Yet another vancomycin success story

Andreas,
I’m glad to hear that you have had such a success with Vanco. I wish you many more years of stable improved health.

Mark

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Thanks a lot Mark! I wish the same for you. :slight_smile:

10+ flights, wow. I get it, though. I told each of my specialists who I asked for it (hepa, hema, endo, gastro, blah blah) that I WILL get this drug, or I WILL make it myself if necessary ( I sent one a screenshot from ‘Breaking Bad’ and told em it was me refining my process just in case). I have learned from you and others here, the European situation, also the humbling rarity of my good fortune (script, access, and insurance). For you and for all the others on your whole continent (!) is there no other option? I’m sure you’ve explored them; mail order, courier, get a drug mule, get bulk, a favour, some humanity, maybe use of Euro-local compounding pharmacies, US military base pharmacy, get script filled in CH or in UK? Certainly difficult if there are no such alternatives .

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I’m sorry to hear that you haven’t had any success yet with getting vanco! It’s crazy that it’s so hard to get a medication that is very safe, has a potential to literally save lives and isn’t a controlled substance…

Yes, I’ve been on 13 flights to be precise haha… :laughing: To be fair though, it’s only 2 trips but many layovers (due to less flights and last minute cancellations). Before covid, I could just fly to New York, arrive at noon and then take a 12 PM flight home the same day.

I think that people in the US generally believe that a public health care system works similar to the US system, but it’s very different. In the US, the doctor’s “customer” is the patient. In Europe, it’s the government. Therefor, there isn’t any benefit for a doctor in Europe to go out of their way to help a patient. For example, the doctors that make the most here are the ones seeing the most patient (since they generally receive money based on number of patients). The “high rollers” among doctors here are the GPs seeing patients for 5 minutes, not the highly specialized surgeons. :money_with_wings:

In my case, there’s literally no upside for a doctor to give me a vanco prescription, it’s just a bunch of downsides (prescribing antibiotics looks bad, it costs a lot of money, etc). If vanco was FDA approved however, I could legally force them to prescribe it to me.

Also, according to EU law, the only way to import prescription drugs are by literally carrying it yourself over the border (in a limited amount). That’s why it unfortunately can’t be sent through mail. However, for me it’s not a very big hassle to take some short trips to the US. The costs are the worst part for me… :frowning:

Hi Andreas,

Thanks for the reply. Actually I do get Vanco - I had my difficulties getting a Doctor to step up to it, but one did eventually and I’ve been on it since 2015 and I was immediately normalized for LFT’s and still am. I had very nacent recurrent PSC (transplant in 2012), so no long term effect on my transplant, it seems to have ‘healed’ . Indicating early use of Vanco in PSC is beneficial. Of course there is always the possibility I was misdiagnosed with rPSC or some other explanation - but I think the cause and effect is clear.

In the reply that I sent I was just shot gunning a few ideas/thoughts on some other alternative way for you, that I am sure you have explored. Forced to take the route like yours with that amount of travel is really unfortunate and I guess one of the many issues with Orphan treatments.

You obviously do your homework on this stuff, you might have seen the following, but I ran across it some time ago and remembered it now - I’ll attach it, its another European experience with obtaining Vanco for PSC. Maybe something helpful in it.
https://www.youtube.com/watch?v=so2mmYbgMgE

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That’s great to hear! I’m glad that you finally managed to get a prescription! :smiley:

Thanks for the support! Maybe the best option is to just befriend a doctor that I can convince to give me vanco! :sweat_smile:

Wondering how long it took you to normalize LFTs on Vanco? My 5 year old son has been on vanco about 4.5 months, making huge improvements from initial diagnosis (ALP normal, but has ticked up a little lately, AST normal and remaining flat over last 2-3 months, ALT has ticked up slightly over last month–just above normal, and GGT, while down significantly from nearly 500 at diagnosis has been flat the last 2 tests taken monthly at 80 and 79 so still approximately 3-4x normal from 20x normal at diagnosis). He is doing great, but we were hoping all tests would be within normal range at this point. Thanks!

Hi! It took me 2 months for my LFTs to normalize, but it looks like I had 5 times lower LFTs from the beginning compared to your son (so keep that in mind). I’m by no means an expert in this field, so I can’t really comment his numbers, but maybe they’ll eventually lower or the dose is too low?

Although my personal experience isn’t a useful comparison for a few reasons, I recall reading some accounts/data out there (maybe on this forum or in a couple of the dozen or so publications in the literature) that the LFTs can continue down for a long time, even years. I did a quick look up of this one https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5061664/ in Figure 1, the Vanco causes a sharp drop in first few months as the effect of the ‘attack’ on the liver is relieved by whatever mechanism and as a result it stops ‘screaming’ LFT’s, and then the LFT complaints calm down more over years as the liver heals. And maybe stops somewhere if the individual case has permanent damage. In Figure 1 here, you can see LFTs dropping for over 3 years. Hey as a parent I want to say it is such good news that he is doing well, best of luck. My advise is google search and read everything on this if you haven’t already - knowledge is power.

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a link with someone else’s experience wrt time for Vanco to work; in case you might not have seen this…

https://www.livingwithpsc.org/t/vancomycin-improves-fibroscan-score/4396/5?u=rjm

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Thanks! :slight_smile:

no probs, I expected it might also be of interest to STLBluejay in the question above - trying to gather experience in how long Vanco can take to show results. From the few posters on this forum that I’ve read, it seems that there can be a range of intervals before improvements show up - sometimes needing to switch brands to get there.

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Thanks for the information! My son continues to do great. We will be getting blood tests again later this month (which will be about 6.5 months) and I will report back.

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I sure hope people are still on this thread. I was diagnosed about 6 months ago after a Covid infection that put me in the hospital for 30 days. About 14 days intubated. I did not have any health problems prior to this, in fact on my annual physicals my lft were all normal for the last 30+ years. I’m now 65 years old with all the symptoms of psc, fatigue, itching, abdominal pain, change in stools, jaundice. I had two stents put in place at the Mayo Clinic which helped with itching and jaundice. Abdominal pain is all the time. Some days unbearable.
I asked about vancomycin, but was told I don’t need that at this point. I go back in two more weeks to have the stents removed and possible put one or two back in depending on what they see.
I’m going to press the desire to try vanco, but in the mean time I need something for abdominal pain. Any suggestions?
Thank you
Rodger

Roger,
Sorry to hear you are having such a rough time. I agree that you should press for the Vancomycian. I believe it helped me get my LFT’s to normalize at a time I needed that the most. I was on 125 mg 4 times a day. That may seem like a low dose but it did the trick for me. Are you seeing a transplant hepatologist that specializes in PSC? If not, I’d ask for another doctors opinion if they refuse to prescribe it.
Do you know what the source of the pain in your abdomen is? Did you have surgery there or is it just GI pain? Not sure what pain medication to suggest. You’ll need to defer to your doctor for that one. I hope you can get relief soon.

Mark

Thanks Mark

I believe it’s just GI pain, but it stays day after day. I see a lot of people say they have abdominal pain, but they don’t take anything for it? It seems to be associated with PSC. Just hard to understand what’s going on. I’m currently at the Mayo Clinic in Rochester MN seeing a hepatologist. I’m going to message him for Monday to see what he can do.
Thanks
Rodger

Hi Rodger! I’m sorry to hear about your problems! :frowning:

It’s hard to tell what’s causing your abdominal pain through text. It could just be symptoms of the PSC or another issue. Most people with PSC also have an inflammatory bowel disease (IBD), such as ulcerative colitis or Crohn’s disease.

Regarding vanco, many of us (including me) on this forum has had success with it. However, vanco isn’t something you can wait with. In the studies that have been done, it seems that vanco works best for people in early stages of the disease. Unfortunatly, as you might have seen in this thread and on this forum, it’s quite hard to get a prescription…

/ Andreas

Hi Andreas

Thanks for your comments. You might be right about UC. The hepatologist at Mayo did not mention that. I’ll have to inquire about that. I guess with UC you can have abdominal pain, right at and above the belly button.

Thanks
Rodger

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Rodger,
UC is known for causing abdominal pain, but luckily that was not one of my symptoms. Andreas is right-too many PSCer has or has had UC or another auto-immune disease.

Good luck with what you are dealing with.

Jeff

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Rodger,

Have you had a colonoscopy? Even without any UC/Crohn’s, all PCS’ers should be getting colonoscopies every 2-3 years because of the increased risk of colon cancer.