Apparently he has retired from Stanford / Lucile Packard. Does anyone know if he is still seeing patients or consulting on PSC / Oral Vanco? Thanks!
Eric
Hi Eric,
Dr.Cox is semi-retired and still responding to his older patients but not taking in new patients apparently AFAIK. We tried to reach him out in many ways but unsuccessful to get to him. Currently we are seeing Dr.Davies in Sacramento and she talks to Dr.Cox every other week on various medical matters. Hope this helps.
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Thanks so much! Is she continuing his practice of administering oral vanco? If so, do you happen to know if she is seeing similar success? Thanks again!!
Eric,
Yes, Dr.Davies will prescribe only oral vanco for any PSC patients and she has several patients across US who are really doing well with many success stories. But for my son even though he is doing well (physically strong, more energy, grew 2-3 inches of height, abdomen distention went away) on Vanco regimen under Dr.Davies, his LFT’s haven’t normalized yet even after 6+ months on vanco (3 months of vanco ANI capsules + 3 months of liquid vanco from ANI capsules).
Our’s seems to be a complicated case as my son was misdiagnosed with wilson’s disease last year after liver biopsy and later changed to ASC after MRCP early this year. He is not responding well to either to urso or vanco treatment. So our diagnosis is still up in the air and working with Dr.Davies to investigate further.
As mentioned, I believe Dr Cox is not taking on new patients. I emailed earlier this year and got a response (either from Dr Cox or one of his team) but I was asking for information, not an appointment. We are in Australia, so I think they felt sure we weren’t after an appointment.
Vanco is not generally prescribed in Australia, due to concerns of antibiotic resistant “superbugs” developing. After several years, my son is now on short term Vanco. It gets prescribed for 6-8 weeks, his numbers normalise, he finishes the script, his numbers go up. Then we apply again for special permission for another prescription. It’s not ideal and is very stressful (for me!) but I figure any amount of time with normal blood work is better than none.
I was initially very worried reading these forums and not being able not access Vanco. I felt like I was failing to do the best for my child. Please don’t feel like this. Focus on the positives; let them go to school/play sport/have fun. Control what you have control over.
Sl13, you mentioned ASC diagnosis for your son. When first diagnosed they were unsure if he had ASC or PSC. Treating it as ASC initially, my son’s numbers almost normalised (from in the 900s to 250) on mercaptapurine and Budesonide (steroid like prednisolone but with less side effects). Not sure what else you have tried, but these may be other options to consider with your doctor.
Hi @Westcoaster
I am really glad your son is doing well on Vanco and hope you get continued access going forward.
Before vanco, my son was on prednisone for 7+ months during wilson’s diagnosis and continued during the ASC/PSC diagnosis. He became not only chubby, put on alot of weight, but also started having alot of hair all over the body/forehead/neck and also developing some facial hair at 6 years old. Our earlier doc insisted to continue on prednisone and not stop/wean off until further notice. During this time we were also on urso + azathioprine for few months after ASC/PSC diagnosis. While the numbers dropped a bit they didn’t normalize and that’s when we switched to vanco.
At this time we are waiting on Dr.Davies to investigate further and hopefully collaborate with Dr.Cox. keeping fingers crossed.
Dr. Cox continues to see my daughter who has been a patient for 7 years. I do not recommend not staying on vancomycin or at least a maintenance dose. There are docs in Australia who are prescribing. I have a name Dr. Richard Muir, Wesley Paediatric Specialist Suites, Level 2, Wesley Hospital, 451 Coronation Dr, Auchenflower QLD 4066, Australia
Also you might email Mel at melissacomerford@icloud.com whose daughter has been treated in Australia for years.
Thanks Cactus Girl. I’m aware that it’s not ideal to be stopping and starting meds. That’s all that is possible at present where we live.
Thanks for the info on Richard Muir. He is 4500kms away from where we live (Australia is a big place!), but we could potentially go for an apt if we don’t get longer term prescriptions from our current specialist.
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I would contact him first. If you need help let me know
I just want to pipe in and share… After a year and a half on Vancomycin… it took this long for it to begin to work… not only are my liver enzymes almost normal but an MRE done two weeks ago brought back incredible news that I am no longer at stage 3/4. They see very little fibrosis and think I’ve gone back to an earlier stage. I am 64 and was diagnosed in 1991. Until now the disease has gone from stage one to stage two to stage three but it is now reversing!!
Best of care to all,
Susan
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Susan,
Thanks for updating us. I’m glad to hear that you are doing so much better. Very thankful and trust things will remain stable for you. Wishing you our very best and trust you have a wonderful Thanksgiving and Christmas with your family and friends.
Mark
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Thank you Mark.
It’s beyond a miracle.
And I’m experiencing quite a bit of cognitive dissonance after almost three decades of this disease progressing and my waiting for complications to worsen and the transplant axe to fall. I don’t know how to change my headset!
Best of care to you and yours as well.
Susan
Hi Susan! That’s great news, especially since you’ve had quite late stage PSC! I am really happy for you! 
/ Andreas
Great to hear. I’m glad you kept your faith in Vanco and thank you for sharing your updates. This is very interesting and very helpful for other people considering Vanco.
I remember when you joined the Vanco discussion long time ago. I’m so happy for you that it is working.
Special thanks for this great community!
Yeepee:). Very well done. Patience paid off, Susan.
Im so happy for you.
My best wishes,
Daniela
I’m hoping.
Thank you, dear Daniela!
Just FYI…I emailed Dr. Cox this week for a referral and he responded immediately.