Nurse called Friday and stated that Eprex 40,000 iu is approved and will be picking up on November 5, will self inject and also do Peg injection same time. Blood had dropped to 81 so only dropping slowly, still doing hemo gen and B 12 , C D and Flora Essence, Green Tea, . Did get a shock on Friday afternoon, seen my family doctor, have not seen her for a year as she was off on pregncy leave. She said well how does it feel to be off treatment. and had a plan out lined. I was very surprised since I was still paying for the Peg and Eprex etc. I said that this was news to me and that I had changed nurses lost the 5'3" boil and everything was going much better. Asked the name of new nurse and asked me some more questions, She did get very red in the face and told me that old nurse had called her ten days ago and said she was taking me off treatment because the medication was making me abbrassive. Doctor is only young and she started to laugh when I called the old nurse a drama queen and a control freak. I told her I was complainging to the College of Nurses and she added that I should also complain to Access funding parent about Nurse C. Lavoie's behavior. She called new nurse and confirmed only abbrassiveness is when people lie to me and say they have done their work and have not. That is called not abbrassiveness but incompentancy. Anyways looking forward to boosting hemo up to at least 90 so I can start the Victrelis.
Bill
davesf said
Oct 31, 2012
Hi Bill, the VL is dropping which is excellent. The Riba and Interferon kill the virus. The Victrelis will stop it from replicating so the level will stay low enough for the R & I to hunt down the last varmints extinct instead of it being a race between replication and extermination. I was on the 5 Riba (1000) for my entire treatment. I was 10 weeks in before I realized I should be on 6 (1200) for my weight after reading up on the meds and clinical studies. I elected to stay at 5 because I was still semi functional at work and was worried about falling over the edge if I increased. I'm still clear after 12 weeks and keeping my fingers crossed. But there is plenty of anecdotal evidence of people achieving SVR on reduced regimens. The standard doses are there because that is what was used during the phase 3 trials. But good luck; get that HB up. We want you to add drug number three to increase your odds of SVR success.
All the Best, Dave
mallani said
Oct 31, 2012
Hi Bill, after 7 weeks of double Rx, I'd be pretty keen to start the Victrelis. I'd be demanding a bag of blood but that's just me. The idea of the 4 week leadin is to measure Interferon sensitivity, and to reduce the VL before adding the PI. Hope you get your Hb up soon. Cheers.
2willy said
Oct 30, 2012
In week 7 with just needle and 4 pink pills. did finally get report from Week 4 It said Hepatitis C RNA Viral Load Detected: 9.69 E+3 II/ml Nurse said good because with out treatment it was at 27 then before treatment started was 17 and know down to this number. No Eprex this week so far and Hemo is holding at 82. Still doing the 15 step Marathoon.
Bill
news said
Oct 25, 2012
Yes, Bill the Eprex feels a lot like Peg. Sad thing is, it usually takes a week or two before it really starts working. I did Procrit, which is about the same thing, and in about three weeks I was doing well enough for them to raise the riba dose back up. Good luck with all this. Since you are doing the Victrelis, I don't suppose it really matters when the Victrelis starts. There is always a four week head start, so if four is good, six would be even better.
Alan
2willy said
Oct 24, 2012
Just took first injection of Eprex for hemg level it is at 82 but level as lowered Rib to only 4 per day told not to go on triple until hemg level at least 90. Also went back on Herb suppliments. Side effects of Eprex were same as shot of Peg but only alittle more fever.
Bill
DJ said
Oct 16, 2012
Well stay warm! I am not ready for snow yet. I am hoping to start treatment next month and I am preparing to hibernate for the winter.
2willy said
Oct 16, 2012
I also take Arthrotec 75mg twice daily for my back injuries and shoulder injuries, So side effects were nil for the first two weeks lots of energy, good appeit, no rash a little tired and did not effect driveing. When Hemo started to drop became very tired, walk up stairs 12 steps rest or take a nape, ears sounded like ocean was my heart beat, when hemo hit 84 did not get out of bed a few days. Did drive my self into the hospital and for blood work which is about 100 mile round trip. Before treatment I would walk 3 times a day with my border collies around property, took about 30 minutes. Cannot do that now would take 2 hours and a nap. I live in Northern Ontario Canada so it has snowed once and do not want to be found out their froze. Sometimes my kidneys fell like I have been beaten with a 2 by 4 but if I get moving a little I loosen up. Seem to less energy but will let you know as I started to take B 12 and rib lowered to 4 tablets twice daily
Bill
DJ said
Oct 16, 2012
I am waiting to start the double treatment for Genotype 3, so I will be taking for 6 months what you are currently taking. I was wondering, how are you feeling since starting treatment? What are your side effects so far? How is your energy. Has treatment impacted our ability to drive?
I hope you get clear to start the third part of your treatment soon. I know it must be frustrating waiting. I am so tired of waiting to get started on my treatment. Hopefully next month will be the start for me.
2willy said
Oct 16, 2012
still on one shot per week and 4 rib even though weight 240. Hemo is at 84 and doctor said not to start Victnelis until Hemo is at at least 90... normal range 139-189. Waiting for approval of injections of Eprex 2 per week on my own doing drops for Veggie's and B12. Sent me also for ECG as type 2 diabetic and told could have had mild heart attacks with out knowing. Will get my Virol Load test results in 2 weeks and still doing blood once a week.
Nurse called Friday and stated that Eprex 40,000 iu is approved and will be picking up on November 5, will self inject and also do Peg injection same time. Blood had dropped to 81 so only dropping slowly, still doing hemo gen and B 12 , C D and Flora Essence, Green Tea, . Did get a shock on Friday afternoon, seen my family doctor, have not seen her for a year as she was off on pregncy leave. She said well how does it feel to be off treatment. and had a plan out lined. I was very surprised since I was still paying for the Peg and Eprex etc. I said that this was news to me and that I had changed nurses lost the 5'3" boil and everything was going much better. Asked the name of new nurse and asked me some more questions, She did get very red in the face and told me that old nurse had called her ten days ago and said she was taking me off treatment because the medication was making me abbrassive. Doctor is only young and she started to laugh when I called the old nurse a drama queen and a control freak. I told her I was complainging to the College of Nurses and she added that I should also complain to Access funding parent about Nurse C. Lavoie's behavior. She called new nurse and confirmed only abbrassiveness is when people lie to me and say they have done their work and have not. That is called not abbrassiveness but incompentancy. Anyways looking forward to boosting hemo up to at least 90 so I can start the Victrelis.
Bill
Hi Bill, the VL is dropping which is excellent. The Riba and Interferon kill the virus. The Victrelis will stop it from replicating so the level will stay low enough for the R & I to hunt down the last varmints extinct instead of it being a race between replication and extermination. I was on the 5 Riba (1000) for my entire treatment. I was 10 weeks in before I realized I should be on 6 (1200) for my weight after reading up on the meds and clinical studies. I elected to stay at 5 because I was still semi functional at work and was worried about falling over the edge if I increased. I'm still clear after 12 weeks and keeping my fingers crossed. But there is plenty of anecdotal evidence of people achieving SVR on reduced regimens. The standard doses are there because that is what was used during the phase 3 trials. But good luck; get that HB up. We want you to add drug number three to increase your odds of SVR success.
All the Best, Dave
Hi Bill, after 7 weeks of double Rx, I'd be pretty keen to start the Victrelis. I'd be demanding a bag of blood but that's just me. The idea of the 4 week leadin is to measure Interferon sensitivity, and to reduce the VL before adding the PI. Hope you get your Hb up soon. Cheers.
In week 7 with just needle and 4 pink pills. did finally get report from Week 4 It said Hepatitis C RNA Viral Load Detected: 9.69 E+3 II/ml Nurse said good because with out treatment it was at 27 then before treatment started was 17 and know down to this number. No Eprex this week so far and Hemo is holding at 82. Still doing the 15 step Marathoon.
Bill
Yes, Bill the Eprex feels a lot like Peg. Sad thing is, it usually takes a week or two before it really starts working. I did Procrit, which is about the same thing, and in about three weeks I was doing well enough for them to raise the riba dose back up. Good luck with all this. Since you are doing the Victrelis, I don't suppose it really matters when the Victrelis starts. There is always a four week head start, so if four is good, six would be even better.
Alan
Just took first injection of Eprex for hemg level it is at 82 but level as lowered Rib to only 4 per day told not to go on triple until hemg level at least 90. Also went back on Herb suppliments. Side effects of Eprex were same as shot of Peg but only alittle more fever.
Bill
Well stay warm! I am not ready for snow yet. I am hoping to start treatment next month and I am preparing to hibernate for the winter.
I also take Arthrotec 75mg twice daily for my back injuries and shoulder injuries, So side effects were nil for the first two weeks lots of energy, good appeit, no rash a little tired and did not effect driveing. When Hemo started to drop became very tired, walk up stairs 12 steps rest or take a nape, ears sounded like ocean was my heart beat, when hemo hit 84 did not get out of bed a few days. Did drive my self into the hospital and for blood work which is about 100 mile round trip. Before treatment I would walk 3 times a day with my border collies around property, took about 30 minutes. Cannot do that now would take 2 hours and a nap. I live in Northern Ontario Canada so it has snowed once and do not want to be found out their froze. Sometimes my kidneys fell like I have been beaten with a 2 by 4 but if I get moving a little I loosen up. Seem to less energy but will let you know as I started to take B 12 and rib lowered to 4 tablets twice daily
Bill
I am waiting to start the double treatment for Genotype 3, so I will be taking for 6 months what you are currently taking. I was wondering, how are you feeling since starting treatment? What are your side effects so far? How is your energy. Has treatment impacted our ability to drive?
I hope you get clear to start the third part of your treatment soon. I know it must be frustrating waiting. I am so tired of waiting to get started on my treatment. Hopefully next month will be the start for me.
still on one shot per week and 4 rib even though weight 240. Hemo is at 84 and doctor said not to start Victnelis until Hemo is at at least 90... normal range 139-189. Waiting for approval of injections of Eprex 2 per week on my own doing drops for Veggie's and B12. Sent me also for ECG as type 2 diabetic and told could have had mild heart attacks with out knowing. Will get my Virol Load test results in 2 weeks and still doing blood once a week.
Bill