Dificid

[NanciT]

I just completed the 10 day treatment....10 days ago. I felt great at first, now feel like it may be coming back. Has anyone taken a second coarse of Dificid? I thought I saw a Dificid taper but cannot find it.

Of all the medications I have been on, I felt the best after this. I almost feel if I had taken it a bit longer it would have been better.

I would appreciate any info

Thanks

[getwellsoon]

I never had to take a second course but I think some on here have. I'm sure they will chime in. Sometimes when I came off meds I felt worse but this was just IBS. You might have this as the symptoms of it mimic Cdiff symptoms. If youaren't having copious D I would discuss with Dr. treating the symptoms. If you feel really bad I would get another stool test after you have been off meds for at least 7 days. Good luck and hope you feel better. Don't know if they do Dificid tapers, haven't really heard of that but another question to ask you Dr. Let us know what he says.

[NanciT]

I am now post Didcid 11 days. I had been feeling great, symptoms seem to come and go but no D. I wish I could say my doctor is up on all this but I have had much more info and facts from this forum. I have searched for a new doctor and this is my second GI. I have an appt with Dr Stollmen in December.

What concerns me is the Vanco stopped working and did nothing for the 3 round. I am trying to come up with some plan in case it comes back. I have fear it will but I trying to get past that fear and move on. It seems strange to me to have no symptoms for several days and them slowly the abd pain starts and I think its coming back. Searching for a back up plan.

So happy to hear the Dificid worked for you...that gives me Hope!!

I appreciate the response!

[cdiffhorrible]

Hi I am new to cdiffdiscuss.org.

My story is having had inguinal hernia surgery in April. Came down with horrible diarrhea 8 days after stopping the vicodin for pain.

I did have an antibiotic during surgery for a heart murmer.

I have never experienced anything like this. Tested negative but, continued to have loose watery movements for months. Went from doctor to doctor who gave me a 5 day course of Flagyl which seemed to turn things around. But, then tested positive for a urinary tract infection from all of the bathroom visits and ended up on Bactrim. Wow. That opened the flood gate. Got retested at another hospital and tested positive three times before they admitted me. I was so sick I ended up in the hospital for 2.5 days. I am 46 with no health issues. I was put on Vancomycin which worked pretty well however it took about 8 days for it to really start to work. I was on it for approx. 3 weeks tapered down and then two weeks free of C Diff symptoms.

Unfortunately it came back with a vengeance. I tried Vanco again for 10 days. It did very little. I was still going 5-8 times per day.

I am now of Dificid. It worked immediately when I took the first pill. Things firmed up fast. I just finished my last pill of the 10 day course. I have not had any side effects so far. I paid $15. It is very very expensive.

I am now going to take one pill a day for 7 days and then 1 pill every other day for 2 weeks.

A little concerned because I did have 4 bowel movements yesterday all firm but, still that is a lot for me.

I am praying this works. Otherwise a Fecal TRansplant is in my future.

I have been a nervous wreck over this whole experience. I feel for all of you who are suffering with this. You really cannot appreciate the suffering it causes unless you experience it for yourself.

I hope Dificid works. I have heard good things. Ask you doctor about it if they do not suggest it. From what I have read it is best to give it early on rather than later as it is more effective. I do not know what strain I have. The lab lost my sample. So I cannot speak to that but, whatever it is it is very stubborn.

I have lost weight. It is hard to stay positive but, we must. Hugs to all of you who are struggling with this horrible of horrible conditions.

[beth22]

Thanks for posting your story and I am sorry that you are going through this. Hopefully, the Dificid will turn things around for you. Please post with questions if you have any or if you just want to share what you are going through. We are here to help where we can.

[NanciT]

Thanks for posting your story and response. I have had a rough time with the difficid this second round and ended up in the hospital with dehydration. I also am starting a similar schedule. I finished 10 days and now will take 1 per day for 10 days. I will then take 1 every other day for 20 days. He mentioned possibly another round of every 3rd day.
I do not feel well on this although the original 12 days I felt fine. I am not sure why . Just hoping and praying this works and I am waiting for an appt with the doctor in my area that does FMT's. I keep thinking this is going to work.....just must stay positive although it is so very difficult to do.

Wishing you the best...........hoping this works, it has worked for many and I found a study online that was VERY positive with this type of dosing!

[Viurre]

In March 2015 I had a colonoscopy and the doctor who was treating me [who was not my normal doctor, my usual doctor was on leave] believed he saw "a" pseudomembrane, and immediately put me on Vanco for a month. I did not test positive for c.diff, but he said "you have it anyway." My diarrhea got worse and worse, so after a month of this (I feel it was the Vanco giving me diarrhea), they let me have a week without any treatment, and my stools sort of began to be formed again (but were still odd shaped and ropey) and I was still having some mucus so they switched me over to Dificid. My stools were again unformed and got progressively more liquidy. During this time period, I have also been taking Florastor in an attempt to balance this. My question is, has anyone gotten diarrhea from Dificid? Has anyone gotten it from Florastor? I have now been on Dificid for over 18 days. Has anyone ever been put on Dificid for 18 days or more without a break? I am wondering if I am being mismanaged by my substitute doctor. He has a pet project in c. diff studies, and I am wondering if i could be misdiagnosed by his enthusiasm for this specialization. Before I had the colonoscopy I did have IBS symptoms and minor rectal bleeding, but I have had UC in the past (11 years ago, was in remission without maintenance meds for 11 years). When he first told me I had c.diff, I was thinking, well, at least if I get rid of this the flareup will go away. Now I don't know what to think. I have a tendency to have bad reactions to most medications given to me, and am generally wary of being on anything that isn't absolutely necessary. How am i to know if its something I am taking vs. actual c.diff? When should I take ahold of my treatment and just say "ok, I am stopping this" because it is not helping?

[roy]

C.diff is not the only thing that can cause "a" pseudomembrane.
If the huge amount of treatment you have had has not resolved your symptoms then its time to consider other causes.
Why did you have a colonoscopy?
Did you have any c.diff symptoms before the colonoscopy?

[Viurre]

I was having some very minor bleeding, and I had one bout of diarrhea. These things may not have been connected at all, in that once I had the colonoscopy, I discovered that I had hemorrhoids (I was unaware they were as bad as they were). For the few months before the colonoscopy, I was having constipation on and off and the bleeding may have come from the hemorrhoids, but being that I'd had UC in the past, I may have jumped to the conclusion that the bleeding was a sign my colitis was back. So I scheduled a colonoscopy to check and be sure. But, like I said, my usual doctor was away on leave (may not be back until July) and I had never seen the substitute doctor before the colonoscopy. I had reported to him last week that I felt the Dificid was also disagreeing with me, and he immediately wanted to put me on Prednisone (which I was on when I first had UC years ago and had horrible side effects, so I refused it) or Methotrexate (which just went to show he isn't listening to me; I told him before the colonoscopy I refuse to take any immunosuppresants that have any percent chance of causing cancer--to me that was giving me a choice between diarrhea and cancer, who would choose that?) I truly do not believe in covering up the side effects of one drug with another drug, especially when the side effects are more dangerous than the side effects of the first one. I am seriously considering dropping the Dificid, to see if things are ok/to see if my stools become formed again. My prescription was for a month, and I have 4-5 days left on it, I do not think it is too early to attempt this since the standard is 10 days. I haven't had any mucus lately which may mean IF I had c.diff it might be gone, or whatever other problem it might have been has passed. But I am not even sure I had c.diff in the first place. I was having formed stools in the morning and the rest of the day just gas and mucus 2 or 3 times. I wasn't really having any diarrhea until they gave me the Vanco and then the Dificid. A lot of my symptoms before the meds they put me on sound rather like IBS.

[seekingcure]

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

I just want to welcome you to the site and give you our standard introductory letter. I have not taken Dificid, but have had my share of Vanco and I always have loose to mushy stools while on it and even afterwards. All of the medications for c-diff kill good bacteria as well as bad, although Dificid is supposed to kill less of the good than Vanco or Flagyl. I wonder why the doctor didn't confirm the diagnosis of c-diff with a PCR after you had the colonoscopy, but I guess that's a moot point now. As Roy said, you have had a lot of treatment for c-diff. I would discuss with the doctor the possibility of stopping the Dificid since you only have a few days left of it anyway and see if things start to get back to normal again like they did when you had the week "break" from medication. Some people have issues with Florastor, but I never have and feel that it helps me with diarrhea. It causes gas and bloating for some. Only way to know how it affects you personally is trial and error. Ask your doctor about adding kefir and/or other fermented foods to try to get some good bacteria back into your gut. See "media reports" for articles regarding the benefits of kefir in preventing relapses of c-diff. If watery diarrhea returns after stopping the Dificid, I would insist on being tested for c-diff with PCR and also ask to test for ova, blood and parasites, as well as stool culture, to rule out other common pathogens. Keep us posted.

[roy]

You said your new Dr has a special interest in c.diff?

My opinion is get a new Dr because your current one is a (cant write what I am thinking)!!! so just say blinkered!

Your symptoms are not indicative of c.diff and how he can justify prescribing so much vanco and Dificid is weird.
I cant understand how your insurance has not questioned what is probably over £15,000 in meds alone

[Viurre]

Yeah, I think on Monday I am going to call and try to be one of the first patients my regular doctor sees when he comes back from his leave in July. And I am probably just going to stop the Dificid without asking, it is only a few days and I've already been taking it longer than normal.

[Viurre]

Well, I met with my "real" doctor, and although he agreed with the other doctor that what I probably had was c.diff, he also agreed with me that it was probably eliminated by the course of antibiotics, and that my current problems are just diarrhea from the lack of flora in my intestines now. I also got retested, and it was negative, but like I said it was negative the first time. He is letting me continue with just probiotics, and bentyl/immodium as needed. So I bulked up on the Saccromyces Boulardi, and promptly got constipated. I was taking two capsules [500mg] in the morning and two in the evening, so I backed off to one in the morning and one in the evening, while still taking other probiotics. Unfortunately it only took a handful of days before I was back to "the runs" so I am back to taking 2 each time. It just seems to be taking a while to get back to where I built it up. My family practitioner suggested I just use Citrocel [sp?] or fiber to get rid of the constipation, but that it would take a while for me to get my flora back to a healthy level. But I have been feeling better, and I have cut down using antidiarrheals, save for Bentyl during these adjustable times.

[beth22]

I have IBS and I just had a week with C, followed yesterday with some looser stools, not quite D. It seems to go back and forth and that is one of the things that IBS does. Fiber pills never agreed with me, but for many they have. Benefiber seems to be milder, but Citrucel and Metamucil work too. There is the natural fiber - acacia powder, as well.

[skizamii]

Has anyone here had bad experiences with Dificid? The more I take it the worse I feel. Incredible all over pain, nausea, abdominal pain, weakness, fatigue, skin crawing...it is hell. I'd rather let c. diff run than take this stuff, unfortunately it is the only stuff that worked for me.