Her doc originally started her on the dose you have your son on (1000mg/day --she was taking 250mg 4xday). She improved only slightly. When I saw Dr. Cox's study and the dosing protocol of 500mg 3x/day we asked our doc to increase the script which he did. It was after this increase in dosing that we saw the dramatic and quick response. Also, her doctors took her off all other meds -- no need for the 6mp or urso any more. I would question whether he would need all those meds and I would question the dosing he is on. Ask them to consult with Dr. Cox if necessary or at least read his study.
acain1214 said:
Wondering how soon you saw results from the OV? And which blood markers to look for? We started the OV on Monday and have an appt tomorrow with our hematologist.
Cactusgirl said:
Wow fantastic. You made my day!! Who is your doctor and how did you get him to prescribe the OV? What dosage? Just curious. How old is your son and what stage is he? You can message me if you would prefer. :)
Thanks for the info! The Dr originally asked if he was able to take it 3X/ day and I was not sure due to school, but after hearing this I will call and have the script adjusted and will provide the school nurse with the info to make sure he is getting it on schedule.
Cactusgirl said:
Cactusgirl said:
Her doc originally started her on the dose you have your son on (1000mg/day --she was taking 250mg 4xday). She improved only slightly. When I saw Dr. Cox's study and the dosing protocol of 500mg 3x/day we asked our doc to increase the script which he did. It was after this increase in dosing that we saw the dramatic and quick response. Also, her doctors took her off all other meds -- no need for the 6mp or urso any more. I would question whether he would need all those meds and I would question the dosing he is on. Ask them to consult with Dr. Cox if necessary or at least read his study.
acain1214 said:
Wondering how soon you saw results from the OV? And which blood markers to look for? We started the OV on Monday and have an appt tomorrow with our hematologist.
Cactusgirl said:
Wow fantastic. You made my day!! Who is your doctor and how did you get him to prescribe the OV? What dosage? Just curious. How old is your son and what stage is he? You can message me if you would prefer. :)
Are the probiotics your daughter is on RX or off the shelf at a pharmacy? Also, can I maybe get an email address for you so if my hubby's doctor wants to know more about your daughter's experience he can write you? I am in the process of emailing him right now. I am also sending him Dr. Cox's email address from Stanford. =)
Sonia96 said:
Sonia96 said:
I am not sure what stage he s in. I would say very early still. Also, how soon do you see the results if it works and what blood markers should we watch? Thanks for your thoughts and prayers.
Cactusgirl said:
Do you know what stage he is now? keep me posted. my prayers and thoughts are with you both.
I had appt. with my doc yesterday. Gave him vancomycin papers, he said he will call authorities to ask if the treatment is approved for adult PSC. So chance is minuscular he will prescribe OV.
I have no idea. But my daughter is now completely normal after taking OV. Maybe docs are reluctant to use vancomycin because it is considered a drug of last resort, so they don't want it to be overprescribed. A 3 month trial is not going to hurt so why not try it? But be sure to get on strong enough dose. The published study dose for children was 50 mg/kg/day with a max of 1500mg/day. There is a new study using up to 100mg/kg/day for children who didn't response to the lower dose. If I had PSC as an adult I sure as heck would try it. The adult studies used lower doses but I would try the higher dose protocol.
How bad was your daughter before they put her on the OV? Was she yellow, having pain, bad labs?
Cactusgirl said:
I have no idea. But my daughter is now completely normal after taking OV. Maybe docs are reluctant to use vancomycin because it is considered a drug of last resort, so they don't want it to be overprescribed. A 3 month trial is not going to hurt so why not try it? But be sure to get on strong enough dose. The published study dose for children was 50 mg/kg/day with a max of 1500mg/day. There is a new study using up to 100mg/kg/day for children who didn't response to the lower dose. If I had PSC as an adult I sure as heck would try it. The adult studies used lower doses but I would try the higher dose protocol.
No pain, not yellow. She was very early stage I. But her labs were bad, she had lots of colonic inflammation and 5+ liquid and urgent stools/day. She was underweight (she has gained 12 lbs since mid-October), and had never gone thru puberty (began 6 weeks after starting OV). I have read that patients whose PSC has progressed too far may not respond to the OV or may not have reversible damage. But I am obviously not a doctor - I have just read a lot. What stage is your husband? Does he have all of those symptoms?
We haven't heard his stage yet. How do they stage you? I figured on a MELD calculator he is a 12. That goes by age and INR,Creatinine, and total bilirubin. He is yellow and has been having off and on pain. Some of which we feel is related to the UC.
Cactusgirl said:
No pain, not yellow. She was very early stage I. But her labs were bad, she had lots of colonic inflammation and 5+ liquid and urgent stools/day. She was underweight (she has gained 12 lbs since mid-October), and had never gone thru puberty (began 6 weeks after starting OV). I have read that patients whose PSC has progressed too far may not respond to the OV or may not have reversible damage. But I am obviously not a doctor - I have just read a lot. What stage is your husband? Does he have all of those symptoms?
Ok, I guess I'll have to ask his doctor. Not sure on which one he would be. HOPEFULLY, the doctor hasn't waited too long to try the OV on him. =( We have already been through 1 transplant.
Cactusgirl said:
I just did my daughter's MELD - 7. But the range is 6-40. I do not know where a 12 falls in terms of staging. The staging is typically done by an MRCP or a biopsy I think.
Here are two different definitions of staging:
1. Histological staging
There are 4 histological stages of the disease. They have limited value in predicting survival from PSC, perhaps due to the high degree of sampling variability:[8]
Stage 1: degeneration of the epithelial cells lining the bile ducts, associated with inflammatory cell ductal and periportal triad infiltration and scarring. Stage 2: fibrosis, paucity of bile ductules, periportal inflammatory cell infiltration, and piecemeal necrosis of the periportal hepatocytes. Stage 3: severe degenerative changes, with disappearance of the bile ducts, portal-to-portal fibrous septa, and periportal cholestasis. Stage 4: end-stage disease with secondary biliary cirrhosis.
You should ask his doc what harm there is in trying the OV. Make sure that the dosing is high enough. Keep me posted. My thoughts are with you and your husband.
I think doctors are scary of lawsuits, so do not want to prescribe anything on experimental basis.
z12 said:
I had appt. with my doc yesterday. Gave him vancomycin papers, he said he will call authorities to ask if the treatment is approved for adult PSC. So chance is minuscular he will prescribe OV.
That being the case the patient if not a minor should be able to sign a waiver. I know we would in a heartbeat at a chance to beat this AWFUL disease. It is my hubby's 2nd go around with it.
z12 said:
I think doctors are scary of lawsuits, so do not want to prescribe anything on experimental basis.
z12 said:
I had appt. with my doc yesterday. Gave him vancomycin papers, he said he will call authorities to ask if the treatment is approved for adult PSC. So chance is minuscular he will prescribe OV.
I read the article on the pediatric case. Is there much info available on adults? Does it actually repair any damage or just ease the symptoms? My local gastro hadn't heard of it, but I definitely want to discuss it with my hepatologist at MUSC.
Hey. We are in the hospital. Have been since early Monday morning. I just got to see hubby's doctor and asked him for the OV and he said no. It would lead to Vanco resistant enteroccal (sp?) bacteria? =( Now what?
Cactusgirl said:
You should ask his doc what harm there is in trying the OV. Make sure that the dosing is high enough. Keep me posted. My thoughts are with you and your husband.
I am not a doc but I disagree with your husband's doc. The risk to your husband from PSC is greater than the risk that he will get a vanco resistant bacteria. Clearly other world renowned docs, including my daughter's, believe the cure is worth the risk. I would contact Dr. Keith Lindor, the author of the most recent adult study -- there is an email link in this article: http://onlinelibrary.wiley.com/doi/10.1111/apt.12232/full
message me if you want to talk further. if i can help you i will.
Hey. I guess we won't be trying the oral vanco. According to Dr. Lindor, with my husband being a post transplant patient with recurrent PSC it ups his risk of getting a VRE. =( Thanks for all the help though. I truly appreciate it.
Cactusgirl said:
I am not a doc but I disagree with your husband's doc. The risk to your husband from PSC is greater than the risk that he will get a vanco resistant bacteria. Clearly other world renowned docs, including my daughter's, believe the cure is worth the risk. I would contact Dr. Keith Lindor, the author of the most recent adult study -- there is an email link in this article: http://onlinelibrary.wiley.com/doi/10.1111/apt.12232/full
message me if you want to talk further. if i can help you i will.