Glad to hear you're on the best thing available! It's going to be easier than anything you've been through, so don't worry about the 24 weeks. Taking one pill a day is easy and very effective! So much easier than previous protocols. I remember having to swallow 18 pills a day for 24 weeks after the first month on Peg/Riba. Then there were the injections on top of that, 3 per week.... Geez, those memories never go away.
You'll do it this time, I have no doubt. Start looking forward to that Hep free life now, you've got a lot of healthy living ahead of you! Good luck and don't forget to set a reminder to take that pill at the same time everyday and hydrate, hydrate, hydrate....
Tig
malekula man said
Mar 2, 2015
Hi Jener,
That's fine you have your Harvoni for 24 wks. It gives the best weapon to kill the virus. Harvoni don't cause any terrible side effects like Riba or Peg. I'm on week 8 now and still go well.
Welcome to the train and good luck!
MM
Gator Man said
Mar 2, 2015
Hi Jener,
With very few sx from Harvoni and you having relapsed with Sovaldi/Riba, 24 weeks is a good idea if insurance or Gilead's Support Path will cover it. If you have cirrhosis, which does not appear to be the case, 24 weeks would definitely be the recommendation. The extra 12 weeks would increase the odds of reaching SVR without too much additional effort or impact on quality of life.
Good luck and hope it works out for the entire duration.
Keep us posted.
john
Jener said
Mar 2, 2015
Thank you everyone for the support.
And sorry for the late reply.
I started a new treatment with Harvoni and will start a new post once I begin the lab tests.
My doc wants me to take Harvoni for 24 weeks :(
I wish it was only for 12 weeks.
Matt Chris said
Dec 12, 2014
Hey Jener
Sad to hear of your test result. Its a tough blow I know, but your future has not been completely written yet and there are many more years ahead for you with a successful treatment included.
matt
mallani said
Dec 12, 2014
Hi Jener,
Bad luck. It's obvious that Sovaldi/Riba is not great for Geno 1's.
Take a deep breath and have another go. Harvoni should do the trick. You guys are so lucky to have options. Cheers.
Tig said
Dec 12, 2014
Hey Jener,
I'm sorry to hear your news. You know it wasn't anything you did wrong, it was the drugs that failed. It doesn't help knowing there will be a small percentage of relapsers when it's you that relapses. But you can keep your hopes set on high for the Harvoni protocol because it offers even better odds of success. Until we have a guarantee of 100%, we're going to see this happen. But your odds are very good with the Ledispavir added to the protocol. Take a moment to get back on your feet and then get back into the fight! Never give up, your time is right around the corner! Stay with us and we'll help you kill this beast once and for all! Good luck....
Tig
Cinnamon Girl said
Dec 12, 2014
Oh Jener, I`m so sorry to hear this, how disappointing for you.
We`ve seen this happen to other members too with Sovaldi, not that it`s much consolation right now, I know.
Keep your chin up, you gave it your best shot and the next round should do it.
Onwards and upwards...and all the best of luck with getting your Harvoni approved as quickly and easily as possible.
Keep us posted, you`ll get there in the end!
Jener said
Dec 12, 2014
Well...
I finally got my last blood results.
The virus is back!!!
I'm so disappointed. The doc wrote a prescription for Harvoni and now I'm getting ready to fight with my insurance again.
RonH said
Aug 24, 2014
Jener wrote:
Wow!!!
I can't believe it is the last day of my treatment. So far I have been UND since week 3 1/2. My first check after EOT (which is today) will be this Friday. The doc said he wants to see me "every 4 weeks for lab testing until SVR12 or relapsed, whichever comes first."
I've seen some posts here from people that relapsed after Sovaldi. That's scary.
I'm just hoping to continue UND after today and reach that coveted SVR12.
Hi Jener, This is such a positive result! I have started the meds 5 days ago and I am praying that this does it for me. Keep a positive attitude and keep all of us informed on your progress! This is very positive for me to look at, I was told a 12 week treatment for me, time will tell.
Tig said
Aug 18, 2014
Congratulations on finishing treatment Jener! You finished the hard part, now you need to relax and recover. Good luck!
Tig
Jener said
Aug 18, 2014
Wow!!!
I can't believe it is the last day of my treatment. So far I have been UND since week 3 1/2. My first check after EOT (which is today) will be this Friday. The doc said he wants to see me "every 4 weeks for lab testing until SVR12 or relapsed, whichever comes first."
I've seen some posts here from people that relapsed after Sovaldi. That's scary.
I'm just hoping to continue UND after today and reach that coveted SVR12.
A steady decline in Red Blood Cells, Hematocrit, Hemoglobin.
I'm over the hump now on week 14 of meds, just 10 more weeks to go.
I am a 3a and on week 16 just two weeks ahead of you.
So i can relay say,, Congrats, I know how you feel!:)
Cinnamon Girl said
Jun 12, 2014
Hi Jener, thanks for the update.
Your Hgb levels are dropping steadily which is exactly what you`d expect to see happening after 3 months on Ribavirin. I expect you`re noticing the difference in your energy levels. Great to see your liver enzymes (ALT and AST) going down so well!
All looking good and well done for getting over the half-way mark! Keep going!
Jener said
Jun 11, 2014
Results from week 12:
03/05/2014
03/28/2014
05/01/2014
06/01/2014
SGOT (AST)
86.73
15.99
7.138
15.98
SGPT (ALT)
117.7
17.67
10.6
9.764
APRI
-
0.275
0.116
0.271
Alk. Phos
54.51
47.62
46.35
44.93
Bilirubin
0.922
0.572
1.161
0.895
Creatinine
1.115
1.413
0.815
1.193
Red Blood Cells
4.88
4.42
4.26
4.11
Hematocrit
43.52
39.26
38.32
37.41
Hemoglobin
14.95
13.22
12.83
12.47
Red Cell Size
89.18
88.82
89.95
91.02
Hemoglobin per Cell
30.63
29.90
30.11
30.34
Packed Hemoglobin
34.35
33.67
33.48
33.33
White Blood Cells
3920
3770
4710
3800
Platelets
204
207
219
210
Lymphocyte %
46.9
46.5
46.7
46.80
Neutrophil %
39.6
43.5
42.7
42.80
Basophil %
0.5
0.4
0.3
0.40
Cholesterol
143.2
158.1
197.0
188.1
Triglycerides
68.12
69.41
80.40
84.95
Virus Count
3,626,000
Not D
Not D
Not D
A steady decline in Red Blood Cells, Hematocrit, Hemoglobin.
I'm over the hump now on week 14 of meds, just 10 more weeks to go.
Groupergetter said
May 5, 2014
Great #'s Jener on your way to SVR.
Jener said
May 5, 2014
Results from week 8:
03/05/2014
03/28/2014
05/01/2014
SGOT (AST)
86.73
15.99
7.138
SGPT (ALT)
117.7
17.67
10.6
APRI
-
0.275
0.116
Alk. Phos
54.51
47.62
46.35
Bilirubin
0.922
0.572
1161
Creatinine
1.115
1.413
0.815
Red Blood Cells
4.88
4.42
4.26
Hematocrit
43.52
39.26
38.32
Hemoglobin
14.95
13.22
12.83
Red Cell Size
89.18
88.82
89.95
Hemoglobin per Cell
30.63
29.90
30.11
Packed Hemoglobin
34.35
33.67
33.48
White Blood Cells
3920
3770
4710
Platelets
204
207
219
Lymphocyte %
46.9
46.5
46.7
Neutrophil %
39.6
43.5
42.7
Basophil %
0.5
0.4
0.3
Cholesterol
143.2
158.1
197.0
Triglycerides
68.12
69.41
80.40
Virus Count
3,626,000
Not D
Not D
It looks like I'm getting anemic, thanks Ribavirin.
The high cholesterol is probably due to a late visit to my local Mac D's the night before my test. I know, (Ewwww), but sometimes it happens. :)
I've been feeling a bit tired and get a bit windy if I climb up stairs too fast. But nothing I'm really concern about. Have not had headaches since week 4.
Overall, I feel pretty good and I hope things continue to improve during the next 16 weeks of treatment (gotta do it for 24 weeks since I elect not to take interferon).
My doc ordered a sonogram to check for any scars and overall liver condition. He tells me I'm looking pretty good, though.
Daniel138 said
Apr 11, 2014
Wow, great results! I'm brand new here and just started the Sovaldi/Ribavirin this morning. Fingers crossed.
Cinnamon Girl said
Apr 5, 2014
Fantastic result, Jener, congrats to you! That is really impressive after only three and a half weeks on Sovaldi + Riba, very good going!
Best of luck with the rest of your treatment, and keep us updated!
Loopy Lisa said
Apr 5, 2014
Woohoo, that is motivation, congrats :D
Sara said
Apr 5, 2014
Contrats Jener!
-- Edited by Sara on Saturday 5th of April 2014 02:50:02 PM
OldenSlow said
Apr 4, 2014
Nothing but smiles here, Jener. Delightful news!
Jener said
Apr 4, 2014
Just got my virus count results.
I am undetectable! Just after 3 1/2 weeks of Sovaldi+Riba.
I wasn't expecting this, since I am not taking interferon. I thought it would take longer to get UND.
Needless to say that I am very very happy.
OldenSlow said
Mar 28, 2014
Thanks for the update, Jener. Look like good labs to me. Let us know about that VL check. Expecting to hear UND from you.
wayne
Jener said
Mar 28, 2014
Just got back from the doc. Just about finished 1 bottle of Sovaldi.
Here are my results:
Start
Today
SGOT (AST)
86.73
15.99
SGPT (ALT)
117.7
17.67
APRI
-
0.275
Alk. Phos
54.51
47.62
Bilirubin
0.922
0.572
Creatinine
1.115
1.413
Red Blood Cells
4.88
4.42
Hematocrit
43.52
39.26
Hemoglobin
14.95
13.22
Red Cell Size
89.18
88.82
Hemoglobin per Cell
30.63
29.90
Packed Hemoglobin
34.35
33.67
White Blood Cells
3920
3770
Platelets
204
207
Lymphocyte %
46.9
46.5
Neutrophil %
39.6
43.5
Basophil %
0.5
0.4
Cholesterol
143.2
158.1
Triglycerides
68.12
69.41
Virus PCR Quant: 6,264 (12/11/2013)
Virus PCR Quant: 3,369 (02/19/2014)
Started treatment on 3/5/2014
New viral count due next week. Can't wait.
OldenSlow said
Mar 10, 2014
Interesting that we suffer a disease responsible for more deaths annually than HIV/AIDS, and treatment can be deemed "Not Medically Necessary." Happy you were able to work around it, Jener.
Jener said
Mar 10, 2014
Thank you everyone!
I am really hoping that this will work for me.
My insurance, CareFirst, has denied me Sovaldi after approving the first bottle. Even after appeal process they denied. Their reason was: NO MEDICALLY NECESSARY.
Luckily, I got accepted on the Gilead Support Path's program and am getting Sovaldi again.
Cinnamon Girl said
Mar 8, 2014
Hi Jener, welcome from me too, thanks for introducing yourself, I`m glad you found us! This is a very friendly and supportive group so do feel free to join in the discussions and ask any questions that come to mind, we`re here to help.
Many of us here found out we were infected with Hep C though routine blood tests and I think you were very wise to wait for non-interferon based treatments to become available. The main side effects from this combo are likely to come from the Ribavirin, as Wayne said, and feeling a bit foggy is part of it, but just take it day by day and try to go with it. Side effects vary a lot from person to person and I hope your journey will be a smooth one!
Your base labs look great, and we`ll be interested in following your progress. Wishing you all the best of luck, keep in touch!
OldenSlow said
Mar 8, 2014
Hi Jener and welcome to the forum! Lots of folks are interested, trust me. ;) This is the first wave of real world treatment with the new drugs and there is much comparing of notes. Any information you care to share would be most helpful.
Your numbers look good. The liver enzymes bounce around pre-treatment, anyway. Your blood counts are all within normal range and quite similar to mine at baseline. Expect everything to fall. Your doctor will keep a close eye on the hemoglobin, as that can be problematic for some. I'm assuming 24 week treatment with your genotype, is that correct?
You are going to feel the ribavirin. I doubt anyone gets a free ride on that one. Fatigue, itching, insomnia, sudden mood swings are all common complaints. It varies individually. Stay well hydrated and rest as needed and I'll bet you do great.
There's a wealth of info in the forum's Knowledge Base section. Reading through that will answer a lot of questions. There are many here ready and willing to offer support and answer questions, so don't be shy about asking or commenting or complaining or whatever. You've come to the right place.
Again, welcome and best of luck to you..
wayne
AngieV123 said
Mar 8, 2014
Hello :). I completely understand all about the medication worries. I am the exact same way. When I was prescribed an anxiety med it took me 6 months to even take a crumb of a pill because I was so worked up about side effects. It was a serious mental battle for me to down my first pills for treatment. I did it though and I am almost 2 weeks in. I have pretty much all the same side effects as you have described. Keep us updated on how everything is going for you as you go along. I just watched something on the news about sovaldi this morning and it was very motivating to keep trucking with treatment. This is the good stuff and let's hope we kick hcv to the curb.
Jener said
Mar 8, 2014
I'm just starting treatment on 3/5/2014 and would like to share my progress, if anyone is interested.
I had a lung tumor when I was 10 and got several blood transfusions. And also the virus. I was first diagnosed in 2005 during a full physical exam. At the time, the doctor said that I could wait for treatment. Since then, I've been getting labs done regularly. I'm kind of hypochondriac when it comes to meds. I tend to read all about them before I'm about to take them. And if they have side effects, somehow I convince myself that I'll have them all.
I have low blood sugar and once my sugar drops, I get panic attacks and think I'm about to die.
When I was told about Interferon, I was like, there is no way in hell I can take that. So my doctor and I decided to go with Sovaldi+Ribavirin for my treatment.
My labs before I started:
SGOT (AST): 86.73
SGPT (ALT): 117.7
Red Blood Cell: 4.88
Hematocrit: 43.52
Hemoglobin: 14.95
White Blood Cell: 3,920
Virus PCR Quant: 6,264 (12/11/2013)
My experience so far...
I feel a bit weak and blue. Don't feel like doing much, but it is manageable. No headaches. Strangely, I feel very energetic in the morning and by the end of the day I'm tired and sleepy. I have been sleeping well since I started the treatment and I don't wake up at 3:00am (liver time) anymore. Maybe that is a good sign.
I do feel a bit in a fog, especially at the end of the day. Maybe that has something to do with my low blood sugar. And I also began to experience loose stools, no quite diarrhea.
Anyway, so far the treatment is very tolerable, even though it's been just 3 days. I so hope it will be like this for the weeks to come.
Hey Jener,
Glad to hear you're on the best thing available! It's going to be easier than anything you've been through, so don't worry about the 24 weeks. Taking one pill a day is easy and very effective! So much easier than previous protocols. I remember having to swallow 18 pills a day for 24 weeks after the first month on Peg/Riba. Then there were the injections on top of that, 3 per week.... Geez, those memories never go away.
You'll do it this time, I have no doubt. Start looking forward to that Hep free life now, you've got a lot of healthy living ahead of you! Good luck and don't forget to set a reminder to take that pill at the same time everyday and hydrate, hydrate, hydrate....
Tig
That's fine you have your Harvoni for 24 wks. It gives the best weapon to kill the virus. Harvoni don't cause any terrible side effects like Riba or Peg. I'm on week 8 now and still go well.
Welcome to the train and good luck!
MM
Hi Jener,
With very few sx from Harvoni and you having relapsed with Sovaldi/Riba, 24 weeks is a good idea if insurance or Gilead's Support Path will cover it. If you have cirrhosis, which does not appear to be the case, 24 weeks would definitely be the recommendation. The extra 12 weeks would increase the odds of reaching SVR without too much additional effort or impact on quality of life.
Good luck and hope it works out for the entire duration.
Keep us posted.
john
Thank you everyone for the support.
And sorry for the late reply.
I started a new treatment with Harvoni and will start a new post once I begin the lab tests.
My doc wants me to take Harvoni for 24 weeks :(
I wish it was only for 12 weeks.
Hey Jener
Sad to hear of your test result. Its a tough blow I know, but your future has not been completely written yet and there are many more years ahead for you with a successful treatment included.
matt
Hi Jener,
Bad luck. It's obvious that Sovaldi/Riba is not great for Geno 1's.
Take a deep breath and have another go. Harvoni should do the trick. You guys are so lucky to have options. Cheers.
Hey Jener,
I'm sorry to hear your news. You know it wasn't anything you did wrong, it was the drugs that failed. It doesn't help knowing there will be a small percentage of relapsers when it's you that relapses. But you can keep your hopes set on high for the Harvoni protocol because it offers even better odds of success. Until we have a guarantee of 100%, we're going to see this happen. But your odds are very good with the Ledispavir added to the protocol. Take a moment to get back on your feet and then get back into the fight! Never give up, your time is right around the corner! Stay with us and we'll help you kill this beast once and for all! Good luck....
Tig
Oh Jener, I`m so sorry to hear this, how disappointing for you.
We`ve seen this happen to other members too with Sovaldi, not that it`s much consolation right now, I know.
Keep your chin up, you gave it your best shot and the next round should do it.
Onwards and upwards...and all the best of luck with getting your Harvoni approved as quickly and easily as possible.
Keep us posted, you`ll get there in the end!
Well...
I finally got my last blood results.
The virus is back!!!
I'm so disappointed. The doc wrote a prescription for Harvoni and now I'm getting ready to fight with my insurance again.
Hi Jener, This is such a positive result! I have started the meds 5 days ago and I am praying that this does it for me. Keep a positive attitude and keep all of us informed on your progress! This is very positive for me to look at, I was told a 12 week treatment for me, time will tell.
Congratulations on finishing treatment Jener! You finished the hard part, now you need to relax and recover. Good luck!
Tig
Wow!!!
I can't believe it is the last day of my treatment. So far I have been UND since week 3 1/2. My first check after EOT (which is today) will be this Friday. The doc said he wants to see me "every 4 weeks for lab testing until SVR12 or relapsed, whichever comes first."
I've seen some posts here from people that relapsed after Sovaldi. That's scary.
I'm just hoping to continue UND after today and reach that coveted SVR12.
I am a 3a and on week 16 just two weeks ahead of you.
So i can relay say,, Congrats, I know how you feel!:)
Hi Jener, thanks for the update.
Your Hgb levels are dropping steadily which is exactly what you`d expect to see happening after 3 months on Ribavirin. I expect you`re noticing the difference in your energy levels. Great to see your liver enzymes (ALT and AST) going down so well!
All looking good and well done for getting over the half-way mark! Keep going!
Results from week 12:
A steady decline in Red Blood Cells, Hematocrit, Hemoglobin.
I'm over the hump now on week 14 of meds, just 10 more weeks to go.
Great #'s Jener on your way to SVR.
Results from week 8:
It looks like I'm getting anemic, thanks Ribavirin.
The high cholesterol is probably due to a late visit to my local Mac D's the night before my test. I know, (Ewwww), but sometimes it happens. :)
I've been feeling a bit tired and get a bit windy if I climb up stairs too fast. But nothing I'm really concern about. Have not had headaches since week 4.
Overall, I feel pretty good and I hope things continue to improve during the next 16 weeks of treatment (gotta do it for 24 weeks since I elect not to take interferon).
My doc ordered a sonogram to check for any scars and overall liver condition. He tells me I'm looking pretty good, though.
Wow, great results! I'm brand new here and just started the Sovaldi/Ribavirin this morning. Fingers crossed.
Fantastic result, Jener, congrats to you! That is really impressive after only three and a half weeks on Sovaldi + Riba, very good going!
Best of luck with the rest of your treatment, and keep us updated!
Woohoo, that is motivation, congrats :D
Contrats Jener!
-- Edited by Sara on Saturday 5th of April 2014 02:50:02 PM
Nothing but smiles here, Jener. Delightful news!
Just got my virus count results.
I am undetectable! Just after 3 1/2 weeks of Sovaldi+Riba.
I wasn't expecting this, since I am not taking interferon. I thought it would take longer to get UND.
Needless to say that I am very very happy.
Thanks for the update, Jener. Look like good labs to me. Let us know about that VL check. Expecting to hear UND from you.
wayne
Just got back from the doc. Just about finished 1 bottle of Sovaldi.
Here are my results:
Virus PCR Quant: 6,264 (12/11/2013)
Virus PCR Quant: 3,369 (02/19/2014)
Started treatment on 3/5/2014
New viral count due next week. Can't wait.
Interesting that we suffer a disease responsible for more deaths annually than HIV/AIDS, and treatment can be deemed "Not Medically Necessary." Happy you were able to work around it, Jener.
Thank you everyone!
I am really hoping that this will work for me.
My insurance, CareFirst, has denied me Sovaldi after approving the first bottle. Even after appeal process they denied. Their reason was: NO MEDICALLY NECESSARY.
Luckily, I got accepted on the Gilead Support Path's program and am getting Sovaldi again.
Hi Jener, welcome from me too, thanks for introducing yourself, I`m glad you found us! This is a very friendly and supportive group so do feel free to join in the discussions and ask any questions that come to mind, we`re here to help.
Many of us here found out we were infected with Hep C though routine blood tests and I think you were very wise to wait for non-interferon based treatments to become available. The main side effects from this combo are likely to come from the Ribavirin, as Wayne said, and feeling a bit foggy is part of it, but just take it day by day and try to go with it. Side effects vary a lot from person to person and I hope your journey will be a smooth one!
Your base labs look great, and we`ll be interested in following your progress. Wishing you all the best of luck, keep in touch!
Hi Jener and welcome to the forum! Lots of folks are interested, trust me. ;) This is the first wave of real world treatment with the new drugs and there is much comparing of notes. Any information you care to share would be most helpful.
Your numbers look good. The liver enzymes bounce around pre-treatment, anyway. Your blood counts are all within normal range and quite similar to mine at baseline. Expect everything to fall. Your doctor will keep a close eye on the hemoglobin, as that can be problematic for some. I'm assuming 24 week treatment with your genotype, is that correct?
You are going to feel the ribavirin. I doubt anyone gets a free ride on that one. Fatigue, itching, insomnia, sudden mood swings are all common complaints. It varies individually. Stay well hydrated and rest as needed and I'll bet you do great.
There's a wealth of info in the forum's Knowledge Base section. Reading through that will answer a lot of questions. There are many here ready and willing to offer support and answer questions, so don't be shy about asking or commenting or complaining or whatever. You've come to the right place.
Again, welcome and best of luck to you..
wayne
I'm just starting treatment on 3/5/2014 and would like to share my progress, if anyone is interested.
I had a lung tumor when I was 10 and got several blood transfusions. And also the virus. I was first diagnosed in 2005 during a full physical exam. At the time, the doctor said that I could wait for treatment. Since then, I've been getting labs done regularly. I'm kind of hypochondriac when it comes to meds. I tend to read all about them before I'm about to take them. And if they have side effects, somehow I convince myself that I'll have them all.
I have low blood sugar and once my sugar drops, I get panic attacks and think I'm about to die.
When I was told about Interferon, I was like, there is no way in hell I can take that. So my doctor and I decided to go with Sovaldi+Ribavirin for my treatment.
My labs before I started:
SGOT (AST): 86.73
SGPT (ALT): 117.7
Red Blood Cell: 4.88
Hematocrit: 43.52
Hemoglobin: 14.95
White Blood Cell: 3,920
Virus PCR Quant: 6,264 (12/11/2013)
My experience so far...
I feel a bit weak and blue. Don't feel like doing much, but it is manageable. No headaches. Strangely, I feel very energetic in the morning and by the end of the day I'm tired and sleepy. I have been sleeping well since I started the treatment and I don't wake up at 3:00am (liver time) anymore. Maybe that is a good sign.
I do feel a bit in a fog, especially at the end of the day. Maybe that has something to do with my low blood sugar. And I also began to experience loose stools, no quite diarrhea.
Anyway, so far the treatment is very tolerable, even though it's been just 3 days. I so hope it will be like this for the weeks to come.