I spent most of june in the hospital watching my daughter die and at the very last moment we were blessed with a donor. As the saying goes you have a free lottery ticket with nothing to lose and everything to gain. I hope that this puts your daughter in remission and I pray that you can avoid ever needing a transplant.
GOD BLESS
My son (14) was recently diagnosed with PSC/AIH and hemolytic anemia, he was prescribed Vancomycin which sounds like a miracle drug, however I am wondering if anyone has any information on resources that would help pay for the medicine? After insurance our COPAY would be $742.00 every 23 days, he is also on 8 other meds/month which gets very costly and I would love for him to start this medicine but just can't afford it.
Yikes! OV (oral vancomycin) is generic. Is that for the generic version? If so, you have a couple of options - 1) go for the liquid version. It is less convenient but much cheaper -the pharmacist can formulate it for you. You may have to go to an apothecary. My doctor offered this service to me but our insurance covers it with only a small copay 2) purchase it from a Canadian (or foreign) pharmacy - I priced it out for 1500mg/day of the pills (180 pills) for 30 days and paying for it without insurance was about what you were quoted for 23 days with insurance. You will see results pretty quickly if the OV will work for him. Message me if you have more questions. My heart is with you and your son.
I am so sorry. Thank you for your prayers. What a blessing that she received a new liver. Please carefully monitor her new liver for signs of a reoccurence of PSC. If there is, the OV could arrest a new disease and keep her new liver healthy.
ubob said:
I spent most of june in the hospital watching my daughter die and at the very last moment we were blessed with a donor. As the saying goes you have a free lottery ticket with nothing to lose and everything to gain. I hope that this puts your daughter in remission and I pray that you can avoid ever needing a transplant.
GOD BLESS
Thank you we will put her on vanco if the pcs returns, are you getting yours compouned fro IV vano, it costs around $300 per month.
UBOB
No, I am getting the pills. She takes 2 pills (250mg ea) 3x/day. I only have a very small copay because OV is generic.
Thanks for the tips! After checking with my pharmacy that they were quoting the generic and in fact they were, I asked about compounding it and they did not offer that service:( I asked for the original script back and went home and googled compounding pharmacies in my area and found one in my sons primary care building! I ran right over there and they were able to have it ready for me in 20 minutes for a $21.00 copay for the same 23 days worth, needless to say I felt like a complete baby as I broke out in tears right there at the counter, I have been struggling with this for over a month now and there is no worse feeling then being completly helpless when it comes to situations like this especially when it involves your children. Hoping this is the "miracle" drug and that he is now on the right track! Thanks again
Cactusgirl said:
Yikes! OV (oral vancomycin) is generic. Is that for the generic version? If so, you have a couple of options - 1) go for the liquid version. It is less convenient but much cheaper -the pharmacist can formulate it for you. You may have to go to an apothecary. My doctor offered this service to me but our insurance covers it with only a small copay 2) purchase it from a Canadian (or foreign) pharmacy - I priced it out for 1500mg/day of the pills (180 pills) for 30 days and paying for it without insurance was about what you were quoted for 23 days with insurance. You will see results pretty quickly if the OV will work for him. Message me if you have more questions. My heart is with you and your son.
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. 
How much/how many times a day is your daughter taking the 900B VSL#3? I am trying to get all of this info straight while I wait for my hubby's doctor to call us back. =)
Cactusgirl said:
Hi Sonia, my 15 year old daughter started oral vancomycin (OV) on October 18, 2012 - 500mg 3x day. She also takes 900B VSL#3 per day in yogurt. She takes her meds religiously @ 6, 2, and 10. Within 2 days of starting the OV all her clinical UC symptoms disappeared. We got her liver tests back two days ago and EVERYTHING is normal (except the GGT was 40, down from 367). Will see her hepatologist this coming Wednesday. If you want further info from me let me know how I can help. While the successful OV trials have been on children, the adult trials seemed to use lower doses so the higher dose might be effective. i would see if your husbands doc will put him on a higher dose. My prayers are with you and your husband.
Bernie, At 21you are probably still a ped. I would absolutely try the OV. Let me know how you do and if you need some of my research. C
She takes 450b VSL#3 2x /day, in yogurt. Do not take with orange juice as the acid may kill the bacteria. Did you explore the OV option for your husband? The adult studies are not as positive as the pediatric studies but they were done at a lower dosing protocol. I know that the new Stanford study on OV is at up to 1000mg 3x/ day. You should ask your husband’s doctor.
No, we haven't explored it with his doctor yet. We are awaiting his call to do so though. TY so VERY MUCH for the info though, I pray this is our answer too. =)
Cactusgirl said:
She takes 450b VSL#3 2x /day, in yogurt. Do not take with orange juice as the acid may kill the bacteria. Did you explore the OV option for your husband? The adult studies are not as positive as the pediatric studies but they were done at a lower dosing protocol. I know that the new Stanford study on OV is at up to 1000mg 3x/ day. You should ask your husband's doctor.
I would push for a 3 month trial on OV at a min of 500mg 3x/day. challenge him to tell you how it could hurt him. How old is your husband and at what age was he diagnosed?
He is 43. He started having symptoms at age 20 in 1990 right after we were married. He was FINALLY diagnosed at age 24 in 1994. Was transplanted in 1998 and the disease started showing up again in 2004. In the last few months it has started getting worse again. =( Hopefully it isn't too late to correct it with the oral vanco if it helps him.
Cactusgirl said:
I would push for a 3 month trial on OV at a min of 500mg 3x/day. challenge him to tell you how it could hurt him. How old is your husband and at what age was he diagnosed?
Do you know what stage he is now? keep me posted. my prayers and thoughts are with you both.
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. :)
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.
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.
My daughter's stool frequency dropped from 5/day to 2 or 1/day within 3 days. They were completely normal within 1 month. We did not do bloodwork until 3 months after starting the OV. At that time, all was normal, including all inflammatory factors. The tests were ESR ALT ALP CRP PLATLET GGT WHITE BILIRUBIN CA PHOS MG INR C-Reactive Protein CMP Vit D CA19-9
Her doc originally started her on the dose you have your son on (1000mg/day) but 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. It was after this increase in dosing that we saw the dramatic response.
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. :)