After reading many of your PSC concerns and situations, I've decided to share with you some of my experiences and results of taking Vancomycin. Without going into too much detail, I will summarize some of my experiences prior to my Transplant in 2010. I was diagnosed with Small Bile Duct (PSC) in 1999 and was asymtomatic until Nov 2002. I had been experiencing alot of fatigue for quite a while and then I started itching in Nov. 2002 which progressed to a unlivable state in 2006 when the itching became 24-7 along with sensations of pins and needles, bugs crawling and the deep ongoing itching. Please note too my liver labs always seemed normal except for alka phos which was consistently around 165) I also began reacting to almost all foods and medications and it was all related to the PSC disease. I saw a liver dr. in June 2007 and when the itching became intolerable I was given Plasma apheresis until July 2010 when I received my transplant. Approximately 5 months later the PSC returned but I did not know it as my labs were normal except for a slight increase in Alpha Phos.but I was experiencing extreme fatigue which I thought was from my immunosuppressant drugs... But when I began itching in Jan. 2013 which was the same sensations as the disease I put 2 and 2 together and was able to request and receive an MRI and liver biopsy in June 2013 which confirmed that I had reoccurence of PSC. I decided to ask this support group for help and someone mentioned how vancomycin had helped mainly children with this disease. After further research and many requests and providing my history to UCSF they decided to let me give it a try as my itching was becoming unbearable again. I started taking this Vanco in Sept 2013 but did not see significant results until Jan. 2014. Unfortunately I became extremely ill (not from the Vanco) and was unable to take Vancomycin for several days. Per Dr. Cox he indicated that if you stop taking Vanco the disease will return and it did up until about a week ago I started getting more breaks from itching. This could be as a result of my age 65, not sure though. Anyway I don't want to get too excited at this juncture as this dang disease has its own agenda. But I will keep you all posted and I can't thank you enough for sharing this information re. Vancomycin with me...So far it has been truly a life saver. And I hope you are not too frightened by my experiences as most patients from what I am told have not had this kind of ordeal as they (UCSF)said I was the worst case scenerio they've ever seen with this horrific itching. My only wish is that this will give you all some hope.
My daughter was just diagnosed with psc two months ago after being misdiagnosed with AIH. She was weaned off of prednisone 3 months ago and started on vancomycin. It truly has been a miracle! We just saw her doctor yesterday and all of her numbers are perfect. She hasn’t been looking and feeling this good for 1 1/2 years.
We have tried and tried to get my hubby's doctor to try it on him and he still refuses. He has already had 1 transplant and is close to needing another one already. Keep us posted on how you do on it. Hope you do GREAT!
How bad was her liver before she started the vanc?
Shellie said:
My daughter was just diagnosed with psc two months ago after being misdiagnosed with AIH. She was weaned off of prednisone 3 months ago and started on vancomycin. It truly has been a miracle! We just saw her doctor yesterday and all of her numbers are perfect. She hasn't been looking and feeling this good for 1 1/2 years.
I love to hear successful Vanco stories! My husband had his liver transplant 2 days before his 27th birthday.7 years later the PSC came back & he needed an external biliary drain. G-d’s hand somehow led me to find info online about Dr.Cox’s treatment of PSC with Vancomycin. Amazing!
My husband has been on the Vanco for 6 months. He feels great: able to work full time,play softball,etc. His bilirubin is normal,however his other liver enzymes are still elevated. His GI symptoms improved immediately on the Vanco & the PSC is definitely not getting worse. Although we’d love to see normsl labs,it seems like the vanco is keeping things stable. And stable is a very underrated word! **** All PSC patients, Please get on Vancomyin,it is our best hope for a cure 
Thanks for sharing. I am pleased to hear that there are docs at UCSF that will prescribe vanco. I was under the impression they were opposed. Was it difficult to convince them to let you give it a try? My son is on vanco - now just 500mg once a day, and his numbers have been hovering around normal for months now.
Folks who are taking vanco, please take the time to fill out the PSC Partners patient registry. It may turn out to be helpful for those who are trying to get their docs to let them try vanco.
Thanks!!
Can you please supply the link to PSC Partners Registry. We need to get all docs & PSC patients informed about Vanco!! Thanks!
PLEASE inform UAB in Birmingham, Al USA about Oral Vanc. All they can do is scream about risks of MRSA with it long term. My hubby was recently in the hospital at UAB. He had septic shock and they thought he had C-diff. They put him on IV vanc and oral vanc both plus high doses of steroids and other IV antibotics. He is doing so much better BUT they stopped all of the meds now. I am so scared he'll get real sick again... =(
You should contact Dr. Kenneth Cox at Stanford University. Dr. Cox is the amazing doctor who found Vanco to help PSC & has done multiple trials to show it works! (All articles are available online. Google it) Perhaps he can speak to your doctor…keep fighting! Some doctors just don’t like to try new things!
I did. He said my hubby's doctor should call him. Hubby's doctor refused to. =/
Aaaahhhh! So frustrating! Would you consider being part of Dr. Cox’s clinical trial to get the Vanco or switching docs to someone more open minded?
https://pscpartners.patientcrossroads.org/
For the patient registry.
Please enroll!!
Yes it was very difficult to convince them as the Dr. I saw in July 2013 was screaming at me that I will die because it will make all other antibiotics ineffective for whatever infection I may have. All I could do was send them a letter explaining in detail what I went thru prior to the transplant as I could not live thru that ever again as it was worse than dying. They met with my before transplant doctor and the head liver clinic doctor and he said let's give it a try.I'm taking 1500 mg's per day as it was not effective when I lowered the dosage. I'm so happy for you and your son that they are letting him take Vanco. I almost forgot to tell you my nurse from UCSF said they are now prescribing this drug for other post transplanted patients, which I was very pleased to hear.
mom to psc teen said:
Thanks for sharing. I am pleased to hear that there are docs at UCSF that will prescribe vanco. I was under the impression they were opposed. Was it difficult to convince them to let you give it a try? My son is on vanco - now just 500mg once a day, and his numbers have been hovering around normal for months now.
Folks who are taking vanco, please take the time to fill out the PSC Partners patient registry. It may turn out to be helpful for those who are trying to get their docs to let them try vanco.
Thanks!!
I am truly so happy for you both. It appears to go right to the source of the disease. Good luck on her continuation of Vanco.
Shellie said:
My daughter was just diagnosed with psc two months ago after being misdiagnosed with AIH. She was weaned off of prednisone 3 months ago and started on vancomycin. It truly has been a miracle! We just saw her doctor yesterday and all of her numbers are perfect. She hasn't been looking and feeling this good for 1 1/2 years.
Thanks for your good wishes and yes I will continue to keep you all updated from time to time. Maybe your husband can write a detailed letter to the head doctors and make a compassionate plea for relief from this terrible disease.I wish you both good luck in successfully getting the right treatment.
Sonia96 said:
We have tried and tried to get my hubby's doctor to try it on him and he still refuses. He has already had 1 transplant and is close to needing another one already. Keep us posted on how you do on it. Hope you do GREAT!
hi
Don't want to take away from you husbands new least on life but vancomycin is not a cure just a control ,,,once off the meds the diease is back,,,i am so glad that your life has inproved,,, thats all we ever want,,,keep doing what works to keep things stable,,,,i gues s
we could call it the next best thing to a cure...all the best,,,,,
Recurrent PSC said:
I love to hear successful Vanco stories! My husband had his liver transplant 2 days before his 27th birthday.7 years later the PSC came back & he needed an external biliary drain. G-d's hand somehow led me to find info online about Dr.Cox's treatment of PSC with Vancomycin. Amazing!
My husband has been on the Vanco for 6 months. He feels great: able to work full time,play softball,etc. His bilirubin is normal,however his other liver enzymes are still elevated. His GI symptoms improved immediately on the Vanco & the PSC is definitely not getting worse. Although we'd love to see normsl labs,it seems like the vanco is keeping things stable. And stable is a very underrated word! **** All PSC patients, Please get on Vancomyin,it is our best hope for a cure :)
Thank you for your comments Steven. Yes the pruitis was indeed frightening. And I did have a lot of trouble trying to find a doctor that could help me especially since my labs were almost normal. Fortunately I was able to find a Dr at ucsf who truly did want to help. Anyway will keep you all updated periodically.