needs time to build up their good flora again. If Dificid concentrates on c diff and leaves the good flora relatively unscathed, then that gives your body time to repopulate the good bacteria. A 10 day course doesn't seem like it gives the body enough time. I don't know what that's so difficult a concept or why some patients have such trouble convincing their docs to try this. And no, Flagyl should not be given multiple times due to the risk of nerve damage. *rant over*

Pattie, can you email your doctor the following link to a paper with a Dificid taper being shown effective for patients with multiple recurrences refractory to Flagyl and Vanco?
http://ofid.oxfordjournals.org/content/1/2/ofu069.full

I also used the following article to convince our ID doc. It is an experiment using a gut model, but it demonstrated Dificid sparing good flora, and it demonstrated how a taper was more effective in eliminating c diff than a shorter course.
https://www.ncbi.nlm.nih.gov/pubmed/26078392