The drug is extremely expensive if you buy it encapsulated. If you shop compounding pharmascitis they can take the IV form and encapsulate it for you at around a 10th of the cost or less. If I recall correctly the daily dosage is 1500mg. I also don't believe that age is a factor in this treatment as much as how far the disease has progressed. When i spoke to Dr. Cox he was gaining remission in many patients who were on this treatment, I don't recall if any had discontinued the treatment to see if the disease would return. I don't understand why patients aren't jumping all over this. When my daughter was diagnosed with crohns disease we found a a doctor using wellbutrin as a TNF inhibitor and saw her gain remission in a short period of time; over the years I was 6 other patients go on this drug with the same result and shared the results with hunderds of other crohns patients who were unwilling to give it a try. This drug cost 30 dollars a month compared to remicade or humara which cost approx 1K per week. Those drugs make to much money for this drug to be allowed as a treatment. While my daughter was in the hospital recently waiting for her transplant a doctor came into our room and asked me about my daughter taking wellbutrin for crohns and he was exited with the possibility; he told me that as a researcher he had attempted to publish research demonstrating that remicade caused multiple sclerosis only to has his research crushed. I dont mean to keep rambiling but Dr. Cox seems to be offering the proverbial free lottery ticket with nothing to lose and everything to gain. Watching my daughter dying in the hospital 8 weeks ago and praying desperately for a transplant and fortunately for us and unfortunately for another family we were blessed with a donor and my daughter has a new chance at life. Had i known about this treatment 5 or 10 years ago I would have flown anywhere in the world or done anything to get it for my daughter. I have had my daughter to the best of the best , shes been to Dartmouth, Mayo, Baylor and seen all the experts and currently there is nothing to be done. The doctors at all these facilities said that urisodiol is of little to no value in this disease, there is no treatment currently that is being offered other than get sick and pray for a transplant. I dont understand why PSC pateints arent jumping at this treatment.
Evan
Joy K said:
I just read the study from Dr. Cox where he gave Vancomycin as a treatment to children with PSC with excellent results. I am going to have Ed speak to his doctor tomorrow to see if he can try the drug. I know he's well pass childhood years but it might help him feel better.
We are blessed with a zero copay on our prescription plan but I would pay just about anything if the treatment works. I'm also not sure if age makes a difference or the length of time a person has the disease but it's worth a try. From what I've read on Urso, it makes the blood tests look better but does nothing to halt the progression of the disease so my question is why take somthing that masks the blood tests.
ubob said:
The drug is extremely expensive if you buy it encapsulated. If you shop compounding pharmascitis they can take the IV form and encapsulate it for you at around a 10th of the cost or less. If I recall correctly the daily dosage is 1500mg. I also don't believe that age is a factor in this treatment as much as how far the disease has progressed. When i spoke to Dr. Cox he was gaining remission in many patients who were on this treatment, I don't recall if any had discontinued the treatment to see if the disease would return. I don't understand why patients aren't jumping all over this. When my daughter was diagnosed with crohns disease we found a a doctor using wellbutrin as a TNF inhibitor and saw her gain remission in a short period of time; over the years I was 6 other patients go on this drug with the same result and shared the results with hunderds of other crohns patients who were unwilling to give it a try. This drug cost 30 dollars a month compared to remicade or humara which cost approx 1K per week. Those drugs make to much money for this drug to be allowed as a treatment. While my daughter was in the hospital recently waiting for her transplant a doctor came into our room and asked me about my daughter taking wellbutrin for crohns and he was exited with the possibility; he told me that as a researcher he had attempted to publish research demonstrating that remicade caused multiple sclerosis only to has his research crushed. I dont mean to keep rambiling but Dr. Cox seems to be offering the proverbial free lottery ticket with nothing to lose and everything to gain. Watching my daughter dying in the hospital 8 weeks ago and praying desperately for a transplant and fortunately for us and unfortunately for another family we were blessed with a donor and my daughter has a new chance at life. Had i known about this treatment 5 or 10 years ago I would have flown anywhere in the world or done anything to get it for my daughter. I have had my daughter to the best of the best , shes been to Dartmouth, Mayo, Baylor and seen all the experts and currently there is nothing to be done. The doctors at all these facilities said that urisodiol is of little to no value in this disease, there is no treatment currently that is being offered other than get sick and pray for a transplant. I dont understand why PSC pateints arent jumping at this treatment.
Evan
Joy K said:
I just read the study from Dr. Cox where he gave Vancomycin as a treatment to children with PSC with excellent results. I am going to have Ed speak to his doctor tomorrow to see if he can try the drug. I know he's well pass childhood years but it might help him feel better.
I hope your insurance covers the cost but being that the dose is extremely high and that the duration is going to be outside of normal they may have a fit; if thats the case the compouning pharmasits can make it affordable. I shoppped and the price ranged from $1500 to $300 per month. interestingly I believe the cost on the IV poweder is in the $15 range and the additional cost is someone taking the tome to encapsulate it. Good luck and if you are able to do this please share the results. Dr. Cox also will happily speak to PCS patients at no cost,
ok,...wait a minute. I'm very new to this group and have been diagnosed with PSC & UC for 6 years. I've always suffered from headaches/migraines, blurry vision, etc. These are all related now? I like to look into how the body works from an elemenatry standpoint and try and find natural alternatives. I just assumed that when I took excedrine for the headaches, that my immune system didn't like the drugs sitting in my liver and colon therefore attacking it and that's why I have these problems. I don't know anything about medicine, I just try to make sense of it and hearing that headaches are a part of PSC really makes sense now why I have so many of them in the first place.
I have found that some natrual cleanses (Intense Mega Cleanse) along with some Milk Thistle supplements really helped keep my liver enzymes in the normal range without the Urodiol & Pentasa. Sorry I'm sorry if I sound ignorant, I just haven't really paid much attention to this disease because I try to ignore that I have it and live a normal life.