Wow I am so sorry. . Did Dr. Lindor have any other suggestions? I will keep you and your husband in my thoughts and prayers.
Thanks. No not really. I have another email into him but he hasn't responded yet. Do you know him personally. Is he your daughter's doctor?
Cactusgirl said:
Wow I am so sorry. . Did Dr. Lindor have any other suggestions? I will keep you and your husband in my thoughts and prayers.
Have you discussed the Oral Vanco with her doctor should the need arise? My husband is rPSC and we WANT to try the OV for it but his doctor keeps insisting the risk is of VRE is too high for an immunosuppressed patient. =( If you have proof from a doctor that our doctor is wrong PLEASE let me know.
ubob said:
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
Hello all, I read this discussion with a lot of interest. I'm from Croatia and the one with two liver transplant surgeries in 7 years, and with PSC, Unfortunately blood tests were bad in the first week of this month, then again showed better results the last week. I take immunosuppressant and Urso(falc) pills only, as my doctors most probably don't know, or don't want to talk about this experimental treatments in US. I'm just printing all of these articles to show them up the next time, as I also think that in the case of emergency could be better to risk taking this antibiotic but to wait and eventually get another liver. To even think about another surgery is not funny, to say the least.
I agree with Cactusgirl who provided the link to the great informative article where is stated in
DISCUSSION
Despite numerous prior studies evaluating an array of pharmacological treatments for PSC, including immunosuppressants and anti-inļ¬ammatories, there remains to bean effective medical treatment for this disease.
Several recent studies, mostly small case series, have suggested a therapeutic effect with antibacterial agents while having only mild side-effect proļ¬les. ...
Based on this randomised, double-blind pilot study, vancomycin appears to be the better-tolerated drug and may have greater promise as a potential emerging therapy for patients with PSC.
http://onlinelibrary.wiley.com/doi/10.1111/apt.12232/full
If I understand this right Vancomycin should not be such risk for us on immunosuppressant therapy after all?
I am so sorry for how you have suffered. I truly hope that the oral vancomycn will help you. If there is any way I can help you let me know. I presume that you have previously seen Dr. Kenneth Cox's article? I have attached it for your easy access.
Yadran said:
122-CoxarticleonVancoOct2012.pdf (391 KB)Hello all, I read this discussion with a lot of interest. I'm from Croatia and the one with two liver transplant surgeries in 7 years, and with PSC, Unfortunately blood tests were bad in the first week of this month, then again showed better results the last week. I take immunosuppressant and Urso(falc) pills only, as my doctors most probably don't know, or don't want to talk about this experimental treatments in US. I'm just printing all of these articles to show them up the next time, as I also think that in the case of emergency could be better to risk taking this antibiotic but to wait and eventually get another liver. To even think about another surgery is not funny, to say the least.
I agree with Cactusgirl who provided the link to the great informative article where is stated in
DISCUSSION
Despite numerous prior studies evaluating an array of pharmacological treatments for PSC, including immunosuppressants and anti-inļ¬ammatories, there remains to bean effective medical treatment for this disease.
Several recent studies, mostly small case series, have suggested a therapeutic effect with antibacterial agents while having only mild side-effect proļ¬les. ...Based on this randomised, double-blind pilot study, vancomycin appears to be the better-tolerated drug and may have greater promise as a potential emerging therapy for patients with PSC.
http://onlinelibrary.wiley.com/doi/10.1111/apt.12232/full
If I understand this right Vancomycin should not be such risk for us on immunosuppressant therapy after all?
Thank you, I appreciate your help. I also hope that my main internist docs that are from transplantation team in Merkur hospital in Zagreb will be open to this kind of treatment. I already gave some of these papers, from Mayo clinic and Standford, to my family doctor, and she said that Vancomycin is available here and that I should talk to internist about it.
I will add this original article to all, and take it with me next time I go for exams in hospital, that should be next month.
Many thanks again ;)
Cactusgirl said:
I am so sorry for how you have suffered. I truly hope that the oral vancomycn will help you. If there is any way I can help you let me know. I presume that you have previously seen Dr. Kenneth Cox's article? I have attached it for your easy access.
Keep us posted! Good luck. C
Yadran said:
Thank you, I appreciate your help. I also hope that my main internist docs that are from transplantation team in Merkur hospital in Zagreb will be open to this kind of treatment. I already gave some of these papers, from Mayo clinic and Standford, to my family doctor, and she said that Vancomycin is available here and that I should talk to internist about it.
I will add this original article to all, and take it with me next time I go for exams in hospital, that should be next month.
Many thanks again ;)
Cactusgirl said:I am so sorry for how you have suffered. I truly hope that the oral vancomycn will help you. If there is any way I can help you let me know. I presume that you have previously seen Dr. Kenneth Cox's article? I have attached it for your easy access.
So let me see if I understand what you are saying Yadran...You have had 2 liver transplants in a 7 year period and you are using oral vancomycin for the recurrent PSC? Please let me know. My husband has had 1 transplant in 1998 and in 2004 his PSC returned. We want to try oral Vancomycin but are not sure what kind of risk it puts on his life as far as VRE is concerned.
Yadran said:
Hello all, I read this discussion with a lot of interest. I'm from Croatia and the one with two liver transplant surgeries in 7 years, and with PSC, Unfortunately blood tests were bad in the first week of this month, then again showed better results the last week. I take immunosuppressant and Urso(falc) pills only, as my doctors most probably don't know, or don't want to talk about this experimental treatments in US. I'm just printing all of these articles to show them up the next time, as I also think that in the case of emergency could be better to risk taking this antibiotic but to wait and eventually get another liver. To even think about another surgery is not funny, to say the least.
I agree with Cactusgirl who provided the link to the great informative article where is stated in
DISCUSSION
Despite numerous prior studies evaluating an array of pharmacological treatments for PSC, including immunosuppressants and anti-inļ¬ammatories, there remains to bean effective medical treatment for this disease.
Several recent studies, mostly small case series, have suggested a therapeutic effect with antibacterial agents while having only mild side-effect proļ¬les. ...Based on this randomised, double-blind pilot study, vancomycin appears to be the better-tolerated drug and may have greater promise as a potential emerging therapy for patients with PSC.
http://onlinelibrary.wiley.com/doi/10.1111/apt.12232/full
If I understand this right Vancomycin should not be such risk for us on immunosuppressant therapy after all?
Sonia, I would contact Dr. Kenneth Cox at Stanford, or Dr. Yinka Davies in Sacramento for other opinions.
Sonia96 said:
So let me see if I understand what you are saying Yadran...You have had 2 liver transplants in a 7 year period and you are using oral vancomycin for the recurrent PSC? Please let me know. My husband has had 1 transplant in 1998 and in 2004 his PSC returned. We want to try oral Vancomycin but are not sure what kind of risk it puts on his life as far as VRE is concerned.
Yadran said:Hello all, I read this discussion with a lot of interest. I'm from Croatia and the one with two liver transplant surgeries in 7 years, and with PSC, Unfortunately blood tests were bad in the first week of this month, then again showed better results the last week. I take immunosuppressant and Urso(falc) pills only, as my doctors most probably don't know, or don't want to talk about this experimental treatments in US. I'm just printing all of these articles to show them up the next time, as I also think that in the case of emergency could be better to risk taking this antibiotic but to wait and eventually get another liver. To even think about another surgery is not funny, to say the least.
I agree with Cactusgirl who provided the link to the great informative article where is stated in
DISCUSSION
Despite numerous prior studies evaluating an array of pharmacological treatments for PSC, including immunosuppressants and anti-inļ¬ammatories, there remains to bean effective medical treatment for this disease.
Several recent studies, mostly small case series, have suggested a therapeutic effect with antibacterial agents while having only mild side-effect proļ¬les. ...Based on this randomised, double-blind pilot study, vancomycin appears to be the better-tolerated drug and may have greater promise as a potential emerging therapy for patients with PSC.
http://onlinelibrary.wiley.com/doi/10.1111/apt.12232/full
If I understand this right Vancomycin should not be such risk for us on immunosuppressant therapy after all?
Hi Sonia, I wish I could tell you that I'm already using Vancomycin. Must be that language barrier so I was not so clear, sorry. It's this site that I found the first hand information about this antibiotic and experimental treatment in US. Here in Croatia they still don't practice this but I'm willing to try it if my doctors would agree. I was reading your story and know what is your husband and you are going through. If I understood well he is in the hospital and the blood tests are not good, but does his doctor suggests him another transplantation or not, how critical is the situation? Mine told me ten days ago after biopsy showed the signs of possible return of illness in liver that even the third or fourth transplantation is possible, without even mentioning there are maybe possible treatment with Vanco. My blood turned bad just few weeks ago, and I was so shocked and depressed after all.
After reading all your posts here and this study of treatments in US hospitals all I'm saying that the risk to take this antibiotic might have nothing but positive impact on someone with autoimmune disease. What is to loose after all, if even transplanted liver is attacked? I don't know, but it seems that even my doctors don't know how to fight this.
I really wish your husband and you the best, and to find the way out of this trouble.
Sonia96 said:
So let me see if I understand what you are saying Yadran...You have had 2 liver transplants in a 7 year period and you are using oral vancomycin for the recurrent PSC? Please let me know. My husband has had 1 transplant in 1998 and in 2004 his PSC returned. We want to try oral Vancomycin but are not sure what kind of risk it puts on his life as far as VRE is concerned.
Do you have contact info for Dr.Yinka Davies? Dr. Cox has not tried to reach out to me yet.
Cactusgirl said:
Sonia, I would contact Dr. Kenneth Cox at Stanford, or Dr. Yinka Davies in Sacramento for other opinions.
Sonia96 said:So let me see if I understand what you are saying Yadran...You have had 2 liver transplants in a 7 year period and you are using oral vancomycin for the recurrent PSC? Please let me know. My husband has had 1 transplant in 1998 and in 2004 his PSC returned. We want to try oral Vancomycin but are not sure what kind of risk it puts on his life as far as VRE is concerned.
Yadran said:Hello all, I read this discussion with a lot of interest. I'm from Croatia and the one with two liver transplant surgeries in 7 years, and with PSC, Unfortunately blood tests were bad in the first week of this month, then again showed better results the last week. I take immunosuppressant and Urso(falc) pills only, as my doctors most probably don't know, or don't want to talk about this experimental treatments in US. I'm just printing all of these articles to show them up the next time, as I also think that in the case of emergency could be better to risk taking this antibiotic but to wait and eventually get another liver. To even think about another surgery is not funny, to say the least.
I agree with Cactusgirl who provided the link to the great informative article where is stated in
DISCUSSION
Despite numerous prior studies evaluating an array of pharmacological treatments for PSC, including immunosuppressants and anti-inļ¬ammatories, there remains to bean effective medical treatment for this disease.
Several recent studies, mostly small case series, have suggested a therapeutic effect with antibacterial agents while having only mild side-effect proļ¬les. ...Based on this randomised, double-blind pilot study, vancomycin appears to be the better-tolerated drug and may have greater promise as a potential emerging therapy for patients with PSC.
http://onlinelibrary.wiley.com/doi/10.1111/apt.12232/full
If I understand this right Vancomycin should not be such risk for us on immunosuppressant therapy after all?
Hi Sonia, have you get in touch with dr.Cox or Davies yet?
Iām in the hospital right now waiting what will new blood test and magnet resonance show up. I did present the doctors those vancomycin study and they might try to put me on it for some short period of time, just waiting if Iāll get the firt dose. The big problem is that the last solution they have offered is another transplantation for what I donāt agree yet.
How is your husband, is he in hospital?
Hi. No, haven't gotten anywhere about trying my husband on it so far. We are at home. He goes back for stent replacements on April 3rd.
Yadran said:
Hi Sonia, have you get in touch with dr.Cox or Davies yet?
I'm in the hospital right now waiting what will new blood test and magnet resonance show up. I did present the doctors those vancomycin study and they might try to put me on it for some short period of time, just waiting if I'll get the firt dose. The big problem is that the last solution they have offered is another transplantation for what I don't agree yet.
How is your husband, is he in hospital?
I got the first dose of Vanco of 250mg liquid in the noon, and should get more during the day. Doc. told me the possibilty for the stent if they find blocked bile canal. What you say now it seems that stent is not the solution, I suppose your husband has the same sort of it? Have you seen this topic http://forum.livingwithpsc.org/forum/topics/psc-cure-near I showed the article to my docs today and they even didnāt know about it, this is crazy, this hospital is recognized as one of the best in eastern Europe for liver translantation. I said to them letās try anything before putting me on a list.
Sonia96 said:
Hi. No, havenāt gotten anywhere about trying my husband on it so far. We are at home. He goes back for stent replacements on April 3rd.
Yadran said:Hi Sonia, have you get in touch with dr.Cox or Davies yet?
Iām in the hospital right now waiting what will new blood test and magnet resonance show up. I did present the doctors those vancomycin study and they might try to put me on it for some short period of time, just waiting if Iāll get the firt dose. The big problem is that the last solution they have offered is another transplantation for what I donāt agree yet.
How is your husband, is he in hospital?
Hi Sonia, Dr. Lindor has 2 articles just published: "Primary sclerosing cholangitis: a review and update on therapeutic developments" (2/2013) and "An update on primary sclerosing cholangitis:from pathogenesis to treatment" (3/2013). I can only access the abstracts but both discuss OV as a treatment option. I am trying to get the full articles. I have attached Dr. Lindor's clinical study that shows OV helped adult PSC patients. In the meantime perhaps your husband's doctor can get access sooner. Why is your husband's doctor unwilling to try a 3 month OV trial? C
121-LindorFeb52013RandomisedClinicalTrial.docx (76.9 KB)We STILL haven't see his regular doctor again yet. Unfortunately going to a university hospital/clinic we have been seeing either interns only or other doctors in with his regular doctor that in our opinion are clueless when it comes to my husband's personal case. They keep saying the there is a chance that even though the oral vanco stays in the gut, it may leak into the blood stream via colon ulcers or something and introduce itself to other bacteria that may become resistant to it. They say the studies done have not been long term enough to know what their (the OV patients) future may hold and he doesn't want to take that risk because if that happens he will die but he has a better chance with a another liver transplant. =( But keep the info coming. I TRULY appreciate it. We aren't gonna give up...
Cactusgirl said:
Hi Sonia, Dr. Lindor has 2 articles just published: "Primary sclerosing cholangitis: a review and update on therapeutic developments" (2/2013) and "An update on primary sclerosing cholangitis:from pathogenesis to treatment" (3/2013). I can only access the abstracts but both discuss OV as a treatment option. I am trying to get the full articles. I have attached Dr. Lindor's clinical study that shows OV helped adult PSC patients. In the meantime perhaps your husband's doctor can get access sooner. Why is your husband's doctor unwilling to try a 3 month OV trial? C
I pray it helps you. The stents are working some on my hubby but not to the extent we feel they should be. We will show them the Nor-Urso article you sent. Thanks so VERY much for trying to help him =)
Yadran said:
I got the first dose of Vanco of 250mg liquid in the noon, and should get more during the day. Doc. told me the possibilty for the stent if they find blocked bile canal. What you say now it seems that stent is not the solution, I suppose your husband has the same sort of it? Have you seen this topic http://forum.livingwithpsc.org/forum/topics/psc-cure-near I showed the article to my docs today and they even didn't know about it, this is crazy, this hospital is recognized as one of the best in eastern Europe for liver translantation. I said to them let's try anything before putting me on a list.
Sonia96 said:Hi. No, haven't gotten anywhere about trying my husband on it so far. We are at home. He goes back for stent replacements on April 3rd.
Yadran said:Hi Sonia, have you get in touch with dr.Cox or Davies yet?
I'm in the hospital right now waiting what will new blood test and magnet resonance show up. I did present the doctors those vancomycin study and they might try to put me on it for some short period of time, just waiting if I'll get the firt dose. The big problem is that the last solution they have offered is another transplantation for what I don't agree yet.
How is your husband, is he in hospital?
Maybe if you can just convince them to put him on a short term trial. By the way, Dr. Cox's patients have been on OV for years and are fine - adults now.
Sonia96 said:
We STILL haven't see his regular doctor again yet. Unfortunately going to a university hospital/clinic we have been seeing either interns only or other doctors in with his regular doctor that in our opinion are clueless when it comes to my husband's personal case. They keep saying the there is a chance that even though the oral vanco stays in the gut, it may leak into the blood stream via colon ulcers or something and introduce itself to other bacteria that may become resistant to it. They say the studies done have not been long term enough to know what their (the OV patients) future may hold and he doesn't want to take that risk because if that happens he will die but he has a better chance with a another liver transplant. =( But keep the info coming. I TRULY appreciate it. We aren't gonna give up...
Cactusgirl said:Hi Sonia, Dr. Lindor has 2 articles just published: "Primary sclerosing cholangitis: a review and update on therapeutic developments" (2/2013) and "An update on primary sclerosing cholangitis:from pathogenesis to treatment" (3/2013). I can only access the abstracts but both discuss OV as a treatment option. I am trying to get the full articles. I have attached Dr. Lindor's clinical study that shows OV helped adult PSC patients. In the meantime perhaps your husband's doctor can get access sooner. Why is your husband's doctor unwilling to try a 3 month OV trial? C
Most docs from all over the world do not know about OV as a treatment for PSC and if they do they are reluctanct to try it. You have to educate them. But what are the alternatives at this time?
Sonia96 said:
I pray it helps you. The stents are working some on my hubby but not to the extent we feel they should be. We will show them the Nor-Urso article you sent. Thanks so VERY much for trying to help him =)
Yadran said:I got the first dose of Vanco of 250mg liquid in the noon, and should get more during the day. Doc. told me the possibilty for the stent if they find blocked bile canal. What you say now it seems that stent is not the solution, I suppose your husband has the same sort of it? Have you seen this topic http://forum.livingwithpsc.org/forum/topics/psc-cure-near I showed the article to my docs today and they even didn't know about it, this is crazy, this hospital is recognized as one of the best in eastern Europe for liver translantation. I said to them let's try anything before putting me on a list.
Sonia96 said:Hi. No, haven't gotten anywhere about trying my husband on it so far. We are at home. He goes back for stent replacements on April 3rd.
Yadran said:Hi Sonia, have you get in touch with dr.Cox or Davies yet?
I'm in the hospital right now waiting what will new blood test and magnet resonance show up. I did present the doctors those vancomycin study and they might try to put me on it for some short period of time, just waiting if I'll get the firt dose. The big problem is that the last solution they have offered is another transplantation for what I don't agree yet.
How is your husband, is he in hospital?
Youāre right C.girl. When I told mine docs about it they were wondering, but it also makes me wonder how low comunication is between medical centers that treat similar illnesses. However they did put me on a short term trial, just as you suggest to Sonia, it will be for one week hopefully while Iām here in the hospial. I expect to receive 1000ml daily in liquid form. Time will tell.