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Primary Sclerosing Cholangitis (PSC) - Online Support Group

My attempt with taking Vancomycin & needing help


#20

I will email him.
Thank you.
I live in the northeast and am too sick to travel to see these doctors in person.


#21

Blood work update after three weeks of increasing Vancomycin from 500 mg to 750 mg three times daily:
AST, ALT normal.
Alkaline Phosphatase is down to 136. It has hovered around 200 give or take for many years. Usually AST and ASL are also elevated.
I’m not sure it’s ever been so low.
I feel the same but nonetheless,
** It’s looking very hopeful!! **

Wanted to share for those considering taking Vancomycin. The lower dose (500 tid), helped my stools be formed (a miracle in and of itself), but didn’t change my liver enzymes in the almost six months I took it.

Love to all.


#22

Hi Susan,

So happy for you…it is working:). Patience now and hope. How is GamaGT?

All the best,
Daniela


#23

My GGT is usually normal, these years.
xo


#24

So, AK elevated again in recent liver enzymes. Sooooo disappointing. I asked my doctors to raise my Vancomycin to 1,000 mg 3 times a day and began that dose yesterday although I do feel I’m tempting fate taking such a high dose. Does anyone have experience with this high a dose? I told my doctors I wanted to follow the Cox protocol but not sure how wise that really is for someone 63 years old diagnosed almost thirty years ago. I was at stage three last liver biopsy (surgical, during surgery for another reason), almost ten years ago. Any thoughts would be much appreciated. I feel like I am a guinea pig. Maybe the only person in the world with PSC for so long taking Vancomycin for so long without knowing if it is healing my PSC – going into ninth month now – and praying it will work for my PSC as it seems to be with my UC. I am comforted by knowing IF it works, eventually, it will likely also work for others having this disease for a long time, just not in the three month time frame used in most of the studies thus far.


#25

Hi Susan. Sorry to hear that…How elevated ALKPhos was, and what about AST and ALT?
Please don’t panic, 750mg 3x daily worked before, ALT and AST normalized and ALKPhos also decreased as far as I remember. How is your fatigue level compared to before Vanco?


#26

Yes, you are remembering correctly! AST and ASL are still normal! ALK was up from its low of 137 on 750 mg after a month on 750 mg to 178 after two months, my normal range for ALK these years no matter. AST and ASL have only been periodically elevated for me over the decades, and bilirubin etc., has never been elevated. My platelets are always low. All I have to monitor is ALK and how I feel, and I feel much the same as always, a little different cognitively, in the sense I FEEL the gut/brain connection, and my UC feels (not confirmed however in colonoscopy six months ago), much improved. What is hard for me to understand in analyzing this is when I think back to those first years after being diagnosed (1991), at stage one. My ALK was 900 then. I’ve taken NO allopathic medications. I’ve been treating this with Chinese medicine, many herbs and supplements, over these past 25 years. After some years in stage one and two my ALK went down to the high hundreds where it has remained for these past twenty years. ALK reflects an inflammatory process in the liver. Wouldn’t this take a LONG time to resolve even if the Vancomycin were working??? Even though I’m in catastrophic care in medicare, this is still costing me many hundreds of dollars a month. In January it will go back up to $1,500. a month. Just feeling alone, in the dark, not knowing whether this makes sense for me to continue.
xo


#27

Susan, I’ve worked with Med D and pharmacy benefit management for 15+ years and what you’re saying doesn’t sound right. If you’re in castrophic care your cost shouldn’t be hundreds of dollars a month. Are you sure your pharmacy is running the claim correctly? Do you have supplemental insurance? If so is your pharmacy using that insurance as well? If you don’t have supplemental you may want to look into it.

azurelle


#28

Azurelle, Humana is paying 80 percent. Do I need to find another medicare pharmaceutical company for 2019? I do have supplemental as well (Medex), which is paying zero!! It cost about $5,000. a month with no insurance.


#29

Hi Susan. 25 years with PSC and UC and I think you are doing very well after all this time. Your body is quite strong and the holistic approach seemed to have slowed down progression. Just to say that you are wonderful and you have done a great job in dealing with these 2 conditions.
Have you increased to 1000 mg, 3x daily? Possibly, if you would hold on to the 750mg dose, 3x daily for a couple of more months and monitor the ALKPhos trend, then you will have a clearer idea of the efficacy of this dose.
Now, dropping off Vanco altogether will have a negative impact on your UC. Do you know what stage are you at with PSC?
Frank on this site has some experience in trying Vanco in the late stage of the disease (I don’t know if he had UC as well). You might want to get in contact with him for more details on that. He had a transplant recently and he is doing well.
Please do not give up hope, we are with you in your journey,

Best wishes,
Daniela


#30

Daniela,
Just home from a week in Downeast Maine and if I compare my sense of well being and lack therein from past vacations, I’m not worse and maybe even stronger, yes, you are right. Thank you so so much for your kind thoughtful words. I went up to 1,000 three times a day which I plan to continue until the end of 2018 before deciding what’s next. I DREAD returning to the UC symptoms as it was before. I will likely stay on Vancomycin at this dose for 6 months to a year and re-evaluate then. As I wrote to both Dr. Cox and Dr. Lindor two weeks ago when I was sharing my lack of progress with them both before deciding to go up to 1,000, having had this disease for so long they agreed it could take much longer for my liver to begin to heal.
Blessings to you and everyone,
Susan


#31

Hello again dear ones, I could use feedback and thoughts from wise experienced sisters and brothers…

My blood work done last Friday (November 16th), came back with my alkaline phosphatase higher than it’s been in years, my AST and ALT twice as high as normal (after being normal most of the last year since I began Vancomycin), and my GGTP crazy high. I’ve also been feeling truly terrible this past week.

I had gone up to 1,000 mg ANI Vanco three times a day. I’ve been on this highest dose for almost three months now.

I don’t know what to do. Continue with this same dose, drop back down, drop significantly down?
I am aware that many global studies of Vancomycin showed it worked better and was more successful at very low doses. I’ve also gotten to the point where I can no longer swallow pills so I am chewing the ANI Vanco and hoping that’s okay.

Any thoughts or advice will be greatly appreciated. Yes, my UC is virtually 100 percent improved so I cannot see stopping Vancomycin entirely.

I emailed my liver doctor at U.Mass Worcester today to share my recent blood work results (drawn here where I live, a couple hours drive from his practice), and tell him I want to titrate down.

Deepest gratitude,

Susan
Addendum. A friend asked me last night about the theory of bacterial backwash from the colon into the liver being one cause theorized for PSC and the idea behind why Vanco works. She wanted to know if people who have had their colons removed then heal from PSC. It would be wonderful if people who have had their colon removed with PSC might address this.


#32

Dear Susan,

I am sorry to hear that your numbers are getting high again.
Do you follow any particular diet?
In France, a book has had a certain success among auto immune disease sufferers: “l’alimentation où la troisieme medecine” written by Dr. Seignalet.
Basically you should get rid of gluten and milk and do not overheat food.
Since I started to follow this diet, i managed to maintain my numbers in a normal range.

Cheers

A


#33

Dear A., Thanks for this. I’m reading about this diet now. I have tried many different ways of eating all these past decades from gluten and dairy free to palio and unfortunately nothing thus far has altered the slow progression of this disease in my body. You are very lucky. Best of care, Susan


#34

Hi Susan - So sorry to hear about your numbers and the discouragement you are feeling. So hard to know what to do. Keep fighting and doing what you can. I recently started Vanco on a very low dose. My Dr at Scripps in San Diego did not want to give it to me until I sent her a bunch of information on it. She started me at 125 mg 4 x a day which I thought was odd given the Dr. Cox articles I sent her but said she wanted to see how I tolerated it first. I went with it just happy to get it at all. It lowered all of my numbers in a months time. This is very recent and I am curious to see how my next blood tests come out in a few months as I am starting to notice more symptoms like itching and my abdomen is protruding like my liver is more enlarged than usual and I can’t eat as much. Given my numbers going down I thought my symptoms would also. I will be having my colon removed early next year due to finding many SSA’s and polyps in my last colonoscopy so I am very curious if that will have a positive effect on my PSC. Please keep us updated on your journey.

Blessings,
Traci


#35

Hello Susan,

I am worry to hear that! I don’t know how to say this without seeming rude, but maybe vanco might not work for you since you have had PSC for a very long time? Usually vanco works best for people with early stage PSC. But at least you got rid of your UC symptoms, which is a victory in itself. :slight_smile:

Kind regards,

Andreas


#36

Hi Susan,

Sorry to hear that…Susan please do not get discouraged. What Vanco does, it alters the Microbiota , which plays a role in regulating the inflammatory response in the liver (generally speaking) . However nobody knows (yet) what is the optimum Microbiome composition to keep the inflammation at bay…
Vanco at lower dose worked for you before. There is no harm to ask your Dr. to go back to the previous dose. I understand your worries and I do admire your determination to fight this disease. Please pick yourself up again:) and continue to be strong…as you have always been:). All the best wishes,

Daniela


#37

Hi Susan,
I know you have tried a number of things to slow the progression of PSC. I think in all honestly what you are doing is providing a better quality of life to compensate for the progression of the diseased liver. As the livers inability to produce an adequate amount of bile increases and due to the strictures that form in the ducts from the disease prevent the bile from flowing to your gut, all this makes it harder and harder to process the foods we eat. The different diets you have tried have basically just been compensating for these changes, but never do they change the real progression of the disease. Do not be discouraged, but rather keep doing the best you can and we hope and pray when your time comes for a transplant that the perfect match will be found. Do not lose hope, but keep living life to its fullest! Good luck to you.

Mark


#38

Susan, I lost my large intestine in Dec. 2006. Was diagnosed with psc in April 2013 and transplanted in June 2017.

So I never “healed” from psc.

As you are soon to go through what I went through, I say not in an effort to scare you but to give an idea of what to expect. My recovery was a butt-kicker. The first month was very tough. It is hard enough recovering from a major abdominal surgery, but dealing with the bag was pretty traumatic for me. After the first month, my body started figuring out what was done to it and what to do about it. By the time I was finally getting used to the bag, it was time for the takedown.

So some of main the lessons I learned was to focus on the future and not get bogged down in the present. There will be bad days, but they make you appreciate the good days. Life with a j-pouch is not perfect, but it beats the disease that prompted it.


#39

Thank you, deeply, everyone.
More to follow once my too busy week eases some.