So Kabi IS available?? Did you see my other post about Kabi?
Thank you for the thoughts above. You’re so so kind and giving. I’m alone in my life (no spouse, no children), trying to figure it all out myself, so your support is so much appreciated.
Hi Susan. Kabi IV powder form is available in Europe (still). The formulation that we get is manufactured in Denmark. JTB has some posts (in the ‘Vancomycin general’ or something like that, thread on this site) about the best oral Vanco generic formulations (pills) which are available in US. JTB is very knowledgeable and experienced re the Vanco treatment. He really helped me with taking decisions…
And Susan, please do not think you are alone, we are here with you in your journey. When my daughter was diagnosed , she was 12 years old…I felt back then that our life as we knew it, ended. It was indeed a very hard and long journey but it is just part of being human I think…And human means tough life but love as well, and that got me though the whole thing. I know it sounds cliche, but it’s true and real…Wishing you all the best, shout when you need us:hugs:.
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Susan, I forgot to mention that JTB had some experience with the IV powder before and then he switched to pills. He also mentioned in one of his posts (if my memory didn’t fail me 
) the difference in price between them in the US. It’s worth asking him directly, I think he knows the US system quite well wrt to the OV.
JTB…no pressure:).
All the best wishes Susan. Daniela
PS. JTB, thanks very much again for all of the info posted to date on this site, it helped me a lot.
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Thanks so. Got to find JTB…
Tears. Thank you, DB1.
Well, I’m not sure about whether the drug orally will cross the barrier. You have dysplasia, right? I don’t think it’d affect you since it doesn’t cross the membrane, especially since it sounds like your on the road to removing your colon? At least when I got mine removed, I had at least the lower section of my colon have dysplasia and ‘pipe colon’.
From what I gather, medication absorption depends on type, even orally. If it’s not coated and it’s not long lasting (or delayed release) it’s not absorbed by the large intestine. As long as your small intestine is fine, it’s most absorbed in the small intestine. That’s why it’s not usable for ileosomates if it’s coated. No absorption in the si
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I was recently diagnosed so all this is new to me. is Vanco a cure or only in some cases? is your daughter off the medication now or is this something she will have to continuously take forever? just curious, I dont have an appointment with my doctor yet, but I am thinking about mentioning this to him since the first time he told me there were no medication options that would help me, even though i dont have inflammation yet.
Hi Vasni,
Oral Vancomycin (OV) worked quite well for my daughter. She was diagnosed in 2013 with PSC (stage 2 through liver biopsy) and UC (through colonoscopy). In 2014 she started OV per Stanford protocol (500mg three times per day). Her LFTs and the other inflammatory markers normalized within 2 months of OV treatment. The MRCP scan (scan of the liver and billiary ducts) in 2015 showed mild inflamation of the billiary ducts, however the Fibroscan (which measures the stiffness of the liver or the level of scarring of the liver) showed that her liver presented an advanced level of scarring (border cirrhosis). We continued the OV treatment (with 500mg twice per day) and in 2017, the MRCP showed very mild inflammation of the billiary ducts and the Fibroscan showed a normal liver now. Definitely the scarring of her liver reversed, no symptoms of the PSC and UC. Her LFTs are completely normal, she is living a perfectly normal life. No side effects from the OV treatment since 2014. Vanco is not a cure, it just keeps the PSC ( and UC in her case) in control. She will be staying on the OV until a cure for this PSC will be discovered (hopefully).
From reading journal papers, if the OV treatment is stopped, the disease (s) (PSC and UC in her case) come back with a vengeance.
Im attaching some research papers on the study of the effect of the OV treatment on the PSC+UC and PSC (only) for children and adults (it is uploaded under the ‘Articles and Research’ topic). Hope they will be of help.
All the best,
Daniela
How old was your daughter when diagnosed? And does she follow a special diet in hand with medication or does she eat just about anything? does she consume alcohol?
Thank you for your help.
My daughter was 13 yrs old when she was diagnosed. She is 17 years old now. No special diet, she also takes probiotics, Vit D and Omega 3.
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…and no alcohol:slight_smile:
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Thanks AutoimmunetoStars,
I didn’t realize until this morning I had been bumped off this page so just saw this. (Had to sign back in.) I’ve no plans to have my colon removed. If the repeat colonoscopy in a few months shows worsening dysplasia throughout my colon I’ll have to reassess. I began the OV (CutisPharma) five days ago and so far definite positive effects on my digestion and stools. So, I’m hopeful.
My daughter has been on 2000mg per day for 6 years. No side effects. I believe the post that this is more likely with IV administration is correct. Oral vancomycin isn’t absorbed systemically.