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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Yet another vancomycin success story


#1

Hello everyone,

By now you’ve probably heard of vancomycin success stories umpteen times. Here’s another one.

If you haven’t read the topic I posted in March of this year, here’s a recap. I live in Sweden and have (asymptomatic) PSC + Crohn’s disease. I havn’t been able to find a doctor in Europe that’s willing to prescribe vanco, so I wrote a post on this forum. Thanks to your recommendations, a month ago I headed to the Mayo Clinic in Phoenix for a second opinion, where I was able to get a prescription for 250 mg vancomycin (Firvanq) 4 times a day.

My ALP, GGT, ALAT and ASAT have consistently been elevated, since I originally was suspected of having PSC. On the other hand, all other blood tests have consistently been normal. Right before I started vancomycin, my LFT:s were no different than what they usually were:

ALP 244 U/L (normal: <115 U/L)
GGT 136 U/L (normal: <61 U/L)
ALAT 93 U/L (normal: <55 U/L)
ASAT 75 U/L (normal: <48 U/L)

A month later (i.e. today), I had another blood work done and the results were:

ALP 144 U/L (normal: <115 U/L) [-41%]
GGT 44 U/L (normal: <84 U/L) [-68%]
ALAT 41 U/L (normal: <66 U/L) [-56%]
ASAT 35 U/L (normal: <46 U/L) [-53%]

To be fair, my LFT:s are not yet fully normal (since my ALP is about 25% higher than the upper normal limit). I’ve only been taking vanco for 1 month, hopefully my ALP will drop to normal levels untill my next blood test. Otherwise I’m going to need to increase the dose (since I’m only taking 1 gram per day).

Thanks for all the help,

Andreas


#2

Andreas, Im so happy to hear these news:). Give it one or two more months on the current dose, hopefully the ALP will normalize as well. In my daughter’s case, it took 2 months for the LFTs to normalize.

Best of luck,
Daniela


#3

Thanks for the encouragement Daniela! I’m hoping for the best. :slight_smile:


#4

Great news.
Btw, do you need to travel to US every 6 months or something like that (in order to keep enough Vanco).


#5

Legally I can only bring a 3 month supply of medications into Sweden, so I have to travel across the Atlantic 4 times a year to buy vanco. I’m trying to find a willing doctor closer to me, but this works for now atleast. The problem for me isn’t the travel, it’s the cost. I pay about half my salary for health care, all the travel and vanco. This is the major drawback with living in a country with a public health care system.


#6

This is wonderful news for you! Very encouraging! I have yet to find a Dr. in San Diego that will prescribe Vanco and I have been considering being persistent with my current Dr by sending her as much info as I can on it. If not, Phoenix is an option as well. Thank you for sharing this information. Best of luck and I pray it keeps going well for you!


#7

Thanks! :smiley:

Unfortunatly, I haven’t heard of any doctor close to San Diego that’s willing to prescribe vanco. If you want to persue the vanco-treatment, you’ll probably atleast need to travel to Stanford or Mayo.

I highly recommend visiting Mayo in Phoenix. Everything was totally hassle-free there. My doctor was in fact shocked that other doctors are reluctant to prescribe vanco. But be ware that you’ll probably still need to argue with the doctor and project yourself as a very firm believer of vanco, in order to get a prescription.


#8

Great news! Must feel fantastic (and an economic catastrophy!)
Why are they not willing to prescribe it?
Is it due to not being researched enough or the cost?
May I screenshot your story and post it on the Facebookpage for autoimmune liver disease in Norway?
There is going to be a conference in September, maybe someone could raise awareness.


#9

Haha yes, it’s both great news and an economic meltdown! :laughing:

The reason for why it’s so hard to get a vanco-prescription is simply because most doctors that treat PSC don’t know enough about the available treatments. After all, PSC is rare and doctors generally don’t have time to learn about diseases that only a couple of their patients have. My doctor in Sweden told me he has 5000 patients, so it’s not strange that he doesn’t know much about PSC.

In my experience, the doctors who say that vanco isn’t researched enough are those who don’t know anything about the vanco-treatment.

Sure, go ahead! I posted my story on a Swedish PSC-page, but hardly anyone seemed interested about vanco, which was strange. Maybe people trust their doctors too much.


#10

If you want to join the norw. Group, it’s “forening for autoimmune leversykdommer”.
I just posted and they are commenting that your values were quite low to begin with?


#11

My LFT:s were about 2 times higher than the upper normal limit. So they were fairly elevated, but it’s true that a lot of PSC-patients have higher LFT:s. PSC-patients with a lot of involvement in their extrahepatic bile ducts generally experience higher LFT:s. I only have PSC in my intrahepatic bile ducts.

I’ve sent a request to join the group! :slightly_smiling_face:


#12

Andreas, This is such fantastic news!!!


#13

Hope you don’t mind writing on that thread of yours Andreas but I’d like to give some more good news about vancomycin:

This article is only about 3 people but all of them went in “sustained and deep remissions” and what matters most is that it will be published in the serious European Journal of Gastroenterology & Hepatology in October.
Seeing how much problems you and other europeans patients had when trying to ask your doctor to test Vancomycin, this might be a step in the good direction!


#14

Hello! Yeah, that’s yet another article about vanco and PSC. Too be frank though, I don’t see this article giving any type of impact. There are multiple other articles in better journals, but no one still cares. The problem is not the research, the problem is that no doctor wants to be taught medicine by their patients. Doctors don’t have time to research PSC and big pharma ain’t advertising vanco, therefor very few doctors know about the vanco treatment.


#15

I just want to add that my faecal calprotectin has dropped by 90%, from 550 to 50, since I started vanco. So there might be something to it. I’ve never had a normal faecal calprotectin ever before (and I’ve had Crohn’s for a third of my life).


#16

This is the first I’ve heard of faecal calprotectin. How is this tested?
Many thanks,
Susan


#17

Hello Susan! Faecal calprotectin is the stool test you usually take when you have IBD. :slight_smile:


#18

Thank you!!


#19

Hello everyone!

I just wanted to give a quick update after 3 months on vancomycin. I’ve just done a blood test and my LFT:s are pretty much normal now:

ALP 120 U/L (normal: <115 U/L)
GGT 57 U/L (normal: <84 U/L)
ALAT 39 U/L (normal: <66 U/L)
ASAT 37 U/L (normal: <46 U/L)

Thank you all for the help! Without this forum, I wouldn’t have found out about vanco! :grinning:


#20

Great News Andreas,
These numbers look pretty good for a PSC patient. I hope things continue to do well for you!

Mark