Hep C Discussion Forum

angelseven · Senior Member

RE: relapsed following harvoni, first treatment attempt... oh well

Tess · Senior Member

Hi Connie - I know what you mean about those bad days now and then. As long as they don't last, we just keep plugging along and make the best of it :) The good days can be darn good! I bet your doggies are a big help!!!

Thanks for the wishes! May 13 will be 12 weeks after EOT. My fingers are crossed.

I hope your knee comes around soon. IMO you're smart to give it some time before deciding to operate or not. We never know what might happen as we shed the drugs and their aftereffects.

Best wishes to you! - Tess

angelseven wrote:

Tess, I sure hope you are SVR!!! I wish it for everyone...and I really kind of hate to talk about relapsing because then it worries other people... There really isn't anything I can do for periodic depression... I tried 5 different antidepressants in the past and they all bothered me... I take ultram for pain , very small dose and it does increase serotonin so I am sure that helps... you know, sometimes I just have a bad day for no reason... the next day is always better!! Bikram yoga helps my mental state a lot!!
Good luck Tess, when will you know if you are SVR??
Tess wrote:
Hi Connie,
I don't know yet if I'll reach SVR, and I hope to have your strength and grace either way. About the depression, have you thought about talking to someone if it doesn't go away soon? No need to deal with it alone!
Take care,
- Tess

Gracie · Guru

It wasn't out then. Not even sure if I can get it now. And I really really really don't want to get the stupid call again that hits you square in the gut "it's back!". Especially last time as I actually had a UND test so thought I had it in the bag. Some of us just have very resistant strains for whatever reason. Glad they are working on why so they can know ahead of time what should work. And my last treatment definitely gave me some lasting aches and pains. These drugs are not without consequences that's for sure.

angelseven · Senior Member

Thanks, you are making me feel better, I am not rushing into that replacement... I have been bone on bone for 15 years and playing tennis with no problem .. no pain... due to good muscles around kneecap... I either tore my IT band or have meniscus tear... these things can heal... I will be contemplating and waiting

I never think about liver cancer at all.. I think because my diet is so clean, I just can't believe that would happen...no meat, no seafrood, gluten, sugar... only white cheese and butter for dairy...

Hang in there Gracie.... we will make it!!! You obviously did some hard treatments.. harvoni wasn't bad at all, for me I am just worried about the side effects that are buried deep inside...and maybe they are limited if non existent.... how come you could not do harvoni??

xoxo, connie

Gracie wrote:
You should think about getting the knee replacement! You'll feel much better after. I've heard that from a couple of people that it helps a lot with pain. And there are pain killers that are not as hard on your liver now. Between f1 and f2 isn't bad at all. You can afford to wait until the new cures come out, and as they go along will know more and more about resistance etc. and customize the cures more.
Some days I still get sad, and every twinge or pain my brain goes to "Liver Cancer!!!". Keeping busy works for the most part. After suffering through two gruelling treatments and having them fail, I'm anxious and scared to try a new one. But the prize at the end is too great for me to give up, so I'll keep fighting until one works!

Gracie · Guru

You should think about getting the knee replacement! You'll feel much better after. I've heard that from a couple of people that it helps a lot with pain. And there are pain killers that are not as hard on your liver now. Between f1 and f2 isn't bad at all. You can afford to wait until the new cures come out, and as they go along will know more and more about resistance etc. and customize the cures more.

Some days I still get sad, and every twinge or pain my brain goes to "Liver Cancer!!!". Keeping busy works for the most part. After suffering through two gruelling treatments and having them fail, I'm anxious and scared to try a new one. But the prize at the end is too great for me to give up, so I'll keep fighting until one works!

angelseven · Senior Member

The literature I read said there was only a 2% difference in SVR rates between people that did 8 or 12 weeks of treatment... if I had waited to treat I would have known more and I might have appealed and fought for 12 weeks but for a 2% difference I did not think it was worth the battle... I was treatment naïve... my viral load was 1.6 million... my fibrosis level was between 1 and 2, in 2011 by a biopsy... my hepatologist thougth it was 2ish as he said ??? by feeling around??? I have probably had the virus for 43 years

I don't even know if solvaldi and GS 5816 would work... what if I am resistant to solvaldi..?? or if I had been...maybe I never would have been clear of the virus and 4 weeks, 8 weeks and 10 weeks?? I wonder if the HCV NS5b subtype sofosbuvir resistance test should be ordered down the road.... My hepatologist knew nothing of this test.. they have one for Led also.. I have read that even though the test shows you are resistance you can still clear the virus....so who knows???

I just don't want to take something again and have it not work... I think the harvoni negatively affected the healing of my knee.. I know a girl that was in the trial of solvaldi and 100 mg of 5816 and she had terrible muscle problems and continues to have problem post treatment although she is SVR as far as I know

I am just not jumping into a treatment fast again, hopefully my liver will let me wait and maybe not, who knows!! I don't know if I need another biopsy soon... Baylor recommends biopsies every 5 years... I wonder if anyone is using a fibroscan here, I will find that out tomorrow... thanks Mallani, you have been very helpful to me through a few emails

OK, enough of my ramblings.... peace, connie

mallani wrote:
Connie,
Many of us have failed treatment, sometimes several times.
Don't despair, your time will come.
Patients who are on the 8 week Harvoni protocol should be made aware their SVR chances are about 5% less, compared to the 12 weekers.
8 weeks should only be CONSIDERED in treatment-naive patients with VL of <6M i.u./ml. I would add that 1a's are more likely to relapse. The ION-3 Trial gives a relapse rate of 7% for 1a's compared with 2% for 1b's.
BTW, how did you get your Fibrosis stage- I forget whether you had a recent biopsy or Fibroscan. Sorry.
With the high SVR rates from the new DAA's, patients expect a great result. Not all will get it.
Wait for Sovaldi/GS-5816. Don't worry about chinese herbs. Cheers.

angelseven · Senior Member

Gracie wrote:
Gracie, wow, you are staying busy, that is what I try to do also... I also got a little crazy doggie about six months ago.. and then I have another one... they keep me really busy!!
I have seen that some people that took harvoni and had problems during treatment such as lung virus... hip problems.... seem to be having more difficulty with these problems post treatment....I just found out I need a knee replacement... I was slightly injured right before treatment, my ortho said to keep playing tennis... well the situation got much worse and now I have been off the tennis court for 2 months... I just feel like the harvoni somehow interered with my knee healing... My ortho doctor told me a few days ago I need a knee replacement... my knees have always been bone on bone, but I kept the muscles strong around the kneecap and I haven't had any trouble since 2003... well this has attributed to my depression.... I am not rushing out and getting a knee replacement... first off, I don't think my liver could handle the pain meds... ugh, I am going to see another ortho doctor and probably reassessing my situation in the fall... I still think the harvoni attributed to my current condition...
Good luck!!! connie

Hi Connie,
It's been a year since I failed my second treatment. I understand the depression. I felt sorry for myself for quite some time and tried very hard to keep very busy. I had aches and pains for a few months after but now they have cleared up. Joint pain in my hip and wrist and shoulder, weird as it jumped around. Now it's much better.
SVR will get around to us future SVR'ers someday. Seems like everybody is putting out new treatments here and there. One of them is bound to work for us!
Besides keeping busy at work, I'm planning a couple of trips, signed up for two 5k races this summer, started volunteering on a couple of boards here in town, and I got a new sweet puppy who makes me laugh every day.
Here's to our continued health!

angelseven · Senior Member

Tess you will probably be SVR, I hope you aren't worried... since you did 12 weeks I would not worry!!!

Tess wrote:
Hi Connie,
I don't know yet if I'll reach SVR, and I hope to have your strength and grace either way. About the depression, have you thought about talking to someone if it doesn't go away soon? No need to deal with it alone!
Take care,
- Tess

angelseven · Senior Member

Tess, I sure hope you are SVR!!! I wish it for everyone...and I really kind of hate to talk about relapsing because then it worries other people... There really isn't anything I can do for periodic depression... I tried 5 different antidepressants in the past and they all bothered me... I take ultram for pain , very small dose and it does increase serotonin so I am sure that helps... you know, sometimes I just have a bad day for no reason... the next day is always better!! Bikram yoga helps my mental state a lot!!

Good luck Tess, when will you know if you are SVR??

Tess wrote:
Hi Connie,
I don't know yet if I'll reach SVR, and I hope to have your strength and grace either way. About the depression, have you thought about talking to someone if it doesn't go away soon? No need to deal with it alone!
Take care,
- Tess

Tess · Senior Member

Hi Connie,

I don't know yet if I'll reach SVR, and I hope to have your strength and grace either way. About the depression, have you thought about talking to someone if it doesn't go away soon? No need to deal with it alone!

Take care,

- Tess

Gracie · Guru

Hi Connie,

It's been a year since I failed my second treatment. I understand the depression. I felt sorry for myself for quite some time and tried very hard to keep very busy. I had aches and pains for a few months after but now they have cleared up. Joint pain in my hip and wrist and shoulder, weird as it jumped around. Now it's much better.

SVR will get around to us future SVR'ers someday. Seems like everybody is putting out new treatments here and there. One of them is bound to work for us!

Besides keeping busy at work, I'm planning a couple of trips, signed up for two 5k races this summer, started volunteering on a couple of boards here in town, and I got a new sweet puppy who makes me laugh every day.

Here's to our continued health!

mallani · Guru

Connie,

Many of us have failed treatment, sometimes several times.

Don't despair, your time will come.

Patients who are on the 8 week Harvoni protocol should be made aware their SVR chances are about 5% less, compared to the 12 weekers.

8 weeks should only be CONSIDERED in treatment-naive patients with VL of <6M i.u./ml. I would add that 1a's are more likely to relapse. The ION-3 Trial gives a relapse rate of 7% for 1a's compared with 2% for 1b's.

BTW, how did you get your Fibrosis stage- I forget whether you had a recent biopsy or Fibroscan. Sorry.

With the high SVR rates from the new DAA's, patients expect a great result. Not all will get it.

Wait for Sovaldi/GS-5816. Don't worry about chinese herbs. Cheers.

angelseven · Senior Member

Thank you

Groupergetter wrote:
Connie, most of us here have been on tx more than once. We have at least some idea of what you are feeling after relapse. Your positive attitude, thankfulness, and inner peace will get you through this........it already has. Thank you for sharing, your hope and optimism is contagious. Be well

Groupergetter · Guru

Connie, most of us here have been on tx more than once. We have at least some idea of what you are feeling after relapse. Your positive attitude, thankfulness, and inner peace will get you through this........it already has. Thank you for sharing, your hope and optimism is contagious. Be well

angelseven · Senior Member

Well, thanks, I will wait and see what happened and forget about it until my next bloodwork... in all these years my viral load never went above 3 million... I know they say it doesn't matter what it is but I wonder about that...I am just feeling depression at this point.............thanks for commenting... I AM grateful, connie/angelseven

Tig56 wrote:
Hi Connie,
It isn't uncommon at all to see your viral load escalate following relapse. It can also reduce as your body recovers from tx. The viral load constantly fluctuates and while it can determine length of tx, it doesn't impact your chance to achieve SVR.
I'm sorry your body is rebelling right now and hope in short order you'll see these unpleasantries diminish. I think Sovaldi and GS5816 is your answer. Good luck and please, never say never!! You'll beat this, just don't give up!

angelseven · Senior Member

Wow, that is an amazing story.... I didn't realize how good I actually felt on the harvoni other than the periodic headaches and constant neck pain but I feel the depression creeping and and joint stuff happening.. that's amazing that you stopped treatment at 6 weeks and achieved svr!!! the reason my digestion is good is because I don't eat sugar, gluten, limited dairy and no meat, .... otherwise I feel bad....

So happy for you......I just won't be rushing into a new treatment again for sure!!

skewedButNotBroken wrote:
I'm so sorry to hear that Connie. I was so sick before I started treatment that I started wondering if I wanted to live or not--that's why I decided to treat because I didn't think I could keep living in misery much longer. I had a rough time on treatment and felt like I was on a mild LSD trip and then started having really bad heart flutters that put me in severe risk of going into cardiac arrest, so I had to stop treatment at 6 weeks instead of the normal 12 weeks for Sovaldi/Olysio. BUT amazingly, I achieved SVR12 and EOT+24 my ALT was 8 and AST was 15.
If I were symptom free as I gather you said you were, I would have never sought out treatment. It's amazing how the virus and the drugs that treat the virus affect people so differently.
My prayers go out to you.

angelseven · Senior Member

Thanks, I will hang in there... I just feel depression creeping in now and other joint issues... I must just ignore it as much as possible!!

Fireman Rob · Senior Member

Aw, I'm so sorry to hear the news, Connie. I'm really glad to see you're in good health otherwise. I read a really interesting article the other day stating that HCV will be eraticated in just a few short years at the rate science is moving.

Don't give up! Your time is coming...

Stay in touch,

-Rob

skewedButNotBroken · Senior Member

I'm so sorry to hear that Connie. I was so sick before I started treatment that I started wondering if I wanted to live or not--that's why I decided to treat because I didn't think I could keep living in misery much longer. I had a rough time on treatment and felt like I was on a mild LSD trip and then started having really bad heart flutters that put me in severe risk of going into cardiac arrest, so I had to stop treatment at 6 weeks instead of the normal 12 weeks for Sovaldi/Olysio. BUT amazingly, I achieved SVR12 and EOT+24 my ALT was 8 and AST was 15.

If I were symptom free as I gather you said you were, I would have never sought out treatment. It's amazing how the virus and the drugs that treat the virus affect people so differently.

My prayers go out to you.

Tig · Admin

Hi Connie,

It isn't uncommon at all to see your viral load escalate following relapse. It can also reduce as your body recovers from tx. The viral load constantly fluctuates and while it can determine length of tx, it doesn't impact your chance to achieve SVR.

I'm sorry your body is rebelling right now and hope in short order you'll see these unpleasantries diminish. I think Sovaldi and GS5816 is your answer. Good luck and please, never say never!! You'll beat this, just don't give up!

angelseven · Senior Member

Nope my viral load after 3 months EOT is right back to where it was...........i just pray it stays here

thanks for your note!!!

angelseven · Senior Member

Hey Gator Guy.... I dunno what i am going to for treatment... pretty upset right now... I just got my bloodwork for 3 months after end of treatment and my viral load is right back to 1.5 million, it was 1.6 before i did treatment... and my alt is out of range by about 5 points... that is also how i was before treatment... i just hope it doesn't all go crazier from here or i will be really upset... I also believe the harvoni interferred with my knee healing... first time in 10 years i have had any problem.... so now my ortho guy tells me i need a knee replacement and i can't even step on the tennis court... ok, so this is the pits for me... i will reevaluate my knee situation in the fall and hope it heals... it seems there are other people that were on Harvoni and had a health issue while on it and the problem seems to have gotten worse.. maybe it somehow interferes with out ability to heal... There are just so many unknowns with these drugs... so I know for SURE i will not take another drug until it has been released and taken by people for at least a year... Honestly i am not sure if i will ever treat again....I may just let "nature take it's course"
thank you for your kind words...

angelseven/connie

Gator Man · Senior Member

Hi Connie,

I was at my one year EOT appointment yesterday and spoke with my doctor about the current revolution in HCV tx. He has experienced relapse with a couple of patients on S/O and Harvoni but is of the belief that re-treatment or one of the next drugs in the pipeline, perhaps GS 5816 mentioned by Tig should work for even the "strangest" of patients. BTW, you're not strange, just a little bit of a tx challenge!

Regardless of what you decide with tx, stay in touch. You have a lot of people in your corner on this forum.

john

bubble · Senior Member

Connie: Look at it this way, treatment should have permanently lowered your VL. Next time will kick it. I was 9mil. before pegasys/riba. It has not fluctuated over 225k in 8 yrs. for me. Now a "Vikerian" 2 weeks in. Feeling much better. You will be cured.

Tig · Admin

Hi Connie,

I'm sorry to hear your news. Bummer... The new drug you spoke of is still in final trials. It's currently called GS 5816. It's for all genotypes and is another one of Gilead's breakthrough treatments. Before you say never again, please at least consider it. You will have another opportunity to kill the beast, take it if you can. Hopefully the approval process will be easier too.

You gave your liver a break and that's always a good thing. Just remember that you did everything you could and did it well. It was the drugs that failed, not you. Keep your spirits high because your turn is coming! We're always here for you. Peace!

Tig

angelseven · Senior Member

Thanks Josh, but at this point, i don't really care about being cured anymore... the virus never affected me to badly ... i may never treat again, but i will stay on top of things.... That's the way i feel 3 months after EOT .... i will continue with clean diet of no meat, no sugar, limited dairy, no gluten... feel fine that way....

peace, angelseven/connie

Josh Haynie · Senior Member

Connie will be cured mark my words ......

shes is to optimistic to let anything get her down....

for too long...

she'll win because she will except nothing less....

and she is a beacon of determination to all those who fight and remain patient....

like me....

angelseven · Senior Member

Yes connie relapsed but don't get all down in the dumps...I did 8 weeks of
treatment, virus undetected after 4 weeks, barely detected at 2 weeks... at
4 week post treatment viral load test... viral load 6,000 or so...
whatever... my liver got a 2 month rest.... if I had done 12 weeks it would
have only increased my chances by 2% .. I knew this and this is why I did
not push for 12 weeks....insurance would not approve 12 and I felt like it
was worth the hassle for 2 percent... There are variants you can have that
prevent the treatment from working...they are Q30, Q30H, w30R, y.93H or n,
L32...

OK, the doctors office did a N53Genotype test which checks for all
variants....so the only one that popped up was the 80K, so they did their
job
80 K is only a factor for solvaldi/olysio
... I am the only one from their office that has relapsed... ... gilead was
in the doctor's office yesterday and they are coming out with another new
drug to go with Solvaldi.... i will have to retreat with that... I will be
waiting... feeling better now

OK, so please don't freak out if you are currently treating, I have
always been a strange person which figures I would have a strange
response... hehehe

I am certainly not rushing into another treatment again... fortunately, I don't think Harvoni did any lasting damage to my body, the treatment was pretty easy...as long as my fibrosis remains low I am waiting and will continue to have no sugar, meat, heme iron, gluten, limited dairy (cheese only) etc

Darn it and CRUD, connie

-- Edited by angelseven on Saturday 21st of February 2015 03:53:05 PM

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