Hi guys,
Heading into my year appointment that has been pushed back until a year and a half. I am on oral vancomycin and being treated by dr Davies out of Sacramento. I guess the routine would be liver biopsy, colonoscopy then mri. I am kind of scared and I was wondering if you guys had any information to speak with my doctor. Or questions I should ask. I am only 19 and it’s hard for me to comprehend. Thank you. Have a grea day!
Hey Nick,
I agree with Stephen. Normal route for me would be bloodwork and then MRI/MRCP. I see a hep doc who will sit with me and go over past and existing changes I am experiencing, after she receives the results of my tests. If warranted, I am moved down the aisle to my GI doc who will determine if I am to schedule an ERCP. I see my hep doc every six months.
Hi,
My son is 18. His blood work was elevated
On his last check-up but they didn’t
Feel they needed to do any testing. If you
are symptom free & feeling ok I believe
they’ll just visit with you, ask you some
questions & do lab work. His rash was coming
back on his feet & I e-mailed his Dr.
& called his specialist but they didn’t
Think it was a concern. Do you have
Someone to accompany you? Take notes or ask questions?
I’m proud of you for being on here & reaching out.
I wish my son was.
Be honest with your Dr. No matter how nervous you might
be. Even the smallest detail could be an important detail.
Wishing you a stress free check up
With great news!
AJ
They’ve never told us what stage my son was in.
I’ve asked but they’ve never responded.
Are your LFTs down to normal? If not, ask if there are any changes to their Vanco protocol they'd recommend to try to get the numbers down.
If it hasn't been addressed, ask Dr. Davies to check for fat soluble vitamin levels and an order for a bone density scan.
Unless they are checking for improvements re: Vancomycin, a liver biopsy really isn't needed for PSC. I'd ask what's up with that order.
Everything is down to normal. I get blood work down every 3 months. With the liver biopsy they would be checking with improvements, I think....They want to see if the scarring has started to heal.I definitely will ask about those test. Thank you!
Hi Nick,
I would encourage you to be seeing a hepatologist if you are not already. Also, I would not settle for anything less than seeing them at least every 6 months. As my disease has progressed I am seeing my doctor every 3 months or sooner as needed. You've got to stay on top of this and not just "suffer through it". The very best to you and yours. I hope you are getting the very best of care you need.
I recommend labs to include a CA19-9 test. I'm not sure if that is standard for everyone with PSC. Its a bile duct cancer indicator. I was symptom free with my PSC and an elevated CA19-9 test was elevated and an MRI showed a turmor in the center of my liver. It is an agressive cancer that is fatal if not caught early. I was treated by radiation therapy, and then liver transplantation. That was 9 years ago.
Hi Nick my daughter is also seeing Dr. Davies. All I can say is that you are in good hands. I owe every bit of my daughters progress to Dr. Davies.
Yes I must say she is very good.
Hello all - Nick, glad to hear you have such a glowing report! CONGRATS! Shellie and nickbates, where is Dr. Davies?
Thanks!
Lilly
Lilly she is located in Sacramento, California.
Nick,
We just looking over some old posts and wondered how you are doing. How are your LFT's these days? Do you know what your current MELD score is? Also, were you able to get in with a hepatologist instead of just a GI doctor? Take care and keep in touch with the group.
Mark
PSC 2011 / Liver-Transplant 7-2015
Hi all,
Sorry I have been away for awhile. After my colonoscopy, it was discovered I had 2 ulcers in my stomach, but everything else seemed to have checked out okay. I really have a hard time with it still so I really let me mom help me with the numbers (bless her heart). Whenever I get to involved it involves sleepless nights as well.
My doctor (Dr. Davies) out of Sacramento, CA does not take her patients off the Vanco, I felt like starting vanco treatment so young would then require me to increase dosage if this is the lifetime treatment. So I recently went in to discuss dropping my dosage. We came to the conclusion that it might be worth it to drop my dosage from 1500mg a day (2 250mg pill 3 times a day) to 1000mg (2 250mg twice a day). But after realizing that with school and living away from my parents and doctor, I go to school in the bay area. That it would be better to stick with my current treatment.
Thank you checking in and I plan on spending more time on here helping my fellow PSCers.
Best wishes,
Nick
Great to hear Nick.
It seems that Oral Vanco has really helped you, if I understood the situation. Did you have elevated ALP liver test values before starting Vanco (and then normalized after Vanco)?
Yes Ted,
All liver test have normalized while on Vanco. I think that it would benefit the entire PSC and Vanco community by dropping my dose. This will help doctors understand if the liver becomes dependent of the drug or if the drug helps liver become self sufficient again.
Great to hear, save for your stomach, you are feeling well. I say go for it. I started at 1500mg/day and have dropped to a current daily dose of 500mg. I dropped 250mg at a time, gave it 3-4 months then checked LFTs to see if they were still normal before dropping again. I recommend changing one variable at a time so if you are dropping from 1500mg to 1000mg, try to take it 4 times a day for a couple months before changing the dosing schedule to 2 per day (if you take 500mg x 2/day and your numbers climb, you won't know if it was the total dose or the reduced dosing schedule that caused the change).
Hello Nick,
We haven't heard from you in recent months. I trust you are doing well and that your PSC is holding it's own. Let us know how you are doing if you are up to it. If there's anything we can do please don't hesitate to post a question.
Mark
PSC 2011 / Liver Transplant 2015
Hi Mark,
All is well. I am in full swing of my 3rd college semester. My numbers are down, but still doing blood work every 3 months. As some may know I am on Vanco. The biggest challenge I am going through right now is getting the proper Vanco. I was currently on Prasco Brand, but I just picked up my last prescription with that brand due to it being discontinued So we waiting on the pharmacy to get a brand by the name of ANI. We will see how that turns out.
Depression is still a common occurrence that I fight by staying busy. Hope everyone else is keeping there head up!
Nick,
Good to hear from you and to know that you are doing good and your numbers are down. Glad to hear the Vanco is doing a good job for you. Hopefully this new brand of the drug will do well also. Just keep living life to its fullest. You are still young and have a whole life ahead of you. I trust your college days will be fruitful and that you will achieve all the desires of your heart in your studies. Take care of yourself, eat as best you can and keep in touch. Stay away from anything that will be bad on that liver. We want it to last as long as it can!
Mark