Anyone have success with Dificid?

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Kellyrbyron
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Anyone have success with Dificid?

Postby Kellyrbyron » Sat Feb 22, 2014 10:19 am

I am a 42 yr old female who just had major surgery on Jan. 14th for a pheochromocytoma tumor on my adrenal gland. In addition, they removed my kidney, spleen and adrenal gland. I left the hospital with diarrhea and 2 weeks later I was re admitted to the hospital with severe dehydration due to CDiff. I was put on a 14 day treatment with Flagyl. The Flagyl wreaked havoc on my body but I coped and counted down the days til I was done! I was taking 120 billion count probiotics along with the Flagyl and felt pretty good once the medication was over. The bad crampy diarrhea was gone. Unfortunately a week later, the diarrhea came back. I instantly knew it was back, had my PCP order a test and sure enough it was back. After great discussion and research, my PCP and I agreed to start Dificid. Thankfully, my insurance covered it with only a $45 co pay. The typical course of treatment for a reoccurrence is another round of Flagyl or the vancomycin. Because I had such a hard time on the Flagyl and the Dificid yields better results than the vancomycin, we opted to start the Dificid. I started on Monday and am 1/2 through the treatment. I have forgone the use of probiotics because I am just unsure of their effectiveness. I am feeling better. My questions to all of you are....#1, who has had success with one course of Dificid or did you require more than one course? #2 did you use probiotics with the Dificid? #3 did you have any side effects while on Dificid? I am so thankful to have found this website. Sadly, the cdiff has been harder than recovering from this major surgery. I am starting to feel human again and just want this terrible infection to go away!

AllisS
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Re: Anyone have success with Dificid?

Postby AllisS » Sat Feb 22, 2014 10:59 am

OUR STANDARD INTRO: Welcome to the site. Read the first forum, All Users Read This First, and the subtopic Guidelines for Posting to Our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody’s article and topics in CDI – C. Diff Info – Formerly FAQ, including Tests, Hygiene Tips, and Nutrition. Also read The C. Diff Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one or two rounds of Flagyl or vancomycin. A small percentage do not. Most people eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. (See FMT Information and Treatments.) Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See CDI – Antibiotics Most Likely to Cause C. Diff/Antibiotic Resistance.) Some people tolerate them; some develop C. diff again. (See Dr. Borody's article.) Don’t take medications for C. diff unless you are tested. (See CDI – Tests.)

For further information, see http://www.peggyfoundation.org/ and several other support groups on Facebook. Also, visit reputable medical sites, such as www.mayoclinic.org and www.webmd.com.

This is a support site, not a medical site. We can’t give you medical advice, but we can tell you what did or did not work for us. No one will understand exactly what you are going through unless they have had this unpredictable disease. The best protection, for you and others, is thorough hand-washing and good overall hygiene.

Although we know how devastating C. diff can be physically, mentally, and financially, this is not a fundraising site. We rarely ban posters unless they are verbally abusive, combative, or insulting; use inappropriate language consistently; or attempt to sell something through the site, in which case we usually issue a warning first.

Again, welcome. Remember, the odds are in your favor.

END OF INTRO.

Kellyrbyron, though I do not have firsthand experience with Dificid, others on this site have taken it, and I expect you'll hear from among them. I believe that some have had success with a single course of Dificid. The effectiveness of probiotics is not yet backed up with evidence-based data; anecdotally, many people report having felt they were helped by probiotics. Others have reported side-effects from the probiotics themselves, mainly of the GI type, and had to discontinue them. You may want to ask your doctor about the timing of the probiotics in relation to the Dificid. Perhaps it would make more sense to try probiotics after the Dificid treatment has ended, to decrease the potential for whether side-effects are attributable to one or the other or to the underlying c. difficile itself. Best wishes for your recovery.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

getwellsoon
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Re: Anyone have success with Dificid?

Postby getwellsoon » Sat Feb 22, 2014 3:34 pm

I relapsed many times with Vanco and when I finally took Dificid it did the trick. I am now almost 2 yrs. med free. I had IBS post Dificid but did not relapse. I do take probiotics as my GI recommended them to me. I think you made a good decision going right to the Dificid. Hopefully it will be the cure for you also. Keep us posted as to how you do. Carol
CAROL

BonSong
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Re: Anyone have success with Dificid?

Postby BonSong » Tue Feb 25, 2014 8:28 pm

I'm on it right now, day one. I'll let you know how it goes.... so far I have a lot of yucky side effects, nausea, dizzy, nervous, D has worsened.

abnova
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Re: Anyone have success with Dificid?

Postby abnova » Wed Feb 26, 2014 8:48 pm

I haven't been a member of this forum long but I have read a lot of posts here in the short time. And I do remember reading quite a few instances where people say that Dificid is a hard med to take...side effects wise. I wish my Dr could have put me on Dificid after my recent first round of Flagyl didn't work. He had no idea what it was though. And I guess he isn't the type of Dr to go outside of protocol and look at what research says cause he didn't even seem interested in what the drug did differently from the others used to treat C Diff when I mentioned it. Just said it's not his field and Id be better off with a gastro. So waiting to see a gastro and trying to decide what to do in the mean time.

Anyway, I really hope the Dificid works for you...and on your first relapse no less...to me that is lucky since it seems most have to take multiple rounds of FLagyl/Vanco to be given a script for Dificid :) So I would be optimistic in your case...a lot of people here posted that Dificid worked for them when Flagyl and Vanco didn't.

Wishing you well!

Kellyrbyron
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Re: Anyone have success with Dificid?

Postby Kellyrbyron » Sat Mar 01, 2014 10:27 am

I am two days after my last Dificid and am keeping my fingers crossed that it worked. It's so hard to tell if it's really gone. I still have gassy, abdominal pain which is tolerable. I'm still having loose BM's only in the morning. I avoided the probiotics during Dificid and started back up yesterday. I am just not sure what normal is anymore. How do I truly know if it's gone?? I've heard that you can even get a positive test for cdiff after the antibiotics. Still feeling scared and anxious!

getwellsoon
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Re: Anyone have success with Dificid?

Postby getwellsoon » Sat Mar 01, 2014 12:20 pm

Now that you have finished the Dificid hopefully you will get rid of the gassy pains. Dificid is what finally kicked CDiff butt for me after many relapses. I did have bad IBS and it is hard to tell the difference. I didn't get the worst symptoms with the IBS, like the tacycardia, flushes and watery D. I did have nausea, loose stools and other things going on and it took a long time to finally go away. If you go full blown Cdiff you will know it. You shouldn't have rampant watery D and some of the more severe things going on. It does take quite a while to get back to normal and I would suggest to treat your symptoms as they come up. I hope Dificid finally has cured you and you are now on the road to recovery. Keep us posted as to how you do and good luck. Carol
CAROL

ResearchGrandma
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Re: Anyone have success with Dificid?

Postby ResearchGrandma » Sat Mar 01, 2014 12:54 pm

I started with C. diff from 4 days of clindamycin in June, 2011. I mostly had mild but persistent symptoms, and multiple treatments with vancomycin. I would have a return/worsening symptoms/positive PCR 6-8 weeks after stopping tapers. After my last positive pcr in Jan 2013 I was seriously considering FT. The GI doctor who was willing to do it suggested I try dificid first, since it was less invasive/risky than a procedure. I ended up taking 2 weeks of vancomycin first, because my husband was having surgery and I needed to be functional . Since I wasn't sure how I would feel with dificid, I was reluctant to take it during his hospitalization and recovery. I stopped the vanco, waited 3 days and then took the 10 days of dificid (exactly 1 yr ago). I felt very weak and tired on the dificid, and saw minor slow improvement in stools at the end of the 10 days. One month later I had the worst D (B amd M) ever - but pcr was negative. And I tested neg in May and Aug too. Now I still have variable stools - the best of which are nowhere near as good as pre C. diff, and the worst are when I think about taking another sample in for testing.(I do have a script for testing just in case). But the key is 'randomly variable". When I am having a relapse there are never any better days - always a slow downward spiral.

Wendye3
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Re: Anyone have success with Dificid?

Postby Wendye3 » Wed Jan 18, 2017 6:20 pm

I finished dificid two and a half weeks ago and it seemed to do the trick but now am getting seemingly Ibs. I am taking vsl3 maybe that's contributing to ibs. My question is if cramping d etc continues when do you retest? It's only been two weeks off dificid and I heard you can test positive for weeks but not really infected anyone experiencing this? Thanks

georgina
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Re: Anyone have success with Dificid?

Postby georgina » Thu Jan 19, 2017 1:34 am

Wendye
Welcome to the site.
As you can see , this is a very old post and some of the people might not be active anymore.
Dificid is the best drug to fight Cdiff and it has been the magic bullet for many people on this site so fingers crossed that it had done the trick for you too. If you feel ok with 1 or 2 bouts od D here and there hold back on testing, do not try to retest to prove that you are cured. testing should be done only if classical symptoms are present : frequent D , abdominal pain , fever etc. In recovery you will have good and bad days but as time goes by the good will outnumber the bad ,so try not to panic if one morning you wake up with loose stool , stay calm , eat bland and stick to the three day rule.

Wendye3
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Re: Anyone have success with Dificid?

Postby Wendye3 » Sat Jan 21, 2017 7:06 pm

Thank you I'm 3 weeks out from ending treatment had issues every day this week but very erratic. I also have crohns though. I just have doctors that if I say I have any diarrhea, I've never had a fever, never really had pain Theyjust want to retest immediately and start me on more. I just feel like it's a vicious cycle how long do I wait though it's very difficult the G.I. doctor doesn't help much with any ideas how to test

Reerich
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Re: Anyone have success with Dificid?

Postby Reerich » Tue Feb 14, 2017 4:06 pm

getwellsoon wrote:
> I relapsed many times with Vanco and when I finally took Dificid it did the
> trick. I am now almost 2 yrs. med free. I had IBS post Dificid but did
> not relapse. I do take probiotics as my GI recommended them to me. I
> think you made a good decision going right to the Dificid. Hopefully it
> will be the cure for you also. Keep us posted as to how you do. Carol


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