Thank you. They told me I’m still in the early stages.
You’re so awesome.
Yes, my ulcerative colitis seems to have definitely improved. I will know for sure when I have a repeat colonoscopy (to monitor dysplasia found last fall), in two weeks.
Did they tell you which early stage?
They just said the PSC is in the early stages. I don’t have IBD.
Docs are fine with my raising my dose to 750 mg 3x for a month (which I began a few days ago on my own), and then 1,000 if no improvement.
My question is should I do this, or change brands from CutisPharma to oral Ani?
My docs are completely in the dark about this. It is my decision. I am willing to pay 1,000. for a few months to see if Ani makes a difference.
But, you are correct, many people seem to respond well to CutisPharma.
Not sure what to do.
Wondering what you and/or others here think?
Susan, if you change 2 variables at a time (dosage and brand) you will not know which of the 2 variables contributed to the change. To me personally, it seems that if Cutis Pharma OV worked for your UC (and worked for others with PSC on this forum) possibly you will need a higher dose to see the effects on the PSC as well. I’d say that after trying a higher dose, if it still does not work you can switch to a different brand. Another way to approach this, could be to change the brand now to the one that JTB recommended, use the same starting dosage as before 3x500mg per day and see if the new brand is working better than the Cutis Pharma. I think though that the best way to start/manage the OV treatment is to get in contact with someone in Stanford. Would you be able to do that?
Thank you for these thoughts. I agree with you.
I wonder: Are the docs working on studies with Vancomycin really open and willing and happy to talk to people who are not their patients? Does anyone have any experience calling out of the blue who cannot get to their offices or be their patients?
Yes Susan. I was one of those people. I sent an email to Dr.Cox back on Dec 27 2013 asking for help with my daughter. Back then I wasn’t even aware of the existence of this forum, it just happened that I read some research papers and i contacted him on an email provided on the clinical trials web page. Dr. Cox kindly helped us along the way, without my daughter being part of his trial. We could not travel to Stanford in Palo Alto, but we plan to do that soon. Can you schedule an appointment with Dr.Cox’s team? In Ireland you can do that via your family doctor. Can you self refer in US? Alternatively you can send them an email and get it from there. I know there are people on this forum who were in contact with the Stanford team recently, they will advise you better. All the best.
Also, Dr. Cox is willing to discuss and share the knowledge about his protocol and this disease with your local Dr. Our local Dr. got in contact with him a couple of times (through emails) and for example after one year of Vanco they decided to reduce the dose for my daughter. And it worked quite well.
I will email him.
I live in the northeast and am too sick to travel to see these doctors in person.
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.
So happy for you…it is working:). Patience now and hope. How is GamaGT?
All the best,
My GGT is usually normal, these years.
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.
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?
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.
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, 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.
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,
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,