Starting Dificid today

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Ali-Mar
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Re: Starting Dificid today

Postby Ali-Mar » Wed Apr 29, 2020 1:10 am

That is great to hear things are going well, hope we all will get through this. I am also taking two Florastor in AM and two at night, I also take one VLS3 at noon, I bought some Activia yogurt had few last week, but stopped, I was having some bad days and was not sure what was causing it, I will try it again later.
That is so great you back to normal bowels, I never got back to normal formed bowel while on Flagyl, nor while on Vanco, neither the 5 weeks post Vacno. And I had so much PI-IBS post Vanco
Last edited by Ali-Mar on Fri May 15, 2020 10:19 pm, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Ali-Mar
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Re: Starting Dificid today

Postby Ali-Mar » Wed Apr 29, 2020 1:30 am

NanciT, it is encouraging to see folks beating C-Diff. How did you beat it 5 years ago after battling for a year
Last edited by Ali-Mar on Fri May 01, 2020 9:39 pm, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Ali-Mar
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Re: Starting Dificid today

Postby Ali-Mar » Wed Apr 29, 2020 4:02 pm

Thanks Elvish,
Did your ID doctors recommended the taper to you? I am on my third day of Dificid, and already seen more improvement that I seen on the whole course of Vanco and the 8 days of Flagyl. I am thinking of asking my Dr for 20 more pill, I think your extended - taper , was 2 /day for 10 days, 1/day for 7 days and 1/48 hours (every other day) for 23 days? I would like to try that, but I cannot find online evidence. The info online and a ID assistance i contacted suggests a extended-pulse version which using only 20 pills: 2/day for 5 days and 1/48 hours (every other day ) for 20 days... I am to afraid to do the regular dose for only 5 days and than taper, it feels too early to stop ..
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
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Re: Starting Dificid today

Postby roy » Wed Apr 29, 2020 5:06 pm

You should take your meds as instructed by your doctors.
The experts designed the correct use of Dificid after many years of trials.
The best course of treatment is the least amount of meds to do the job.
More is not better.
Its overuse and the misuse of antibiotics that CAUSED c.diff to become a disease.
Do NOT self medicate or adjust dosage.

Ali-Mar
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Re: Starting Dificid today

Postby Ali-Mar » Wed Apr 29, 2020 6:31 pm

Roy,
I agree with you 100%. Under normal circumstance, I normally trust my doctor’s and follow his instruction. But unfortunately, it is different with C-Diff, the doctors that I talked to or seen don't’ know much about the C-Diff. And so far I have talked to two GI dr, one ID and my primary doctor. I have video appointments with the 3rd GI tomorrow and with the 4th GI on Friday. Hopefully one of the two new GI will know how to treat C-Diff, and will stick with her/him. I will ask their her advice tomorrow.

As far as the Dificid, my primary doctor and one the GI dr ( the GI that prescribed Flagyl 6 weeks ago) suggested to take 2 pills per day for 10 days. Dr Michael Butera is an ID doctor in very well know in San Diego for ID. He has saved many life’s. I dont know if he has experience with C-Diff or not, but he has been an ID dr for over 30 years. He is very busy with COVID 19 right now and hard to see. I called his nurse and ask her to seek his advice on my behalf , he suggested to take 2 pills/day for 5 days and than 1 pill/48 hours for 20 days ( total of 20 pills)... I dint get to talk to him, so I though may be he did not suggested the full taper, because of the high cost of Dificid, so I asked his nurse to go back to him, and let him know my insurance covers Dificid and I can refill every 7 days if necessary. I am supposed to hear back from Nurse on Friday, keeping fingers crossed

With the C-Diff unfortunately you have to self medicate :-( my primary doctor has over 20 years experience, he is a great doctor. But he has only one C-Diff patient per year and this was his first time in his life prescribing Dificid, and that is because I asked him for it. ....
Last edited by Ali-Mar on Wed Apr 29, 2020 7:52 pm, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
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Re: Starting Dificid today

Postby roy » Wed Apr 29, 2020 7:29 pm

I can only repeat that you should take dificid according to the makers instructions.
The ONLY use for dificid is for c.diff and the course is to be considered as a single dose or treatment.
That dose involves maintaining a constant level of active medication in your colon for 10 days.
Any other method is NOT in line with experts oppinion, its trial and error.
Your early on in your c.diff journey and should not try experimenting.

Ali-Mar
Long Time Contributor
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Joined: Sat Mar 21, 2020 4:17 pm

Re: Starting Dificid today

Postby Ali-Mar » Wed Apr 29, 2020 8:47 pm

Thanks Roy,

Great point re makers instruction, I think they recommend 2/day for 10 days.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

beth22
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Re: Starting Dificid today

Postby beth22 » Thu Apr 30, 2020 1:21 am

Ali-Mar, some posters were given a taper of Dificid after the 10 days course, so it is certainly something you can ask the doctor about. You mentioned Activia. When I tried it when I was first on vanco, it made me really gassy and gave me loose stools. Regular yogurt, at that point in time, did not, although later on in my c diff journey I became lactose intolerant.

poppy86
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Re: Starting Dificid today

Postby poppy86 » Thu Apr 30, 2020 5:54 pm

I'm sorry to hear of the relapse, I hope you feel better very soon and that the Dificid works for you.

Elvish2
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Re: Starting Dificid today

Postby Elvish2 » Fri May 01, 2020 5:44 pm

Glad it seems the Dificid is really working for you! The subject of if/when to taper/pulse is a tricky one. I agree with other posters that you should take your regular full 10-day course as prescribed. If your doctor then decides a taper/pulse following that is necessary, then of course follow their advice.

Personally, I consulted with my primary and ID doctors about doing the taper/pulse after I finished my regular 10 days. My taper/pulse was a second 20-pill prescription that I took 1/day for 7 days, then 1 every other day for the remaining 13 pills. The regular 10 days of Dificid should be enough for most people (yourself probably included), but past patient history etc should be taken into account. I didn't mean to extrapolate my experience onto what the usual experience should be, as I'm not a doctor! I also understand how frustrating it can be to feel like we have to advocate for ourselves when doctors don't seem to have the appropriate knowledge or expertise.

A study that references Dificid tapering for harder-to-treat, recurrent cases is here. Please note that it may not apply to your situation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4281782/
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

Ali-Mar
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Re: Starting Dificid today

Postby Ali-Mar » Fri May 01, 2020 7:36 pm

Thanks Elvish,

How are you doing, you must be around 7 weeks post treatment? Hope you are recovering fast

I think I found a good GI doctor after a long search. I had my first video appointment with him today. He suggested to finish my regular 10 days dose (2/day x 10) and than taper 1 every other day for two weeks and than one every 3 days for another two weeks. I also called the office of a very well known and experienced ID doctor, he was too busy with COVID 19 to see me, but told his nurse to tell me; after i finish my regular dose to taper and take 1 pill every other day for two weeks. I just completed 5 full days of the regular 10 day dose. So I have 5 more days to decide which taper to do. I am leaning towards the ID dr taper, it is less antibiotic

Having said that, I am having Sore throat, a funny test in my month, and little white code on my tongue, it looks like I might be developing oral thrush, I hope not . I cannot stop the Dificid
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

beth22
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Re: Starting Dificid today

Postby beth22 » Sat May 02, 2020 1:57 am

If you get thrush, tell your doctor and see if they can give you something to swish in your mouth. My mom used to take Nystatin liquid to swish and swallow. I have used it before too, but I didn't swallow it.

roy
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Joined: Sat Aug 02, 2014 1:05 am

Re: Starting Dificid today

Postby roy » Sat May 02, 2020 5:17 am

Not sure if dificid is capable of causing thrush!

Ali-Mar
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Joined: Sat Mar 21, 2020 4:17 pm

Re: Starting Dificid today

Postby Ali-Mar » Sat May 02, 2020 10:41 am

I took Flagyl and Vanco before the Dificid, can it be from that time
Flagyl: Mar2 - Mar10
Vano : Mar 10- Mar20
Dificid April 26 - present
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Starting Dificid today

Postby Ali-Mar » Fri May 15, 2020 10:29 pm

Started the every other day Dificid taper yesterday. I am having so much cramping, long lasting cramps today, for most of the day, it is worrisome and concerning. Had two BM today, got up at 6:00 to go for BM... no WD just semi-formed which is comforting.

I desperately want this to be over, so I can move on. Having said that, I won't feel comfortable and safe until I get to 8 weeks post treatment
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020


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