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Post Info TOPIC: Happy New Year and happy to finally be here!
Cinnamon Girl


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Happy New Year and happy to finally be here!
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Roey wrote:

Hi jill and Tig56,  I don't know if you both remember me, but in the event that you do, It was a wonderfully secure feeling to see that you both are still here being the administrators.  What incredible, unselfish people you both are.  Okay well at the end of April It was 6months without Harvoni and it actually said on the lab results undected for Hep C.  Truly unbelievable,  I thought that I was going to die from this dragon.  With the help from you both supporting me thru before I started Harvoni til the end you have both been there for me.  My question is,  have any of the peeps from 6 months to 1 year ago EOT spoken about any problems that Harvoni did to their other organs?  Like bladder, or kidneys?   Im suppose to have a cystoscopy for my bladder,  and until I found a Doc that would give me general anesthesia, I thought I would go nuts finding one but with the help of my mom,  who passed away July31, 2015.  It sounds crazy, I know, but every Dr. said no.  They only administer locals.  I found a list of urologists, this particular one had the same last name as my Mom's maiden name, so I called him, and voila he gives general anesthesia.  Just had to share this with you both.  I wish everyone on this site a Happy and Healthy New Year 2016!  Roey :Hugs going out to you!

 Hi Roey, good to hear from you, and of course we remember you! 

Great to hear your viral load is still undetected, congratulations on SVR24, that is wonderful news!! 

Like Tig, I haven`t come across any reports of any issues relating to internal organ like bladder or kidneys that have occurred post Harvoni, and I think it`s quite likely that your current problem is unrelated to your treatment, although of course we can never say that for sure, especially with such a relatively new drug.  I`m glad you found a urologist who suits you, and I wish you all the best of luck with your cystoscopy.

Thanks for your kind words, and all the best to you for a very happy and healthy 2016!  We`ll be pleased to hear from you again any time you feel like stopping by!  smile

.



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Shadowfax


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Tig56 wrote:

Hi SF,

Please feel free to start a new thread in the On Treatment section if you would like. I would keep the title simple so it's easy for our search function to categorize. I would try HBV/HCV Coinfection if that fits your need. 

          Hi Tig56,

          Thank you and that sounds perfect. I will do exactly that! Have a great day/evening.

 

 



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Tig


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Hi Roey,

Of course I remember you! It's so nice to hear from you and we so appreciate the kind words you share. Congratulations on your SVR24, big WOOT!! That's what we like to hear!

The reports of short and long term side effects post Harvoni are just now filtering in. I'm not aware of any information regarding urinary tract problems from it, but will keep a look out for anything. The biggest complaints seem to be joint and muscle pain. Most have said that improvements are coming with time following EOT. Some have experienced no issues at all, so I think it's going to be more individual responses to it than widespread. By the time they figure it out we'll have another half dozen new protocols to watch! It's all coming fast lately. I hope they can figure out the "Silver Bullet" treatment soon. It's better than ever before, so lets keep our fingers crossed that it happens soon!

Stay in touch, it's always nice to hear these good reports from our Veteran members!!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Roey


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Hi jill and Tig56,  I don't know if you both remember me, but in the event that you do, It was a wonderfully secure feeling to see that you both are still here being the administrators.  What incredible, unselfish people you both are.  Okay well at the end of April It was 6months without Harvoni and it actually said on the lab results undected for Hep C.  Truly unbelievable,  I thought that I was going to die from this dragon.  With the help from you both supporting me thru before I started Harvoni til the end you have both been there for me.  My question is,  have any of the peeps from 6 months to 1 year ago EOT spoken about any problems that Harvoni did to their other organs?  Like bladder, or kidneys?   Im suppose to have a cystoscopy for my bladder,  and until I found a Doc that would give me general anesthesia, I thought I would go nuts finding one but with the help of my mom,  who passed away July31, 2015.  It sounds crazy, I know, but every Dr. said no.  They only administer locals.  I found a list of urologists, this particular one had the same last name as my Mom's maiden name, so I called him, and voila he gives general anesthesia.  Just had to share this with you both.  I wish everyone on this site a Happy and Healthy New Year 2016!  Roey :Hugs going out to you!



__________________

roey

 

 

 

58 y o female genotype 1a naive to treatment, 2-1-15 start Harvoni 
Tig


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Hi SF,

Please feel free to start a new thread in the On Treatment section if you would like. I would keep the title simple so it's easy for our search function to categorize. I would try HBV/HCV Coinfection if that fits your need. 

If anyone has a specific idea or request, please feel free to contact anyone on the Admin team for guidance and we'll do our best to address it promptly. Thanks!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Shadowfax


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Hi Linuxter,

I believe you are right and I will do just that in the thread you mentioned.  I have researched about co-infections like I have and in fact there are many people with it. The question is whether they have been diagnosed with it but it does seem the two quite often end up in the same place.

I will start a bit later today and at the very least detail what I know now based on the information from my doctor and what I have read.

I hope you are able to start your road to SVR soon as well. Thank you and everyone for their valuable input. I only hope I may be as much help to others as you have all been.

 

P.S.  SF seems to work well

 

 



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Linuxter


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Hi SF,

Since your Tx will be specific to your co-infection and unique you may just want to just make "your own title" and post in "On Treatment" once you are indeed, on treatment. I doubt, however, if anyone will mind if you start a thread there (a placeholder, if you will) with some details of your journey so far and add to that as you find out more and progress through your treatment.

I'd feel free to post what and where YOU feel it best, it's your journey and we'll come along for the ride. I can't speak for admin but I think they will support whatever you decide is the best place to post.

 

Be Well,

Linux



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Shadowfax


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I am about to start a new topic in another thread to chronicle my journey and provide information regarding my unique circumstances regarding HCV and HBV co-infection. I will write what I know and update it as I learn more and start treatment. 

 

Cheers.

Now I just need to find the right place to do this. I should be on the Harvoni Train and then some ...



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Shadowfax


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Hi Tig56,

Thank you for the information. I have had only one Fibroscan and it was in September of 2015. It was with that artillery along with other blood tests that allowed my doctor to have Harvoni approved for me through exceptional access or one of the other vehicles they use for those who cannot afford it.

I suspect the team I will meet up with in three weeks will talk more with me and then proceed based on my recent and long history of lab work and another test or so if they feel the requirement.  It is only then that I understand, with their input that my Dr. will take over again. Having said that, they in fact may want to run the show. I hope not since they are hours away from here and the travel back and forth would be no fun. I will of course do what I must.

 

Cheers

 



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Tig


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Hi Shadow,

I want to point out that if you had a single (?) Fibroscan diagnosis of cirrhosis, you need to get that confirmed if it has been awhile. Fibroscan has some distinct limitations at the low and high end of the fibrosis staging scale. They have improved things a bit, but there are some variables like the technology and the sonographer's skill that can impact the score. Might be worth investigating.



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Shadowfax


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Hi Cinnamon Girl,

Thank you as well for your welcome and I will post my status for sure as well as try to help others when there is something I am knowledgeable about. I may only be starting treatment soon (I anticipate)  but I have been researching HCV since 2001 when I was first told I had that as well.

Mike, It will be interesting to see what they decide for me and it's great to hear that those two drugs have worked well for you. I do understand that the Viread levels can be dramatically increased when taken with Harvoni and play havoc with your Kidneys. I tend to read and research to a fault some may say but to me, ,knowledge is power that is important since doctors unfortunately miss things so we need to watch them as carefully as they watch us.

The perfect example is this forum where I can read what people who are actually on treatment and have the same issues as I do are going through regarding tx and not just what the doctors know or the list of 10,000 possible side effects on the manufactures site.

I never did have a biopsy so the revelation about having cirrhosis was new to me after the Fibroscan. Honestly, I never thought after 45 years of inflammation that I would have no damage but still hoped for the best.

Cheers

 

 

 

 



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Cinnamon Girl


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Hi Shadowfax, welcome from me too!

Thanks for introducing yourself and telling us about your situation, you`ll be in very good company here as you travel through your treatment journey, and we`ll be with you all the way.

Once you`ve started treatment you`re welcome to start a new thread in the `On Treatment` area, or post your updates on the existing Harvoni Treatment Train thread, or both!  There are no set rules, we just want you to feel comfortable and at home here. 

Here`s the link to the Harvoni Treatment Train, please feel free to hop onboard when you`re ready...

http://hepcfriends.activeboard.com/t58762824/all-aboard-for-the-harvoni-treatment-train-enjoy-the-ride-fo/

Wishing you all the best of luck, and a very Happy New Year to you too!  smile

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Shadowfax


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Thank you all for the encouraging words and the exact ****tail I will be given (still unknown) is why I am being sent to the hospital that has a premiere Liver clinic so the best of the best can decide how to best proceed and with exactly what other drug for HBV. Viread was mentioned to me but I do know there are others.

My doctor is an internist, however he does specialize in the Liver but I guess he just wanted to be safe and get advice from those who have done this before and know the most about the co-infection. I don't fault him but the wait especially after being approved for Harvoni for nearly three months is difficult to be sure. 

I will post my experience here as we go along so others who may fall into the same category as me will have something to read about. Having said that, I will look for some courage from this forum as well.

I have read all the information regarding hydration and herbals etc so I am somewhat prepared. I don't take any of those and I take very little other medication but the team will know it all the end of this month and guide me.

Question! I am guessing I should start a new thread on the Harvoni Train one when this starts! Is that correct so we can take it our of the introductory new member thread?

I hope everyone is having or had a great weekend and I will as mentioned be here very often.

 

Cheers!

P.S. I hate taking medication of any kind so ... :)

 

 

 



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
wmlj1960


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Hi Shadowfax.
 I'm glad you finally decided to come out of the 'shadows' biggrin and join us. In my case I have not had any problem with taking Harvoni co-administered with Viread (tenofovir)(TDF). I've been taking the two for 164 days (almost finished with 24 wk Tx) with no problem at all. I take the two 12 hours apart and my doctor keeps an eye on possible toxicity issues. Be sure your doctor monitors this while you are on Harvoni treatment and you should have no problem. I don't take the Viread for HBV, but rather for HIV. The co-administration of Harvoni and ARV regimens containing TDF is associated with increased exposure to TDF, especially when TDF is taken with an HIV PI boosted with either ritonavir or cobicistat. So since this applies less to HBV that's good news for you. Just be sure your doctor AND PHARMACIST are aware of all other medications you take including over-the-counter, and herbal remedy's. Note that herbal remedy's are not a good idea while taking Harvoni or Viread. It is important to stay adequately hydrated while taking both Harvoni and Viread and take with food.
 Let us know what you and your doctor decide on. We're looking forward to having you on board the Harvoni treatment train. smile



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tig


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Hi Shadow,

Welcome to the forum! I'm so glad you've had an opportunity to see your way around the place and happy you finally introduced yourself to our masses, lol! 

I'm sorry to hear you have two dragons to fight simultaneously, one's enough, but it does sound like your healthcare team is on top of it and will prevent any surprises during treatment. Seems like these drug combos have to be handled like a jigsaw puzzle. They work one way or not at all. Thankfully they're getting pretty good at figuring this stuff out, finally! It will be interesting to follow your progress, I'm glad you're here to share the journey.



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Linuxter


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Hi again Shadow,

Yes, if you can put some information in your signature (when you get the time) it's very helpful and keeps everyone from asking you the same questions re: Diagnosis, treatment etc. Sorry you lost some of what you typed, I do that occasionally when my thumb hit's the touchpad then I panic and hit the back button or something and lose it all (I hate it when that happens  crash.gif ) ... ah, but you're here now and explained things quite well considering.

So I've had HCV for over 40 years but didn't know about it until I had some routine blood work done a little over a month and a half ago. (i.e. I don't really know very much about it yet other than some of the basics). I know next to nothing about HBV and didn't realize that chronic HBV can be managed but not cured. I have much to learn about them both.

Congrats on getting approval for the Harvoni, I hope you can go ahead with treating the HCV first but it's good that you have a team working on how to best approach the complicated treatment of both HCV and HBV.

I'm glad that you are posting now, there will certainly be others here that can be of help re: both HCV and HBV. Being in your situation (co-infection) is a lot to bear on your own, I think it will really help to let some of the helpful folks here help you carry some of that.

 

Wishing you well,

Linux



-- Edited by Linuxter on Sunday 3rd of January 2016 12:57:27 PM

__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Shadowfax


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Thank you Linux,

Your welcome and encouraging words are much appreciated.

Shadow

 

 

 

 



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Linuxter


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Hi Shadow,

Welcome to the forum, glad you are here.

As you have already noticed, this is a great place with LOTS of friendly, helpful people.

Feel free to ask any questions that you may have, you're bound to get helpful answers with great information.

 

Again ... Welcome,

Linux

(Edit) p.s. Oh and Happy New Year to you! May your treatment go well and SVR be in your future.



-- Edited by Linuxter on Sunday 3rd of January 2016 02:48:53 AM

__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Shadowfax


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Happy New Year to everyone and their families.

Let me start by saying I have been reading this forum since the summer of 2015 when I found it and it's now my turn to chime in and finally be active. It is a wonderful place to learn and read about others that are in the same place and have been through so much.  Thank you to everyone for just being here.

** I just lost about 30 minutes of typing somehow so I will fast forward this and fill in details as we go along in another post or signature.  **

* Detected Approx 45 years ago

* Co-infection of HCV and HBV (Of course we did not know about the C back then)

* Approved for 12 weeks of Harvoni .. thank you so very much but cannot yet be treated because I must see the specialists at the hospital to enable them to treat me safely since I will have to take something like Viread to control the B and the two drugs don't play nice together. I am really hoping I can do the Harvoni and slay that dragon then move onto the next drug that I understand will be maintenance for the rest of my life.  (I did have the Fibroscan in September and I am F4 cirrhotic) I have been approved for nearly three months patiently waiting for my hospital appointment at the end of this month.

I am very nervous of drugs because of some past history but was very ready to start this one and mainly because of all the great people and support in here. It is fair to say I am not happy about the other issue but such is life and I must do what I must do. I am also hoping that if the C is gone and the B held at bay that my liver may continue to function enough to keep me going longer. At best, I hope it heals some since it has been ravaged for so very long.

I will close for now since my head is spinning trying to think of everything I would like to say and ask. Once again, thank you all for being here, sharing your experiences and giving hope to all that so desperately need to read these things.

Take good care and I will certainly be here often since I have been anyway. 

Shadow

 

 

 

 

 



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
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