NEW MEDS & PROCEDURES TO FIGHT C DIFF

This forum is for discussions related to C. diff. including symptoms, doctors, medical advances, medications, If you are a new poster (joined within the last month), you can post more often for two months from your date of joining. After that time, one post per day only about "you." You can post more often to support others. Post other topics in Free Form Discussion and Chat Forum.
Bobbie
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NEW MEDS & PROCEDURES TO FIGHT C DIFF

Postby Bobbie » Thu Mar 26, 2015 2:05 am

There is nothing good about C diff, but this is a better time to have it then years ago. I was in two studies many years ago - one for Florastor (s. boularddi) and one for Culturelle. Neither helped or harmed me.

Several of our posters are involved in trials. We understand that some things have to be confidential, but please share what you can to give others hope.

Warnings:

Submitted by ReserachGrandma - information about Clinical Trials.

Helpful information is available at the NIH clinical trials site. See http://www.nlm.nih.gov/services/ctphases.html.

Basically, clinical trials are conducted in phases (1,2,3 & 4).

Phases 1 and 2 are mostly to evaluate safety, look for side effects and identify proper dosages.

Phase 3 is where the drug is tested in large groups to compare effectiveness, compare to commonly used treatments, and monitor side effects.

Phase 4 is after the drug has been released and follows the drug in various populations and to continue to monitor side effects.

If anyone is considering participation in any clinical trial, you should read the research consent documents very carefully before signing and make sure you understand them fully. The research documents should indicate that they have been reviewed and approved by the institution's Institutional Review Board (IRB). No doctor should rush you into signing - that is definitely a sign of a badly run research program.

I began googling the new meds/procedures to fight C diff and then found this comprehensive and well-done list on a C diff support site on FB. The site is now listed as the Fecal Transplant Support Site. Thanks to it for this information.

http://thepowerofpoop.com/resources/innovation/

The hyperlink lists pharm. company, med./procedure, contact information and trials. Years ago, we had just flagyl to fight C. diff. Then, in l979, Dr. John Barlett of Johns Hopkins discovered IV vancomycin given orally was effective against C diff. Several years ago a new drug, Dificid, the first drug manufactured exclusively to fight C diff, was put on the market. The FMT was also introduced widely at this time although it has been around for years. Count the new products/procedures - there are approximately 30!

Deaths from C diff have almost doubled, and many more people are now affected by the infection so there is money in treating C diff. Pharmaceutical companies do flock to "the bottom line." (Pun.)

Bobbie
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Re: NEW MEDS & PROCEDURES TO FIGHT C DIFF

Postby Bobbie » Tue Mar 31, 2015 3:13 pm

There is a new vaccine for C diff. There was one ten years ago in Boston with a limited small trial that was terminated when one or two participants reported side effects. This vaccine is manufactured by Sanofi-Pasteur and is in Phrase 2 trials and getting ready for Phase 3. One C diff researcher estimates it will be ready for market in two years.

http://cdifffoundation.org/2015/03/13/s ... diffradio/

Hope some of you can listen to the broadcasts listed on the website and report to the rest of us. Also, if there is anything notable in some of the other meds/procedures, let us know.

Bobbie
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Re: NEW MEDS & PROCEDURES TO FIGHT C DIFF

Postby Bobbie » Tue Mar 31, 2015 3:33 pm

FMT via pills - By Selady - March 27

I have suffered from c. diff for about 7 months now and have tried every medication treatment option and been hospitalized. I am only 31 and this illness has just flipped my entire life upside down! Since I last posted, I have since had 3 recurrences (6 episodes total) and have been on vanco 4x/day at 250mg since Decemberr. Anytime we try and taper down, I relapse again, even while on the vanco.

I have been accepted in Dr. Thomas Louie's clinical study on FMT via pill. Dr. Louie felt like a mythical beast at times. Not only is he talked about all over the internet, but my ID specialists would all refer to him but no one had ever met him (I live in Calgary where he practices). And no one knew if he was even accepting patients at all or still performing the FMTs! I was warned that even though 3 doctors had referred me to him, that I might never hear back and would have to travel to be treated elsewhere.

I received a call last Friday that my referral had been accepted and I met with him yesterday. I will be part of his clinical study which is comparing the use of FM pills to transplant via colonoscopy. I was screened and placed in a computerized system that randomized which method I would receive. I am very excited to be able to receive the pill method as it's innovative and neat to be a part of something ground breaking! Less than 150 patients have received it here. I love that my terrible time with C. Diff. will contribute to the research and development for a sustainable treatment option.

I know that there is another post in this forum that outlined an amazing Q&A regarding pills, but I would be happy to ask Dr. Louie anything else you would like to know! My procedure is next week, which feels like a dream.

Bobbie
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Re: NEW MEDS & PROCEDURES TO FIGHT C DIFF

Postby Bobbie » Sun Apr 05, 2015 10:47 pm

Here is more info. regarding trials.

http://cdifffoundation.org/clinical-trials-2/ - from C diff Foundation . Posted by Roy.

Anna
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Re: NEW MEDS & PROCEDURES TO FIGHT C DIFF

Postby Anna » Tue Aug 11, 2015 6:27 pm

Bobby, how did the procedure go?

Bobbie
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Re: NEW MEDS & PROCEDURES TO FIGHT C DIFF

Postby Bobbie » Sat Aug 15, 2015 5:01 pm

Contact Selady. She had the procedure.

PS I just PMed her.


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