Yet another vancomycin success story

General
41

You can be calm Susan. Chewing ANI vanco probably makes zero difference, but you should always use the drug as intended, unless otherwise recommended by your doctor. :slight_smile:

42

That gave me a good laugh.
My doctors are telling me zero.

43

Hi Andreas,

Congratulations on normalization of your biochemical markers. I was curious to see if you have had any MRCPs, ERCPs, or similar tests, before and after starting Vanco, and whether you have seen any improvement regarding imaging of the bile ducts.

44

Hi Steve! :slight_smile: Nope, I haven’t had any imaging done yet. I’ll update this thread once I do.

45

Hi there,

Re your question, our experience might be of help - see below:

My daughter was diagnosed in 2013 (13years old) with PSC (Stage 2 through liver biopsy) and UC (through colonoscopy). We started oral Vanco (IV formulation dissolved into water) in 2014, 500mg, 3x per day. Inflammation and LFTs (apart from the AlkPhos which was increased most likely due to the age factor) markers normalized. For the past 4 years she has been on the reduced dose of 500mg, 2x per day.

  • 2015, she had increased liver stiffness 19.5KPa (Fibroscan) and multiple strictures into the intrahepatic biliary ducts (MRCP), no colonoscopy.

  • 2016, no Fibroscan, multiple strictures into the intrahepatic biliary ducts (MRCP), no colonoscopy, all of the inflammation and LFTs (apart from the AlkPhos) markers normal.

  • 2017, liver stiffness 6.4kPa (Fibroscan) and mild beading (strictures) (MRCP), no colonoscopy, all of the inflammation and LFTs (apart from the AlkPhos) markers normal.

  • 2018, liver stiffness 6.8kPa (Fibroscan) and mild beading (strictures) (MRCP), no colonoscopy, all of the inflammation and LFTs (apart from the AlkPhos) markers normal

  • 2019, liver stiffness 6.1kPa - normal (Fibroscan), no strictures of the intra and extra hepatic biliary ducts - normal (MRCP), normal colonoscopy (appearance) and no active UC (histological), all of the inflammation and LFTs (including AlkPhos) markers normal.

Daniela

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46

Hi Steve! I just wanted to tell that I have done my annual MRCP and it showed no progression of my PSC (i.e. it was identical to before I started taking vanco). But keep in mind that it has only gone one year since I started taking vanco, so this might just be a coincidence. In order to determine whether this treatment works for me, I’m going to need to wait several years and hope it doesn’t progress. :grinning:

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47

Hi guys! For anyone interested, I’m still going strong. Normal LFTs, normal Fibroscan and no progression on MRCP. :grinning:

The main strugle for me has not been the mediciation, but rather obtaining and paying for it. I’ve got some months of medication from local doctors, but otherwise I’ve been getting prescriptions from my Mayo Clinic doctor. I’ve been paying about 1/3 of my salary for medication since I’m from Sweden (we’re out of luck here if we get a rare disease, since we don’t have insurances). Hopefully I’ll find some solution for this soon. :slightly_smiling_face:

2 Likes
48

Andreas,
I am glad things are going well for you.
Jeff

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49

Hi everyone,
I was wondering if anyone is from Australia and if you have tried or even been able to get Vanco here.

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50

Bron, there are quite a few people here from Australia, but I can’t speak for their experience with Vance.

Folks from down under?

51

Hi Bron
Our experience is that the public health risk of having potential antibiotic resistance develop outweighs the benefits to individuals, in most hospitals decision making process in Australia. Also the lack of evidence (on a larger scale) mean it is very difficult.
It is particularly tricky to get continuous prescriptions. I have heard it’s possible in some states. Happy to chat more if you like.

52

Hi Bron! Unfortunatly I havn’t heard of anyone getting continues prescriptions outside of the US. I think this might be due to the PSC expertise residing within USA. I’ve continuesly been trying to convince local doctors in Sweden to prescribe it to me without luck. :confused:

53

Karolinska institute in Sweden had Vanco PSC trial few years ago. I wonder if you tried contacting those doctors.

https://www.clinicaltrialsregister.eu/ctr-search/search?query=eudract_number:2009-018034-11

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54

Hi Ted! Thank you for your help! I actually go to Karolinska, but that study is for children, and the “adult” doctors are really against vanco unfortunatly. They’re basically saying to me that they wouldn’t prescribe it even if it completely stopped my PSC progression. :frowning_face:

55

Thanks for your reply Andrea

56

Thank you for the information, if there is an antibiotic resistance build up. Then they won’t prescribe it to me anyway :slightly_frowning_face:

57

Your information was very helpful, thanks

58

Hi Bron! The anti-antibiotics movement in many countries have unfortunatly made doctors afraid to prescribe antibiotics to seriously ill patients. The real antibiotics issue today is within agriculture, not at the pharmacy. :confused:

59

Andreas, sorry to hear about vanco opposition there. It is really weird that almost all countries outside of US are so hostile to it. I grew up short ferry trip away from you but moved to US after uni…so I’m very familiar with the health care systems there and in the US…

Hope you can a find long-term solution near you.

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60

Thank you very much for the support Ted! Merry Christmas! :slight_smile: :christmas_tree: