IMPORTANT NOTICE

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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IMPORTANT NOTICE

Postby Bobbie » Sun Feb 01, 2015 11:39 pm

According to well-known C. diff. researcher, "There will be a new treatment for CDI, IBS, colitis soon. An oral capsule of freeze-dried powder representative of all normal microbiota components to repair antibiotic-damaged flora."

I don't have more details, but hope is around the corner. I've known about C diff since l979 when my 4-yr. old son had it (and then again six years later). I had it from l993-l997, l999, and 2011, and worked on this site for l5 years. This is the best news I've heard in all these years. No need for invasive scopes, finding and testing a donor, traveling long distances, or trying more drugs that often kill some of the good as well as the "bad" C diff bacteria.

I don't know the name of the product yet or when it will be available, but the researcher told me it would be soon. Note the description given - CDI, IBS, colitis - so evidently no need for 2 or 3 positive c diff tests.

Will let you know more when I know more, and then we will celebrate!

Misscshell24
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Re: IMPORTANT NOTICE

Postby Misscshell24 » Mon Feb 02, 2015 3:58 pm

That is great news; very exciting! I can't wait to know more and have a reason to celebrate - an end to the suffering and worrying for so many of us.

I know we don't know what it's called or when it will be available, but I read an article yesterday that SER-109 is starting phase 3 in early 2015 and the next step is commercial. I can't help but wonder if it's the same treatment that the researcher mentioned. Either way, it's nice to know there's a possibility (or possibilities) for hope on the horizon.
Michelle

mjmcgetr
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Re: IMPORTANT NOTICE

Postby mjmcgetr » Mon Feb 02, 2015 4:44 pm

I thought the same that is it is SER-109. But you bet I will be at my doc's office asking for it as soon as it is available !

Bobbie
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Re: IMPORTANT NOTICE

Postby Bobbie » Mon Feb 02, 2015 4:48 pm

This is a big advance and several pharm companies will be coming out with capsules. Seres is one. Some doc's are making them themselves. From what I've read, the problem is the incapsulation - if not done correctly, the capsule can dissolve in the upper intestine - possibly causing SIBO.

Will let you know more when I know it. To not have to worry about taking antibiotics if absolutely needed, to not have to have frequent scopes and awful preps, to not agonize over relapsing, to not have to find a donor for an FMT, etc, etc, is my idea of leading a real, regular life. Haven't had one for a long time.

roy
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Re: IMPORTANT NOTICE

Postby roy » Mon Feb 02, 2015 4:52 pm

Am I being stupid or would giving this by colonoscopy not eliminate the stomach acid problems!
I wonder how long it will be before someone opens the capsules and adds the contents to an enema!
Or are these being marketed as a food supplement (probiotic) and anything other than the oral route requires them to be a drug and go through a lot more testing?

beth22
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Re: IMPORTANT NOTICE

Postby beth22 » Mon Feb 02, 2015 4:56 pm

Giving it by colonoscopy is fine, but many doctors put the deposit into the terminal ileum, which is the small intestine. That is how I wound up with SIBO. I did not want it in the terminal ileum, but the doctor did it anyway and I was sedated. I did say before though, so I was not very happy when I woke up. SIBO specialist says that that type of bacteria should not go in the small intestine, only the colon. I think the idea of the capsules is that they are coated in such a way that they dissolve in the colon. That is the hard part - to time it right.

Bobbie
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Re: IMPORTANT NOTICEot

Postby Bobbie » Mon Feb 02, 2015 5:08 pm

See other responses in Questions, Posted in both forums so more would see.

Once this is perfected and available for use, wish we could have a party altho difficult because we live in so many places!l

mjmcgetr
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Re: IMPORTANT NOTICE

Postby mjmcgetr » Tue Feb 03, 2015 11:28 am

I would attend that party and if the pills work we could all eat whatever the heck we wanted !!!!!!!!!!!

teresajo103
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Re: IMPORTANT NOTICE

Postby teresajo103 » Tue Feb 03, 2015 12:51 pm

Well....I sure hope it is soon. I just pray that it is the real cure. I will be in that line for it.....can't wait for the feeling of a normal life.

teresajo103
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Re: IMPORTANT NOTICE

Postby teresajo103 » Tue Feb 03, 2015 12:53 pm

Mj....we will have pizza....

justme
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Re: IMPORTANT NOTICE

Postby justme » Tue Feb 03, 2015 4:50 pm

The article I read is that they were introducing the capsule into the body through an endoscopy which would, I assume, be introduced into the small intestine. I guess we'll see what happens when it gets approved. I'm guessing this relates to the article about the money healthy donors are getting to poop on demand. When it is available, I know I'll be in line for it (hopefully they'll have it available in Hawaii and I won't have to fly to the mainland for it). I am coming up on two years since my initial recovery and still suffer from a sensitive colon (probably IBS, although what bothers me seems to change from time to time). I'd love to celebrate with a double cheese, mushroom, sausage pizza from Pizza Hut.
Aloha to all of you,
Anne

mjmcgetr
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Re: IMPORTANT NOTIC

Postby mjmcgetr » Thu Feb 05, 2015 10:26 am

From my reading there are various drugs in the pipeline that are in phase III trials. SER-109 looks great but there are others. In my vview these types of super probiotics will be a new industry and there will be a variety for types of diseases and disorders. I'm interested to see these drugs in relation to anxiety and depression and ibs. I am so excited about this new field of medicine. I think once we see one get approved more will get approved quickly. And with money backing and large (sadly) mainstream companies backing with up to 50 million dollars I can't see anything holding these up. I will be taking them.

Bobbie
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Re: IMPORTANT NOTICE

Postby Bobbie » Sun Feb 08, 2015 1:35 am

Yes, everyone is now on "the bandwagon." Finally c diff is popular. Probably because it has become so prevalent it is now a money maker.

The capsule I referred to is taken orally. I still don't have any more details.

Too bad we live so far apart or we could have that party - with pizza, multiple desserts, beer, and wine! Lots of all!

beth22
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Re: IMPORTANT NOTICE

Postby beth22 » Sun Feb 08, 2015 3:51 am

I'll believe it when I see it. Hopefully the FDA won't hold things up.

seekingcure
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Re: IMPORTANT NOTICE

Postby seekingcure » Sun Feb 08, 2015 4:09 am

I just hope the cost won't be prohibitive.
Bea


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