Hi Neil, my ALT started at 145, dropped to 54 after 8 weeks, and has stayed around that level. I would prefer it to be normal but my doc is not concerned. Evidently PegIFN causes raised enzymes during Rx in some people. There are papers comparing SVR rates for those with normal enzymes and those with elevated enzymes ( up to x2 normal). The SVR rates are the same.
Neil_Canuck said
Oct 24, 2012
I also asked my RN about my other blood levels...platelets, WBC and RBC and he said levels were okay for continuing treatment. However, my enzyme levels are still a bit high and he's hoping they come down by week 24. Is this normal for them to be still high? My VL was 4,000,000 at start of TX.
tomyboy said
Oct 24, 2012
Thank you so much for the advise. Our doctor here wants us to go to the city before starting further treatment. He has been treating my hubby for 15 years and this will be his third attempt at treatment. I don't know why he didn't choose to lower his script. He claims his white blood was too low and the although the hemotologist was giving him nuprigin shots, his counts were't coming up. I feel like dr here is passing the buck. Very discouraging.....I will let him know what you told me.
tomyboy said
Oct 24, 2012
How do I start a new forum...I am a new user and am looking for some answers or to find someone with similar results of my husband. He is geno type 1, was just taken off the triple therapy treatment as his counts crashed. He will be 60 in January. This will be his third attempt. He is using the insivek triple therapy with the inferon and riba treatment. Not sure of the spelling. We are both very upset as he completed 8 weeks of treatment being being taken off.....
tomyboy said
Oct 24, 2012
Hi everyone. My husband is geno type 1 and was on the triple therapy for 8 weeks. He ended up in the hospital after taking too much ambien and was very confused. His white blood counts bottomed out after the first 4 weeks and was taking nuprigin shots from the hemotologist. He just went back to his doctor and the doctor pulled him out of treatment. We thought he would just go back on and finish the last 4 weeks of insivek treatment but he said his immune system was too compromised. Has this happened to anyone else? Our local doctor here is having him to go back to a specialist in the city before he is letting him continue. He is very depressed and discouraged and was hoping maybe someone on here went through the same. He has tried two other times in the past but this new treatment was going to be a positive treatment as it was his geno type and he had previous failed other treatments. I must say he was very moody and tired of eating of the fatty foods at the 7 1/2 hour intervals. He goes to Mt Sinai in January and hopefully he will be able to try treatment again. I assume if he can, he will have to start the entire the 12 week treatment all over again. Does anyone know if you can begin this treatment process again? I really appreciate any information you can give me. His viral count was still 0 this past week.
mallani said
Oct 24, 2012
Hi Neil, we cirrhotics have slightly different rules. We get such a long term exposure to the drugs, particularly if on Vict. rather than Inciv., that we slowly must perfuse our way through the liver. Onwards to 24 weeks!!
Neil_Canuck said
Oct 24, 2012
That's okay Malcolm....your ongoing advice and medical knowledge by far outweighs this minor hiccup. It did cause some concern but when I read "continue treatment" it cleared my mind a bit. I'm not clear yet but I feel that my body has changed in a positive way so the medication is doing something good....lol.
greenqueen said
Oct 24, 2012
Hi Neil and congratulations on your good news
You're absolutely correct and I was wondering where that advice came from. The Triple Therapy Workbook treatment roadmaps are really good for finding out this info.
You can use the "Start New Topic" button to open a new disucussion. or you can continue right here. We see your comments, even if you reopen an old chat from months ago.
Your husband's situation is not unlike so many others we have seen. People have been forced to discontinue the Incivek triple for a number of reasons. Among these are severe rash response and various blood count problems. The Incivek causes the rash response, which can be extremely intense and dangerous. Luckily this is fairly rare. The low white cell counts are typically cause by the peginterferon injectionsm which are used on most treatments today. Many doctors will reduce the dosage of the Pegasys or Pegintron injections temporarily until the white cells come back up. Low red cells and/or hematocrit readings are typically caused by the ribavirin, which can also be reduced to aid in recovery from low red cells. In the Victrelis triple, it sometimes seems the anemia is slightly more of a problem. The neupogen and procrit shots are often used to bring levels closer to normal without reducing the doesages of interferon and ribavirin.
Without more information from the doctor it is difficult to comment on how his decision is based. He obviously felt that the risks outweighed the possible benefits. My advice is to quickly consult with him and find out the chances of continuing treatment and under what conditions. It seems a pity to stop everything at 8 weeks. Perhaps stopping or reducing one or more of the treatment drugs would do the trick. I look forward to responses from some of the others on this forum. There is a wealth of experience here.
Alan
-- Edited by news on Wednesday 24th of October 2012 02:19:43 PM
mallani said
Oct 24, 2012
Hi Neil and Steff, I'm guilty . I was quoting from the Merck Press Release regarding the Respond-2 Phase 3 trial of Victrelis . '... in all arms, patients with detectable HCVRNA at 12 weeks, were discontinued from treatment...'(seelink) . There are a number of other publications changing this to ' >100 '. Sorry if this caused any worries.
www.natap.org/2011/HCV/051811_05.htm
-- Edited by mallani on Wednesday 24th of October 2012 12:57:21 PM
Neil_Canuck said
Oct 24, 2012
I got my week 12 results yesterday and still showing 40 copies. RN says good result and continue on to week 24. I had been informed here that I needed to be UND at week 12 to continue on but the Merkk fact sheet says otherwise. My levels are below 100 IU/ml so therapy continues.
Discontinuation of Dosing Based on Treatment Futility
Discontinuation of therapy is recommended in all patients with:
1) HCV-RNA levels >100 IU/mL at TW 12; or
2) Confirmed detectable HCV-RNA levels at TW 24
-- Edited by Neil_Canuck on Wednesday 24th of October 2012 11:23:01 AM
Hi Neil, my ALT started at 145, dropped to 54 after 8 weeks, and has stayed around that level. I would prefer it to be normal but my doc is not concerned. Evidently PegIFN causes raised enzymes during Rx in some people. There are papers comparing SVR rates for those with normal enzymes and those with elevated enzymes ( up to x2 normal). The SVR rates are the same.
I also asked my RN about my other blood levels...platelets, WBC and RBC and he said levels were okay for continuing treatment. However, my enzyme levels are still a bit high and he's hoping they come down by week 24. Is this normal for them to be still high? My VL was 4,000,000 at start of TX.
Thank you so much for the advise. Our doctor here wants us to go to the city before starting further treatment. He has been treating my hubby for 15 years and this will be his third attempt at treatment. I don't know why he didn't choose to lower his script. He claims his white blood was too low and the although the hemotologist was giving him nuprigin shots, his counts were't coming up. I feel like dr here is passing the buck. Very discouraging.....I will let him know what you told me.
How do I start a new forum...I am a new user and am looking for some answers or to find someone with similar results of my husband. He is geno type 1, was just taken off the triple therapy treatment as his counts crashed. He will be 60 in January. This will be his third attempt. He is using the insivek triple therapy with the inferon and riba treatment. Not sure of the spelling. We are both very upset as he completed 8 weeks of treatment being being taken off.....
Hi Neil, we cirrhotics have slightly different rules. We get such a long term exposure to the drugs, particularly if on Vict. rather than Inciv., that we slowly must perfuse our way through the liver. Onwards to 24 weeks!!
That's okay Malcolm....your ongoing advice and medical knowledge by far outweighs this minor hiccup. It did cause some concern but when I read "continue treatment" it cleared my mind a bit. I'm not clear yet but I feel that my body has changed in a positive way so the medication is doing something good....lol.
Hi Neil and congratulations on your good news
You're absolutely correct and I was wondering where that advice came from. The Triple Therapy Workbook treatment roadmaps are really good for finding out this info.
http://hepcfriends.activeboard.com/t50359233/triple-therapy-workbooks/
All the best for your next labs!
Steff xx
You can use the "Start New Topic" button to open a new disucussion. or you can continue right here. We see your comments, even if you reopen an old chat from months ago.
Your husband's situation is not unlike so many others we have seen. People have been forced to discontinue the Incivek triple for a number of reasons. Among these are severe rash response and various blood count problems. The Incivek causes the rash response, which can be extremely intense and dangerous. Luckily this is fairly rare. The low white cell counts are typically cause by the peginterferon injectionsm which are used on most treatments today. Many doctors will reduce the dosage of the Pegasys or Pegintron injections temporarily until the white cells come back up. Low red cells and/or hematocrit readings are typically caused by the ribavirin, which can also be reduced to aid in recovery from low red cells. In the Victrelis triple, it sometimes seems the anemia is slightly more of a problem. The neupogen and procrit shots are often used to bring levels closer to normal without reducing the doesages of interferon and ribavirin.
Without more information from the doctor it is difficult to comment on how his decision is based. He obviously felt that the risks outweighed the possible benefits. My advice is to quickly consult with him and find out the chances of continuing treatment and under what conditions. It seems a pity to stop everything at 8 weeks. Perhaps stopping or reducing one or more of the treatment drugs would do the trick. I look forward to responses from some of the others on this forum. There is a wealth of experience here.
Alan
-- Edited by news on Wednesday 24th of October 2012 02:19:43 PM
Hi Neil and Steff, I'm guilty . I was quoting from the Merck Press Release regarding the Respond-2 Phase 3 trial of Victrelis . '... in all arms, patients with detectable HCVRNA at 12 weeks, were discontinued from treatment...'(seelink) . There are a number of other publications changing this to ' >100 '. Sorry if this caused any worries.
www.natap.org/2011/HCV/051811_05.htm
-- Edited by mallani on Wednesday 24th of October 2012 12:57:21 PM
I got my week 12 results yesterday and still showing 40 copies. RN says good result and continue on to week 24. I had been informed here that I needed to be UND at week 12 to continue on but the Merkk fact sheet says otherwise. My levels are below 100 IU/ml so therapy continues.
Discontinuation of Dosing Based on Treatment Futility
Discontinuation of therapy is recommended in all patients with:
1) HCV-RNA levels >100 IU/mL at TW 12; or
2) Confirmed detectable HCV-RNA levels at TW 24
-- Edited by Neil_Canuck on Wednesday 24th of October 2012 11:23:01 AM