Yea that is what I thought. Obviously 48 weeks for good reason. I certainly would not want to jeopardise my chances by taking an unproved shortcut.
mallani said
Jul 21, 2014
Hi Paul,
The Victrelis protocol for cirrhotics is well established and available in the Prescribing Information. It is regularly updated. Whatever your Nurse might think, all cirrhotics should do 48 weeks total.
If she wants to change the protocol, I'd ask for some supporting documentation. You will almost certainly stay Undetected at 12 and 24 weeks, and have at least an 80% chance of SVR after 48 (or in your case 49) weeks. The reason for the long Rx duration in cirrhotics has been mentioned several times on the Forum. Cheers.
Paul B said
Jul 21, 2014
mallani wrote:
Hi again Paul,
Just for interest, do a Search of the SVR rates, based on an RVR after 4 weeks of Peg/Riba. The SVR rates for Peg/Riba are the same as for Peg/Riba/Victrelis. You'd save yourself a lot of side effects.
I would have thought that would be the case as well. However, it was not offered as an option though I did mention it in the light of your comment. Given that I am UND @ week 4, you have to wonder about the mechanism of the Boceprivir since there is likely to be only a remnant of the virus remaining, and surely that is being dealt with by the Peg/Rib. I guess that the remnant virions would have little chance against the full triple therapy.
In another unexpected twist, the nurse mentioned the possibility of a reduction in duration of treatment to 36 weeks. May find out more about this at the clinic tomorrow.
I asked the nurse about the possibility of being taken off treatment in accordance with the futility rule at week 12. She responded that it was not something she would expect to occur, which I read to mean it is unlikely that the virus will breakthrough during the intervening period. I read a paper which claimed that out of 22 participants who had experienced re-emergence of the virus by week 24, only 1 had experienced an RVR.
This has been a long tough road. Unlike many who have no symptoms, I have suffered for over 20 years. I hope the drugs work this time, though I do have concerns after my two previous 2 failed attempts.
Huey said
Jul 16, 2014
Two things with that, Lactose and Pro biotics . Go the the store and buy you some pro biotic gummybears , Take those without any dary, See if you react , if you do it is the bacterium in your digestive system and this is most likely due to Gallbladder and or pancreas , and may or may not be an extra hepatic manifestation from the virus.. However this is not common and Lactose intolerance is. You may just need to stay away from Dary. At the start of my Tx i had issues with lactose , glucose, sugar in general. Close to the end I can now tolerate lactose. Supplementing galactosidase" Beano " may help
-- Edited by Huey on Wednesday 16th of July 2014 06:48:15 AM
Paul B said
Jul 16, 2014
So Huey you refer to diet and liver pain. This is something I have been trying to get my head around for ages due to adverse food reactions. One of the foods I seem to react badly to is yogurt... does that fit in with what you know ?
Huey said
Jul 16, 2014
The Vit D issues with HCV are far reaching. there are a lot of independent and dependant variables that need to be addressed. First Woman are at higher risk for Vit D deficiency than men, because of child birth robs the body of Vit D as well as calcium, most folks already supplement Vit D with milk however HCV tends to give you lactose intolerance and Milk my not be digestible by someone with HCV taking away this supplement that most take for granite. The type of diet that a person with HCV would eat to avoid "liver pain" is the same diet that may cause low levels of Vit D. and Riba cause a rash if you get in sunlight too much. so basicly everybody is a little different with this. This is what you pay Doctors for, the complex issues that arrive in any treatment. I would talk to a dietician first to see if you can get the vit D everybody needs naturally then if not , talk supplements.
Isiscat2011 said
Jul 15, 2014
There is a link between hepc and low vitamin d levels. There is also a link between low vitamin d levels and people over the age of 65, darker skinned people, people who live in colder climates, people with diabetes, etc. Naturally, people who have low vitamin d levels would benefit from bringing their levels into a normal range.
My understanding is that you are taking 1000 units per day. If you started taking this amount shortly before or during tx it is extremely doubtful that your vitamin d levels even changed in such a short period of time. I was UND at week 3 on an Interferon based tx and that was when my vitamin d levels were quite low.
The connection you are making is dubious. However, CONGRATS on your UND! That is good news!
Paul B said
Jul 15, 2014
Study after study confirms the benefit of vitamin D supplementation for Hep C sufferers, conversely, I have seen zero studies that contradict this. Additionally, since 1,000 -2,000 ius per day could not possibly contribute to vitamin D toxicity, there can only be either a benefit, or no benefit. In my own case of being UND at week 4, I strongly suspect that supplementing with vitamin D contributed to the result.
Isiscat2011 said
Jul 15, 2014
Paul B wrote:
Don't even second guess it. Do it before your next dose. Vit D3.
Hold on there. You should have your Vitamin D levels checked before adding this supplement. Even the links you posted are talking about reduced SVR in people with low Vit D levels.
I take a Vitamin D supp but that is only because my Vit D levels are low. Also, it takes a significant amount of time to build it up, like months. So, depending on the length of tx, starting while you are on tx probably won't even give it time to increase your serum levels until tx is done.
Paul B said
Jul 15, 2014
Do the research... it's all there. I did, before I even started therapy and came to the conclusion that vit D supplementation is essential. Then, as confirmation, my hep C clinic made a point of telling me that they advise all their patients to take vitamin D.
Vitamin D toxicity is rare and you would need tens of thousand (ius) per day to get to that level.http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/expert-answers/vitamin-d-toxicity/faq-20058108
"The recent findings that low vitamin D serum levels are related to low responsiveness to IFN- based therapy in chronic hepatitis C and that supplementation of vitamin D significantly improved interferon outcomes in these patients led us to surmise that vitamin D may have a direct antiviral effect". (Meital Gal-Tanamy,Larisa Bachmetov,Amiram Ravid,Ruth Koren,Arie Erman,Ran Tur-Kaspa,and Romy Zeme.Vitamin D: An Innate Antiviral Agent Suppressing Hepatitis C Virus in Human Hepatocytes).
-- Edited by Paul B on Wednesday 16th of July 2014 03:29:12 AM
Mopey said
Jul 15, 2014
Thanks Mallani!
mallani said
Jul 15, 2014
Hi Paul,
The advice should be get your Vit D levels checked. If high or high-normal, DON'T take a supplement.
High Vit D levels cause problems of it's own.
Get out in the sun is useful advice.
Certainly take a supplement if your levels are low, and get it rechecked. You may need 3,000 iu/day or more, to lift your levels.
The relationship to Vit D levels and liver fibrosis progression, and the response to Peg/Riba is not accepted by everyone.
Don't even second guess it. Do it before your next dose. Vit D3.
-- Edited by Paul B on Tuesday 15th of July 2014 11:07:42 AM
Mopey said
Jul 15, 2014
Wow, really? I've never heard that before. I will definitely get some today. Thanks!
Paul B said
Jul 15, 2014
Make sure you take vitamin D. The literature suggests it just about doubles your chance of SVR. I take 1,000 iu with my Ribavirin morning and night.
Mopey said
Jul 15, 2014
Hi Paul, congratulations on getting UND after 4 weeks, that's fantastic! I often wonder if I should have pushed harder for a different treatment than the one I'm getting (Interferon + Ribavirin), because it is starting to seem outdated and less effective than others. But it was really the only option being offered to me.
Anyways, best of luck to you as you finish out your treatment.
Paul B said
Jul 14, 2014
Start of week 6 and clinic today. ALT steady at 55, Hb 156, Neutrophils unchanged - .8 and a slight improvement in Platelets - 138.
Starting Victrelis one hour from now.
mallani said
Jul 14, 2014
Hi again Paul,
Just for interest, do a Search of the SVR rates, based on an RVR after 4 weeks of Peg/Riba. The SVR rates for Peg/Riba are the same as for Peg/Riba/Victrelis. You'd save yourself a lot of side effects.
mallani said
Jul 14, 2014
Hi Paul,
Undet. after the leadin is very rare. Congrats! You probably don't need the Victrelis.
To my knowledge, Undet. after 4 weeks of Peg/Riba always led to SVR, but cirrhotics needed 48 weeks to be sure. It'll be interesting to see how you're managed. Cheers.
Paul B said
Jul 14, 2014
I am not happy. Called the Hep C nurse last week... call not returned. Not wanting to be a nuisance I did not try again till 9.00 this morning... tried again at 12.00 and explained that I only wanted to know my PCR result... Call not returned.
Well they can shove their appointment tomorrow. Why should I be treated with complete disdain.
UPDATE:
Results in ..... UND at week 4.
Appointment is back on
-- Edited by Paul B on Monday 14th of July 2014 08:02:48 AM
mallani said
Jul 11, 2014
Hi Paul,
Don't spend too much time reading papers about the old SOC. The antiproteases are a different story.
I agree the ALT drop is good and I had about a 25% drop but it never became normal. Cirrhotics have other causes of ALT elevation other than inflammation.
One comment is worth memorising when, and if , your doctor starts talking Riba reduction. 'Physicians may be advised to maintain a higher Ribavirin dose to increase the likelihood of SVR'.
Don't read too much until you get your 4 week VL. Cheers.
Paul B said
Jul 11, 2014
Well after reading this paper... my hopes are all but gone. SVR based on rapid decline of WCC and Neutrophils. (my WCC count was down as well as Neutrophils)
Further investigation continues to indicate that a rapid decline in neutrophils is in fact a positive indication. Also, interferon induced neutropenia is not a cause of infection. No dose reduction for me thanks.
-- Edited by Paul B on Friday 11th of July 2014 10:58:00 AM
mallani said
Jul 10, 2014
Hi Paul,
It's good that you're 'cruising through' at this stage. You won't have problems until your Hb drops below 100. For most people, Peg/ Riba can cut the VL significantly. It's effective against 'wild-type' virus and the polymorphisms. If the VL doesn't drop at least 2 logs after the leadin, you're in trouble. The Victrelis only works on the 'wild-type' virus and RAV's develop within a couple of weeks and take over. That's why Peg/Riba is essential, particularly in the first 12 weeks of Rx. For cirrhotics, my doc and his partners would not consider a dose reduction unless the levels became life-threatening. He doesn't even believe the 80/80 rule.
Don't involve your GP with this- he will be out of his depth.
You can find references about Riba dose reduction having no effect on SVR. Many don't accept this, particularly for cirrhotics.
If you hear the words 'RGT' don't listen. RGT is not for cirrhotics. There have been posts on another Forum about relapse after Rx duration was shortened to 28 weeks, based on an RVR. Cirrhotics need 48 (or 49 for you) weeks for the best chance.
At the moment, your SVR chance as a cirrhotic,CC, prior relapser is 55-70%. If you have an RVR ( Undet. after 9 weeks in your case), the rate goes to 70-80%. Of course, if you are Undet. at 4 weeks, you probably don't need Victrelis. Cheers.
Paul B said
Jul 9, 2014
Mallani I am guessing that on Tuesday after my blood test, they will decide on a course of action. So I believe that they offer no solution to low blood count other than dose reduction. Couldn't I just go to my GP and get a script for whatever I need ? EPO ... Or couldn't my GP organise a transfusion if I needed that.
Having said that, the literature consistently agrees that a 20 % reduction in Rib has no impact on outcome but reduces the burden of treatment... if that is the road they go down. My only concern at this stage is that the virus might gain strength in the period between when I should have started Vic and when I do.
I need to be prepared for Tuesday. As I said before, I have the Vic in the fridge ready to go, so ultimately I have the power to choose my own course of action.
Paul B said
Jul 8, 2014
I am in Hobart. I could barely function the last time I was on treatment it hit me pretty hard, which is why I am so surprised that I am cruising through this time. I am back at the clinic next week so I will endeavour to try and make sense of the reason for their method... I don't think one extra week is going to be too big a deal.
mallani said
Jul 8, 2014
Hi Paul,
What do you mean by 'how poorly I handled Rx' ? Did you have severe Sx from the Interferon or Riba?
From your IP address, I see you are in Launceston, and probably attending Launceston General Hospital. They probably don't have a lot of experience with Victrelis there.
Your 8 week VL has now been stuffed up. I guess it'll have to be 9 weeks. As a cirrhotic, you need 44 weeks of Victrelis, so you now will do 49 weeks of Rx.
Forget your LFT's. The only things that matter now are the VL and your blood parameters. Do some research, as you need to know the options if your platelets, neutrophils or Hb drop. Don't let them reduce Peg. and I wouldn't let them reduce the Riba dose. There are alternatives. Cheers.
Paul B said
Jul 8, 2014
Yea... well the funny thing is that the clinic phoned me 10 minutes before I was about to take my first Victrelis. They inadvertently gave me the drugs earlier today. My initial thought was to hell with it... I am just going to start despite what they say. But I think they have concerns around how poorly I handled tx on the last occasion and want to see what my LFT looks like in a week.
I get where they are coming from so I will go along with the plan with a view to starting next week, and hopefully, with a good VL and PCR report I will be off to a positive start.
mallani said
Jul 8, 2014
That's a drop from 174? Not bad.
You mentioned previously that you had a drop in ALT after starting Rx, but it went up again after relapse.
I don't know what the holdup is- I'd want to start the Victrelis ASAP. Just my thoughts mate.
Paul B said
Jul 8, 2014
Hb was 155.
mallani said
Jul 8, 2014
Hi Paul,
If it was me, I'd be furious. The Victrelis protocol is tried and proven. You've failed Interferon/ Riba before, so I'd be asking what are they playing at! What do they hope to achieve by adding an extra week to the leadin?
You've got the expected drop in platelets and your neutrophils have dropped a lot. What is your Hb?
Don't even look at your GGT. It's very unreliable, but the ALT drop always looks good.
Let us know your VL- hopefully you've got the >2 log. drop. Cheers.
Paul B said
Jul 8, 2014
Blood tests today. Takes a week to get PCR and Viral load results but my LFTs were great. ALT 49 (normal range for this lab 65), AST 48 and GGT which the nurse believes is a very strong indicatior came in at 75 (was 90)
My Platelets dropped from 171 to 123 and Neutrophils from 2.5 to .8. So based on those readings they have decided to give me another week lead in and check out the blood again at that point before commencing Victrelis.
So while I am not certain as to the significance of the numbers, all in all, it seems that I could take this a very strong indication of a potentially positive outcome !
Yea that is what I thought. Obviously 48 weeks for good reason. I certainly would not want to jeopardise my chances by taking an unproved shortcut.
Hi Paul,
The Victrelis protocol for cirrhotics is well established and available in the Prescribing Information. It is regularly updated. Whatever your Nurse might think, all cirrhotics should do 48 weeks total.
If she wants to change the protocol, I'd ask for some supporting documentation. You will almost certainly stay Undetected at 12 and 24 weeks, and have at least an 80% chance of SVR after 48 (or in your case 49) weeks. The reason for the long Rx duration in cirrhotics has been mentioned several times on the Forum. Cheers.
I would have thought that would be the case as well. However, it was not offered as an option though I did mention it in the light of your comment. Given that I am UND @ week 4, you have to wonder about the mechanism of the Boceprivir since there is likely to be only a remnant of the virus remaining, and surely that is being dealt with by the Peg/Rib. I guess that the remnant virions would have little chance against the full triple therapy.
In another unexpected twist, the nurse mentioned the possibility of a reduction in duration of treatment to 36 weeks. May find out more about this at the clinic tomorrow.
I asked the nurse about the possibility of being taken off treatment in accordance with the futility rule at week 12. She responded that it was not something she would expect to occur, which I read to mean it is unlikely that the virus will breakthrough during the intervening period. I read a paper which claimed that out of 22 participants who had experienced re-emergence of the virus by week 24, only 1 had experienced an RVR.
This has been a long tough road. Unlike many who have no symptoms, I have suffered for over 20 years. I hope the drugs work this time, though I do have concerns after my two previous 2 failed attempts.
Two things with that, Lactose and Pro biotics . Go the the store and buy you some pro biotic gummybears , Take those without any dary, See if you react , if you do it is the bacterium in your digestive system and this is most likely due to Gallbladder and or pancreas , and may or may not be an extra hepatic manifestation from the virus.. However this is not common and Lactose intolerance is. You may just need to stay away from Dary. At the start of my Tx i had issues with lactose , glucose, sugar in general. Close to the end I can now tolerate lactose. Supplementing galactosidase" Beano " may help
-- Edited by Huey on Wednesday 16th of July 2014 06:48:15 AM
So Huey you refer to diet and liver pain. This is something I have been trying to get my head around for ages due to adverse food reactions. One of the foods I seem to react badly to is yogurt... does that fit in with what you know ?
The Vit D issues with HCV are far reaching. there are a lot of independent and dependant variables that need to be addressed. First Woman are at higher risk for Vit D deficiency than men, because of child birth robs the body of Vit D as well as calcium, most folks already supplement Vit D with milk however HCV tends to give you lactose intolerance and Milk my not be digestible by someone with HCV taking away this supplement that most take for granite. The type of diet that a person with HCV would eat to avoid "liver pain" is the same diet that may cause low levels of Vit D. and Riba cause a rash if you get in sunlight too much. so basicly everybody is a little different with this. This is what you pay Doctors for, the complex issues that arrive in any treatment. I would talk to a dietician first to see if you can get the vit D everybody needs naturally then if not , talk supplements.
There is a link between hepc and low vitamin d levels. There is also a link between low vitamin d levels and people over the age of 65, darker skinned people, people who live in colder climates, people with diabetes, etc. Naturally, people who have low vitamin d levels would benefit from bringing their levels into a normal range.
My understanding is that you are taking 1000 units per day. If you started taking this amount shortly before or during tx it is extremely doubtful that your vitamin d levels even changed in such a short period of time. I was UND at week 3 on an Interferon based tx and that was when my vitamin d levels were quite low.
The connection you are making is dubious. However, CONGRATS on your UND! That is good news!
Study after study confirms the benefit of vitamin D supplementation for Hep C sufferers, conversely, I have seen zero studies that contradict this. Additionally, since 1,000 -2,000 ius per day could not possibly contribute to vitamin D toxicity, there can only be either a benefit, or no benefit. In my own case of being UND at week 4, I strongly suspect that supplementing with vitamin D contributed to the result.
Hold on there. You should have your Vitamin D levels checked before adding this supplement. Even the links you posted are talking about reduced SVR in people with low Vit D levels.
I take a Vitamin D supp but that is only because my Vit D levels are low. Also, it takes a significant amount of time to build it up, like months. So, depending on the length of tx, starting while you are on tx probably won't even give it time to increase your serum levels until tx is done.
Do the research... it's all there. I did, before I even started therapy and came to the conclusion that vit D supplementation is essential. Then, as confirmation, my hep C clinic made a point of telling me that they advise all their patients to take vitamin D.
Vitamin D toxicity is rare and you would need tens of thousand (ius) per day to get to that level.http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/expert-answers/vitamin-d-toxicity/faq-20058108
"The recent findings that low vitamin D serum levels are related to low responsiveness to IFN- based therapy in chronic hepatitis C and that supplementation of vitamin D significantly improved interferon outcomes in these patients led us to surmise that vitamin D may have a direct antiviral effect". (Meital Gal-Tanamy,Larisa Bachmetov,Amiram Ravid,Ruth Koren,Arie Erman,Ran Tur-Kaspa,and Romy Zeme.Vitamin D: An Innate Antiviral Agent Suppressing Hepatitis C Virus in Human Hepatocytes).
-- Edited by Paul B on Wednesday 16th of July 2014 03:29:12 AM
Thanks Mallani!
Hi Paul,
The advice should be get your Vit D levels checked. If high or high-normal, DON'T take a supplement.
High Vit D levels cause problems of it's own.
Get out in the sun is useful advice.
Certainly take a supplement if your levels are low, and get it rechecked. You may need 3,000 iu/day or more, to lift your levels.
The relationship to Vit D levels and liver fibrosis progression, and the response to Peg/Riba is not accepted by everyone.
http://www.hivandhepatitis.com/2010_conference/easl/docs/0518_2010_b.html
Don't even second guess it. Do it before your next dose. Vit D3.
-- Edited by Paul B on Tuesday 15th of July 2014 11:07:42 AM
Wow, really? I've never heard that before. I will definitely get some today. Thanks!
Make sure you take vitamin D. The literature suggests it just about doubles your chance of SVR. I take 1,000 iu with my Ribavirin morning and night.
Hi Paul, congratulations on getting UND after 4 weeks, that's fantastic! I often wonder if I should have pushed harder for a different treatment than the one I'm getting (Interferon + Ribavirin), because it is starting to seem outdated and less effective than others. But it was really the only option being offered to me.
Anyways, best of luck to you as you finish out your treatment.
Start of week 6 and clinic today. ALT steady at 55, Hb 156, Neutrophils unchanged - .8 and a slight improvement in Platelets - 138.
Starting Victrelis one hour from now.
Hi again Paul,
Just for interest, do a Search of the SVR rates, based on an RVR after 4 weeks of Peg/Riba. The SVR rates for Peg/Riba are the same as for Peg/Riba/Victrelis. You'd save yourself a lot of side effects.
Hi Paul,
Undet. after the leadin is very rare. Congrats! You probably don't need the Victrelis.
To my knowledge, Undet. after 4 weeks of Peg/Riba always led to SVR, but cirrhotics needed 48 weeks to be sure. It'll be interesting to see how you're managed. Cheers.
I am not happy. Called the Hep C nurse last week... call not returned. Not wanting to be a nuisance I did not try again till 9.00 this morning... tried again at 12.00 and explained that I only wanted to know my PCR result... Call not returned.
Well they can shove their appointment tomorrow. Why should I be treated with complete disdain.
UPDATE:
Results in ..... UND at week 4.
Appointment is back on
-- Edited by Paul B on Monday 14th of July 2014 08:02:48 AM
Hi Paul,
Don't spend too much time reading papers about the old SOC. The antiproteases are a different story.
I agree the ALT drop is good and I had about a 25% drop but it never became normal. Cirrhotics have other causes of ALT elevation other than inflammation.
One comment is worth memorising when, and if , your doctor starts talking Riba reduction. 'Physicians may be advised to maintain a higher Ribavirin dose to increase the likelihood of SVR'.
Don't read too much until you get your 4 week VL. Cheers.
Well after reading this paper... my hopes are all but gone. SVR based on rapid decline of WCC and Neutrophils. (my WCC count was down as well as Neutrophils)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659134/
This study seems to say exactly the opposite.
http://www.hivandhepatitis.com/hep_c/news/2010/040910_b.html
Further investigation continues to indicate that a rapid decline in neutrophils is in fact a positive indication. Also, interferon induced neutropenia is not a cause of infection. No dose reduction for me thanks.
-- Edited by Paul B on Friday 11th of July 2014 10:58:00 AM
Hi Paul,
It's good that you're 'cruising through' at this stage. You won't have problems until your Hb drops below 100. For most people, Peg/ Riba can cut the VL significantly. It's effective against 'wild-type' virus and the polymorphisms. If the VL doesn't drop at least 2 logs after the leadin, you're in trouble. The Victrelis only works on the 'wild-type' virus and RAV's develop within a couple of weeks and take over. That's why Peg/Riba is essential, particularly in the first 12 weeks of Rx. For cirrhotics, my doc and his partners would not consider a dose reduction unless the levels became life-threatening. He doesn't even believe the 80/80 rule.
Don't involve your GP with this- he will be out of his depth.
You can find references about Riba dose reduction having no effect on SVR. Many don't accept this, particularly for cirrhotics.
If you hear the words 'RGT' don't listen. RGT is not for cirrhotics. There have been posts on another Forum about relapse after Rx duration was shortened to 28 weeks, based on an RVR. Cirrhotics need 48 (or 49 for you) weeks for the best chance.
At the moment, your SVR chance as a cirrhotic,CC, prior relapser is 55-70%. If you have an RVR ( Undet. after 9 weeks in your case), the rate goes to 70-80%. Of course, if you are Undet. at 4 weeks, you probably don't need Victrelis. Cheers.
Mallani I am guessing that on Tuesday after my blood test, they will decide on a course of action. So I believe that they offer no solution to low blood count other than dose reduction. Couldn't I just go to my GP and get a script for whatever I need ? EPO ... Or couldn't my GP organise a transfusion if I needed that.
Having said that, the literature consistently agrees that a 20 % reduction in Rib has no impact on outcome but reduces the burden of treatment... if that is the road they go down. My only concern at this stage is that the virus might gain strength in the period between when I should have started Vic and when I do.
I need to be prepared for Tuesday. As I said before, I have the Vic in the fridge ready to go, so ultimately I have the power to choose my own course of action.
I am in Hobart. I could barely function the last time I was on treatment it hit me pretty hard, which is why I am so surprised that I am cruising through this time. I am back at the clinic next week so I will endeavour to try and make sense of the reason for their method... I don't think one extra week is going to be too big a deal.
Hi Paul,
What do you mean by 'how poorly I handled Rx' ? Did you have severe Sx from the Interferon or Riba?
From your IP address, I see you are in Launceston, and probably attending Launceston General Hospital. They probably don't have a lot of experience with Victrelis there.
Your 8 week VL has now been stuffed up. I guess it'll have to be 9 weeks. As a cirrhotic, you need 44 weeks of Victrelis, so you now will do 49 weeks of Rx.
Forget your LFT's. The only things that matter now are the VL and your blood parameters. Do some research, as you need to know the options if your platelets, neutrophils or Hb drop. Don't let them reduce Peg. and I wouldn't let them reduce the Riba dose. There are alternatives. Cheers.
Yea... well the funny thing is that the clinic phoned me 10 minutes before I was about to take my first Victrelis. They inadvertently gave me the drugs earlier today. My initial thought was to hell with it... I am just going to start despite what they say. But I think they have concerns around how poorly I handled tx on the last occasion and want to see what my LFT looks like in a week.
I get where they are coming from so I will go along with the plan with a view to starting next week, and hopefully, with a good VL and PCR report I will be off to a positive start.
That's a drop from 174? Not bad.
You mentioned previously that you had a drop in ALT after starting Rx, but it went up again after relapse.
I don't know what the holdup is- I'd want to start the Victrelis ASAP. Just my thoughts mate.
Hb was 155.
Hi Paul,
If it was me, I'd be furious. The Victrelis protocol is tried and proven. You've failed Interferon/ Riba before, so I'd be asking what are they playing at! What do they hope to achieve by adding an extra week to the leadin?
You've got the expected drop in platelets and your neutrophils have dropped a lot. What is your Hb?
Don't even look at your GGT. It's very unreliable, but the ALT drop always looks good.
Let us know your VL- hopefully you've got the >2 log. drop. Cheers.
Blood tests today. Takes a week to get PCR and Viral load results but my LFTs were great. ALT 49 (normal range for this lab 65), AST 48 and GGT which the nurse believes is a very strong indicatior came in at 75 (was 90)
My Platelets dropped from 171 to 123 and Neutrophils from 2.5 to .8. So based on those readings they have decided to give me another week lead in and check out the blood again at that point before commencing Victrelis.
So while I am not certain as to the significance of the numbers, all in all, it seems that I could take this a very strong indication of a potentially positive outcome !