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Mom & Dad
I lost my dad 5 years ago to liver disease (hep C) he would not change his lifestyle and did not qulify for treatment. He had asked that I take care of him before he became non responsive, so a month before my 30 birthday I got him home with meds and everything I would need to take care of him during his last days.. It was a HARD time for me... but God gave me peace and strength to do what I he needed me to do..
In 1996 my mother was diagnosed with hep C and start the intepheron treatment. She lost her hair and was was close to death. In the end... She was a non-responder and has lived as healty as she could over these last 15 years. She quite 'partying' years ago!
Well with the new treatment just release a few months ago she was a canidant for the triple combat therpy. The doctor told her to take 3 of the purple pills and 2 of the with pills in the morning and then again the same dose of pills at the same time at night with the shot on wen. evening.
She was having such a hard time with the side effects that Tues. morning was her last dose (her choice, not dr. orders)
MY QUESTION.... IS ANYONE OUT THERE ON THIS SAME TREATMENT AND HOW IS IT WORKING FOR YOU?
I would do it again in a heart beat (take care of my dad) and more then willing to do the same for my mother.. If she decides to stop treatment and God don't heal her... she will die just like my dad and I am just wanting some feed back... something I can tell her that will make at least give it a chance...
God Bless you all and may you have the strength. Remember to fall to your knees when you can stand know longer...
In 1996 my mother was diagnosed with hep C and start the intepheron treatment. She lost her hair and was was close to death. In the end... She was a non-responder and has lived as healty as she could over these last 15 years. She quite 'partying' years ago!
Well with the new treatment just release a few months ago she was a canidant for the triple combat therpy. The doctor told her to take 3 of the purple pills and 2 of the with pills in the morning and then again the same dose of pills at the same time at night with the shot on wen. evening.
She was having such a hard time with the side effects that Tues. morning was her last dose (her choice, not dr. orders)
MY QUESTION.... IS ANYONE OUT THERE ON THIS SAME TREATMENT AND HOW IS IT WORKING FOR YOU?
I would do it again in a heart beat (take care of my dad) and more then willing to do the same for my mother.. If she decides to stop treatment and God don't heal her... she will die just like my dad and I am just wanting some feed back... something I can tell her that will make at least give it a chance...
God Bless you all and may you have the strength. Remember to fall to your knees when you can stand know longer...
As everyone said it is too late to start treatment again but more to the point if your mother is turning yellow and coughing and defecating blood she needs to stop treatment anyway. If she is having such issues after 15 days how could she ever do treatment for 48 weeks?
Do you know the condition of your mother’s liver? Did she have a biopsy in a hospital where they punctured through her abdomen and took samples of her liver before starting treatment? The results are in terms of Stage and Grade.
From everything you have said, she turn yellow (jaundice), vomiting and defecating blood (variceal bleeding). Your mother’s liver disease is probably too advanced to be treated wit hepatitis treatment. That her doctor isn’t closely monitoring her and hasn’t returned your phone calls means for whatever excuse he will give that he is NOT qualified to treat your mother. There are many papers available for doctor’s to know how to treat patients with these “new” drugs. They have been available since last Summer and there is no mystery to it. If he doesn’t know how to use them, he should be treating with them. He shouldn’t be experimenting on someone you’re your mother is apparently is very ill to begin with and he has made her sicker. These are very powerful and potentially dangerous drugs. To make a long story short your doctor’s incompetence has caused your mother to have a potentially fatal complication of advanced cirrhosis (vomiting blood). He could have killed your mother if she was alone and couldn’t get to the ER before she bleed out. If it were myself or my mother I would never go back to that doctor tell him to get your mother into a transplant center and never ever go back to him.
Is the doctor a gastroenterologist sometimes known as a GI doctor?
Your mother doesn’t have to die like your father did. Remember your father refused to follow the rules for getting a transplant. Your mother still has that option if you act soon. Assuming your mother has advanced cirrhosis otherwise know as End-Stage Liver Disease she needs to be seen at a Liver Transplant Center ASAP. Since you are in Waco, Baylor University Medical Center is in Dallas is a great transplant center. This is the only chance to save your mother’s life. If she can’t go hepatitis C treatment because her liver disease is too advanced she can get on the transplant list at Baylor and get a liver transplant. That is her only option if she can’t do hepatitis treatment. I also have End-Stage Liver Disease and am waiting for a transplant.
Good luck to your mother and yourself.
Get a hepatologist at a transplant center to evaluate your mother's condition and care for her.
Hector
Do you know the condition of your mother’s liver? Did she have a biopsy in a hospital where they punctured through her abdomen and took samples of her liver before starting treatment? The results are in terms of Stage and Grade.
From everything you have said, she turn yellow (jaundice), vomiting and defecating blood (variceal bleeding). Your mother’s liver disease is probably too advanced to be treated wit hepatitis treatment. That her doctor isn’t closely monitoring her and hasn’t returned your phone calls means for whatever excuse he will give that he is NOT qualified to treat your mother. There are many papers available for doctor’s to know how to treat patients with these “new” drugs. They have been available since last Summer and there is no mystery to it. If he doesn’t know how to use them, he should be treating with them. He shouldn’t be experimenting on someone you’re your mother is apparently is very ill to begin with and he has made her sicker. These are very powerful and potentially dangerous drugs. To make a long story short your doctor’s incompetence has caused your mother to have a potentially fatal complication of advanced cirrhosis (vomiting blood). He could have killed your mother if she was alone and couldn’t get to the ER before she bleed out. If it were myself or my mother I would never go back to that doctor tell him to get your mother into a transplant center and never ever go back to him.
Is the doctor a gastroenterologist sometimes known as a GI doctor?
Your mother doesn’t have to die like your father did. Remember your father refused to follow the rules for getting a transplant. Your mother still has that option if you act soon. Assuming your mother has advanced cirrhosis otherwise know as End-Stage Liver Disease she needs to be seen at a Liver Transplant Center ASAP. Since you are in Waco, Baylor University Medical Center is in Dallas is a great transplant center. This is the only chance to save your mother’s life. If she can’t go hepatitis C treatment because her liver disease is too advanced she can get on the transplant list at Baylor and get a liver transplant. That is her only option if she can’t do hepatitis treatment. I also have End-Stage Liver Disease and am waiting for a transplant.
Good luck to your mother and yourself.
Get a hepatologist at a transplant center to evaluate your mother's condition and care for her.
Hector
Very sorry to hear about the troubles your dad went through and your are to be commended for the care you gave him on his last days.
In regards to your mom; I would agree with the two posters above that have mentioned that interruption of treatment drugs is not advised ,especially when it concerns the new medications(Victrelis or Incivek) There are strict prescribing protocols in place in order for patient to not have futile treatments with the possibility of "resistance issues"
Turning "mustard yellow" defecating and vomiting blood are not normal side effects of this therapy and your mom needs to be evaluated at the earliest possible time by a knowledgeable doctor in HCV and experienced with the treatment protocols. You have not mentioned the state of your moms liver ,however if she is chirrotic these conditions you mention can be life threatening.
If her doctor is unwilling or unable to attend to her forwith I would strongly suggest she goes back to the ER in light of the symptoms and be evaluated by a gasto at the very least or ideally a hepatologist.
We are not doctors here,however it would seem that just starting up her treatment again at this point may be futile and given the symptoms possibly even dangerous..
I wish the both of you good luck and please let us know how she is doing..
Will
In regards to your mom; I would agree with the two posters above that have mentioned that interruption of treatment drugs is not advised ,especially when it concerns the new medications(Victrelis or Incivek) There are strict prescribing protocols in place in order for patient to not have futile treatments with the possibility of "resistance issues"
Turning "mustard yellow" defecating and vomiting blood are not normal side effects of this therapy and your mom needs to be evaluated at the earliest possible time by a knowledgeable doctor in HCV and experienced with the treatment protocols. You have not mentioned the state of your moms liver ,however if she is chirrotic these conditions you mention can be life threatening.
If her doctor is unwilling or unable to attend to her forwith I would strongly suggest she goes back to the ER in light of the symptoms and be evaluated by a gasto at the very least or ideally a hepatologist.
We are not doctors here,however it would seem that just starting up her treatment again at this point may be futile and given the symptoms possibly even dangerous..
I wish the both of you good luck and please let us know how she is doing..
Will
She may be able to restart the Ribavirin and the Interferon.
Once the Incivek (or Victrellis) is stopped, it is not supposed to be restarted. If a person misses one dose, it can be continued, but your Mom missed 6 doses, so she missed 3 days of pills. If a person misses doses of the Incivek (or Victrellis) and then restarts, resistant strains can build up.
However, from your last post, it seems her most urgent problem is dealing with her low blood counts, her dehydration, and her bleeding (coughing up blood and passing blood in the stools). These problems seem serious to me. Did the ER know she was coughing up blood and passing bloody stools? If your mother has cirrhosis, she may be coughing up blood from bleeding esophageal varices. In my opinion, someone needs to address these problems now. If the treating doc won't call back, you probably need to return to the ER. Coughing up blood and passing blood in the stools can be very serious. They can be life-threatening. Her problems need to be addressed.
I wish you the very best of luck and hope your Mom improves soon.
Once the Incivek (or Victrellis) is stopped, it is not supposed to be restarted. If a person misses one dose, it can be continued, but your Mom missed 6 doses, so she missed 3 days of pills. If a person misses doses of the Incivek (or Victrellis) and then restarts, resistant strains can build up.
However, from your last post, it seems her most urgent problem is dealing with her low blood counts, her dehydration, and her bleeding (coughing up blood and passing blood in the stools). These problems seem serious to me. Did the ER know she was coughing up blood and passing bloody stools? If your mother has cirrhosis, she may be coughing up blood from bleeding esophageal varices. In my opinion, someone needs to address these problems now. If the treating doc won't call back, you probably need to return to the ER. Coughing up blood and passing blood in the stools can be very serious. They can be life-threatening. Her problems need to be addressed.
I wish you the very best of luck and hope your Mom improves soon.
Protocol suggests that she will not be able to restart the incivek (purple pills) because of resistance issue's, she should be able to continue on with the shots and the other pills as long as there is no medical reason for her to stop. This really should be discussed with her treating doctor, we are not doctors only patients, If I were you I would call every 5 min until I got a response from the doc or camp out in there lobby until someone payed attention.
We got No response from her Dr. and since the treatment is so new all have seen stated these were normal side effects of her treatment... Yesterday afternoon she turned mustard seed yellow we called the hot line, they said she was being administered to much at once and needed to go to urgent care?? The ER said her red and white cells were way down, she was dehydrated, and ran a bunch of test. Sent us home and said to follow up with the dr. who will not return a dang phone call for results..
So...She was on day 15 when she started coughing and pooing blood and stopped treatment, she has missed 6 doses and one shot. Are you guys saying that she may not be able to pick it back up? Is there not a residual build up she has in reserves? somewhere? :(
So...She was on day 15 when she started coughing and pooing blood and stopped treatment, she has missed 6 doses and one shot. Are you guys saying that she may not be able to pick it back up? Is there not a residual build up she has in reserves? somewhere? :(
Thanks. That news is very interesting. I had not seen it yet. Thanks for the link.
I noticed that article is from 2009. If the trials show Incivek is effective at twice daily dosages, I wonder why they are still instructing people to take it three times a day, 7-9 hours apart. And knowledgeable doctors keep sending the message that strict adherance to the med schedules is imperative to avoid developing resistant strains. Hmmm... maybe practice is not keeping up with the research.
I noticed that article is from 2009. If the trials show Incivek is effective at twice daily dosages, I wonder why they are still instructing people to take it three times a day, 7-9 hours apart. And knowledgeable doctors keep sending the message that strict adherance to the med schedules is imperative to avoid developing resistant strains. Hmmm... maybe practice is not keeping up with the research.
After closely observing the hepatitis C drug Telaprevir in a study, Vertex Pharmaceuticals Inc., has confirmed that it works well when administered twice daily as well, instead of the earlier believed dosage of thrice daily. The study confirmed that the drug worked in over 80% of the patients when given two times a day as well.
All earlier tests carried out for Telaprevir had reported that the drug had to be given thrice a day, at regular 8 hour intervals, for it to effectively keep hepatitis C under control. The new study, however, has confirmed that even when given twice, at 12 hour intervals, it would work equally well.
81-85% of the patients involved in the study were earlier on a three times a day routine, shifting them to the twice daily routine, in combination with the standard hepatitis C treatments pegylated-interferon and ribavirin sustained the response they gave to the dosage when administered thrice. The data was presented at the meeting of American Association for the Study of Liver Diseases in Boston.
The study has, according to researchers involved, given much better results than initially expected. "I was expecting around 70 percent", Dr Patrick Marcellin, the study's lead investigator, said. The results of the study are being viewed as a big step in the history of hepatitis C treatment.
http://topnews.us/content/28087-hepatitis-c-drug-telaprevir-effective-twice-daily-dosage-well-vertex
All earlier tests carried out for Telaprevir had reported that the drug had to be given thrice a day, at regular 8 hour intervals, for it to effectively keep hepatitis C under control. The new study, however, has confirmed that even when given twice, at 12 hour intervals, it would work equally well.
81-85% of the patients involved in the study were earlier on a three times a day routine, shifting them to the twice daily routine, in combination with the standard hepatitis C treatments pegylated-interferon and ribavirin sustained the response they gave to the dosage when administered thrice. The data was presented at the meeting of American Association for the Study of Liver Diseases in Boston.
The study has, according to researchers involved, given much better results than initially expected. "I was expecting around 70 percent", Dr Patrick Marcellin, the study's lead investigator, said. The results of the study are being viewed as a big step in the history of hepatitis C treatment.
http://topnews.us/content/28087-hepatitis-c-drug-telaprevir-effective-twice-daily-dosage-well-vertex
I am very sorry to hear about your Mom and Dad. It was be very difficult for you.
It is unclear which drugs your mother was taking, but it sounds like she was supposed to be on the triple medication regimen (Interferon, Ribavirin, and either Incivek or Victrellis).
To answer your question, I am on triple medication treatment with Incivek and it is working well. I have my viral loads checked monthly and they have all been Undetectable since week 8. I am now in week 27.
The side effects can be difficult but most of the more serious side effects can be addressed and treated with prescription drugs. (Anti-nausea drugs for nausea or vomiting, antihistamines and steroid ointments for the rash, meds for diarrhea, meds for low blood counts). Most other side effects (fatigue, malaise, no motivation, hair thinning, aches, etc.) can be tolerated by most people.
I am interested to know which drugs your mother was on. If she was supposed to be on the triple medication regimen, it sounds like she was not taking them correctly. (Incivek and Victrellis must be taken every 8 hours, not every 12 hours.) Also, did the doctor treat her side effects or did he let them go. Whether the doctor treats the side effects can make a huge difference in if the patient can tolerate treatment.
Here are the dosing instructions for the Incivek:
"The usual dose of Incivek is 2 tablets taken 3 times per day, every 7 to 9 hours. Take Incivek within 30 minutes after eating a meal or snack that contains about 20 grams of fat. Always take Incivek with food."
http://www.drugs.com/incivek.html
Here are the dosing instructions for Victrellis:
"Take Victrelis with food. The usual dose of Victrelis is 4 capsules taken 3 times per day, every 7 to 9 hours. "
http://www.drugs.com/victrelis.html
It is unclear which drugs your mother was taking, but it sounds like she was supposed to be on the triple medication regimen (Interferon, Ribavirin, and either Incivek or Victrellis).
To answer your question, I am on triple medication treatment with Incivek and it is working well. I have my viral loads checked monthly and they have all been Undetectable since week 8. I am now in week 27.
The side effects can be difficult but most of the more serious side effects can be addressed and treated with prescription drugs. (Anti-nausea drugs for nausea or vomiting, antihistamines and steroid ointments for the rash, meds for diarrhea, meds for low blood counts). Most other side effects (fatigue, malaise, no motivation, hair thinning, aches, etc.) can be tolerated by most people.
I am interested to know which drugs your mother was on. If she was supposed to be on the triple medication regimen, it sounds like she was not taking them correctly. (Incivek and Victrellis must be taken every 8 hours, not every 12 hours.) Also, did the doctor treat her side effects or did he let them go. Whether the doctor treats the side effects can make a huge difference in if the patient can tolerate treatment.
Here are the dosing instructions for the Incivek:
"The usual dose of Incivek is 2 tablets taken 3 times per day, every 7 to 9 hours. Take Incivek within 30 minutes after eating a meal or snack that contains about 20 grams of fat. Always take Incivek with food."
http://www.drugs.com/incivek.html
Here are the dosing instructions for Victrellis:
"Take Victrelis with food. The usual dose of Victrelis is 4 capsules taken 3 times per day, every 7 to 9 hours. "
http://www.drugs.com/victrelis.html
I see that she has already stopped, she can continue on with interferon and ribavirin if she chooses to as long as there is not a medical reason for stopping.
2 DOSAGE AND ADMINISTRATION
2.1 INCIVEK/Peginterferon Alfa/Ribavirin Combination Treatment
The recommended dose of INCIVEK tablets is 750 mg (two 375-mg tablets) taken orally 3 times a day (7-9 hours apart) with food (not low fat) [see Clinical Pharmacology (12.3) and Patient Counseling Information (17.4)].
For specific dosage instructions for peginterferon alfa and ribavirin, refer to their respective prescribing information.
Duration of Treatment
The recommended duration of treatment with INCIVEK is 12 weeks in combination with peginterferon alfa and ribavirin. HCV-RNA levels should be monitored at weeks 4 and 12 to determine combination treatment duration and assess for treatment futility (Tables 1 and 2).
Dose Reduction
To prevent treatment failure, the dose of INCIVEK must not be reduced or interrupted. Refer to the respective prescribing information for dose modification of peginterferon alfa and ribavirin [see Warnings and Precautions (5.7)].
http://pi.vrtx.com/files/uspi_telaprevir.pdf
Do not stop taking INCIVEK unless your healthcare provider tells you to. If your healthcare provider tells you to stop, you should not start taking it again, even if the reason for stopping goes away
http://www.incivek.com/how-to-take-incivek
She should really speak to her doctor before stopping incivek (purple pills) once she stops she can't start taking it again.
If she is having side effects there are many solutions to help deal with them. You or her can post the side effects she is having and there are many people here with expirience in dealing with them, more than willing to help her get through this.
Have a great day
2.1 INCIVEK/Peginterferon Alfa/Ribavirin Combination Treatment
The recommended dose of INCIVEK tablets is 750 mg (two 375-mg tablets) taken orally 3 times a day (7-9 hours apart) with food (not low fat) [see Clinical Pharmacology (12.3) and Patient Counseling Information (17.4)].
For specific dosage instructions for peginterferon alfa and ribavirin, refer to their respective prescribing information.
Duration of Treatment
The recommended duration of treatment with INCIVEK is 12 weeks in combination with peginterferon alfa and ribavirin. HCV-RNA levels should be monitored at weeks 4 and 12 to determine combination treatment duration and assess for treatment futility (Tables 1 and 2).
Dose Reduction
To prevent treatment failure, the dose of INCIVEK must not be reduced or interrupted. Refer to the respective prescribing information for dose modification of peginterferon alfa and ribavirin [see Warnings and Precautions (5.7)].
http://pi.vrtx.com/files/uspi_telaprevir.pdf
Do not stop taking INCIVEK unless your healthcare provider tells you to. If your healthcare provider tells you to stop, you should not start taking it again, even if the reason for stopping goes away
http://www.incivek.com/how-to-take-incivek
She should really speak to her doctor before stopping incivek (purple pills) once she stops she can't start taking it again.
If she is having side effects there are many solutions to help deal with them. You or her can post the side effects she is having and there are many people here with expirience in dealing with them, more than willing to help her get through this.
Have a great day
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