After thirty years with PSC and a year and a half on Vancomycin, for the first time all my liver enzymes are NORMAL

It’s working.
Love to everyone who helped and encouraged me.
Susan

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It is so nice to hear great news!! Keep staying healthy!!
God bless

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Wow, that’s amazing! What type of vanco are you taking?

ANI.

But they have apparently changed the formula this summer so there is a question whether it will continue helping me and others.

That’s great! I was on oral Vanco for 3 years. It stabilized me and allowed me to live a normal life. Had I not had other health issues, I might have been able to avoid a transplant with it…

What other health issues?

If it stabilized you what happened??

Thanks so ahead for explaining!!

Feel free to write me privately.

Best of care,

Susan

Hi Susan,
I really wanted to send you a note to tell you that I am very happy for you and congratulations on the ‘Normalization’ from someone who can relate to that relief - and I’m thinking my relief would be less profound than yours as my situation is different and less severe in some ways. I recall reading your disappointment when you didn’t respond at first, felt your pain there too, good for you for sticking with it. Such a reponse after such a long time with PSC is very encouraging, and is very educational to our community - if not the medical community who we have a hard time acknowledging even scientific evidence connected to this drug. As for me, I have now been diagnosed twice with recurrent PSC in transplanted liver, both times started Vanco quickly (before enough liver damage to confirm diagnosis), quickly normalized LFT’s and eliminated pruritus. The recurrence of rPSC (rrPSC - I might be the first patient with such ;)) happened after stopping Vanco the first time to see how long/if a reflare of abnormal LFT’s. In cruise mode now at 1000mg day of Sandoz - soon to scale down further to 500 day. I don’t want to get overconfident - but I think I’ve got this. To be fair, I’m no case study, because in both cases of normalization I cannot completely attribute to vanco as my LFT’s were trending down at both times (the first time because I was represcribed URSO) so there is still doubt that I had rPSC at all and it was not just a transient both times (bad shrimp or something). However, the ‘transient’ was over a year length this last time, and the pruritus - which is only connected to cholestatic disease (I think) - went away within 3 months at each of my two Vanco experiments. So I’m personally confident enough about the likelyhood of a cause and effect to take the maintenance dose forever. Anyway, be well ma’am - show this thing whose boss. RJM

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RJM,
I just this morning saw your reply from some weeks ago. This website is not notifying me when people respond to my posts. I’m so sorry for your rPSC and then again rrPSC. I can’t imagine having what it takes to face one liver transplant, no less two. You are a much stronger person than I. Thank you for your kind thoughts to me. I had an MRCP this week and am anxiously waiting on my liver specialist telling me if he sees any improvement in my biliary tract. I also had blood work done this past week, three weeks after the normalization of my liver enzymes, AK was a bit high, although nowhere near what it has been all these years. GGTP was also quite a bit higher. So, still too soon to know how this will all evolve although I am unequivocally feeling much much better. An example is for the past thirty years I’ve slept until past 11:00 each morning and this summer, I’ve been rising between 5:30 and 7:30. I am needing MUCH less sleep and being far far more productive during my waking hours. Yes, we will be taking a maintenance dose forever, both of us, or at least until something better comes along. Best of care, Susan

Susan,
I have adjusted your notification settings. You should start getting email notifications anytime someone replies to any of your posts or posts that you have replied to in anyone else’s posts. Let us know if this problem continues.

Mark

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Thank you!!

So, my liver enzymes are inching back up. Specialists in our disease I’ve been consulting with think it could be the fact the formula of ANI Vancomycin has been changed. The synergy they felt could be the reason ANI worked so well for many of us, is no longer inside these wildly expensive pills.

We are trying to figure out if I should switch brands, perhaps back to what I originally began with before I switched to ANI three years ago (Cutis Pharma).

What brands of Vancomycin are people here taking which are being successful for you or your loved ones?

Deepest gratitude, without this site I don’t know where I would be.

Susan, have you considered participating in the GS-9674 study? I am currently in the study, and while it’s too early to tell if it’s helping me, I have been hearing good things from the doctors and nurses involved in the study.

Steve,

How would I join the study?

Gratitude,

Susan

Hi Susan,

I sent you a message.

Hi, yeah, it may be a good idea to share recent vanco stories because of the rumor the formula might have changed…my daughter has been using ANI vanco (1000mg per day) for two years now, and so far, all of her LFTs are normal, have been holding steady since five weeks after she first starting taking it, and she just had her second fibroscan that showed that her liver is still completely normal, it healed from late stage fibrosis to normal on ANI. Whatever change ANI may or may not have made in their formula, it seems to have made no difference in my daughter’s case. I just picked up a new three month supply so will write again if this lot shows any change.

Hi everyone, first of all it was great to hear your news Susan. Hope everything is still going well for you on Vancomycin.

I am a new member and just wanted to ask if anyone here from Australia is taking vanco? My enzymes are continuing to climb and I wanted to know if anyone has been able to access vanco off-label through medicare? I understand it’s hard with authority restrictions, but just wondered if anyone knows if it can be done and the best way to make it happen.

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Moonbeam, there are quite a few Aussies on here, so I hope you get some good responses. Might be better though, to create a new post on the General post.
Jeff

There are patients on the PSC Partners and PSC Support facebook groups from Australia who take vanco. I can message you some leads in Brisbane if you are in that area. The following case report appears to be from Australia and all of the doctors from Melbourne: http://casereports.bmj.com/content/2017/bcr-2017-221165.full

Hi Moonbeam :wave: We’re Aussies.

It is very difficult to get Vanco here. Possible (but difficult) as a child. Haven’t heard of anyone diagnosed as an adult being able to access it. Those I know who have continuous access are paying privately for it.

The article linked was post transplant - I assume you’re wanting it to hopefully prevent transplant.

Happy to chat further. What state are you in? When were you diagnosed etc.

Thank you for your replies guys! I didn’t have privileges to create a new thread Jeff or I definitely would have - sorry for posting in here. jtb, I appreciate your suggestions. I’ll definitely check out the FB groups, and that case study was interesting. Nice to know it came out of Melbourne!

Westcoaster, thanks for that. Sad to hear it’s still difficult to access vanco. It’s unfortunate when it seems like such a safe option for a serious condition with little to no other treatment options.

I’m 29 y.o in Victoria and only had my diagnosis ‘confirmed’ last year. It had been present on my first MRI about 14 years ago and stable until recently though. I’m being investigated for overlap with AIH.