Damned if I do, damned if I don't.?

[MobRule]

I was diagnosed with hep c, 1a, stage 3/4 fibrosis back in July/14. My liver is compensating.  I've been working with a leading transplant center in my state. I've been poked, prodded, stuck with needles etc.. My Dr. would like me to treat with Sovaldi, Olysio and Ribavirin, but my insurance company refuses to prescribe the Olysio with this combo. I believe an appeal is being made on my behalf.

I know a new drug is near release but the reality of me having access to it could be several months away. If my appeal(s) are in fact denied, would I be better off taking the Sovaldi, interferon, ribavirin combo for 3 months starting now to hopefully get to SVR or if that doesn't happen give my liver a rest? I am aware of the side effects.

I'm sure all of you have been frustrated with one thing or another in treating this, but I'm worried and a bit scared playing the waiting game. I just don't want to lose any more liver function than I already have. Thanks for letting me ramble on a bit. Any insight you may have would be appreciated.

M

[Sarah1949]

I think the one hour is important. That's because I start feeling lousy 2 hours before my scheduled time. After I take my meds, Sovaldi and Olysio, I feel better within an hour. This makes me think that my body knows when it is that time and so I think it makes a difference. Just me.

[keepingOnkeepingOn]

Good Question

"Should I set my schedule as if it were already standard time or is the one hour time change not that important? "

That would mean those of us on tx will be an hour off for taking meds.

[MobRule]

Update:  Appeal process was painless. Received first delivery of Sovaldi, Olysio and Ribavirin yesterday. I'm probably going to start tx tonight after I figure out what the best schedule is for me. I've read here that its important to take the meds on-time and don't miss any doses. Should I set my schedule as if it were already standard time or is the one hour time change not that important?

Thanks, M

[Dee1956]

Hi there, I think you are so right.  Many of us had to wait for the process. Sometimes it is better to let the system run its course.  Sometimes better to call.
I called and found that my insurance was waiting for some more information from the doctor before approving. So...called the doctor and they sent the additional information.   Then halfway through it was discovered that my insurance had only approved 12 weeks when I needed 24.
I think it was because I was treating in 2011 and 2012.
I wish you the best :)
Dee

[MobRule]

We could have some fun with this....

Patience is a virtue... I won't make any decisions regarding treatment until the appeal(s) run their course.

Cry havoc and let slip the dogs of war... I sure most of us feel or have felt this way before beginning treatment. Note to self:  see above line about patience.

A bird in the hand...Treatment is available now... Note: see above line regarding canines.

Take a deep breath, don't forget to exhale. This brings me back to patience.

Circular arguments with myself. I did say the external signs of illness were minimal.

M

[Dee1956]

Hi there, I don't believe if you fail tx it can cause you to be worse than if you never treated.
After I relapsed the first time, my numbers scared me as well, ALT's AST's in this high 300's.
My hepatologist said it would take time for my body to normalize.  He was right, in 6 month my levels were back to what they were before treating.
He also told me that I had given my liver a break from the assault on it from the HCV.
I am now cured  with my second tx and am very grateful.  The Incivek was very difficult but I could not have waited another 2 years for Sovaldi.

Take care, wishing you the best
Dee

[Livelife777]

Tuff question and as you can see everyone has various views.  It's a very personal decision and one in which you need to weigh the pros and cons.
For me it was an easy choice as my genotype (2) responds well to the Sovaldi/Ribavirin Duo.   Honestly had interferon been suggested along with the other duo, I would have to think long and hard but no one can answer that but you.  
To wait or not to wait (Sounds Shakespearen ).  I've always let my inner compass be my guide and its never steered me wrong.  Along with that research is most important in your decision making,  as knowledge will provide the ultimate answer.
Take Care
....Kim

[hepcandme]

Hey Rule

Just for the record, even though I relapsed on Sovaldi/Olysio, my liver tests - ALT and AST are not dangerously high and my viral load - even though quite high when I began treatment - close to 7 million, it was about 1 million when I did 4 week EOT labs

For the 3 months that I was undergoing treatment, it was undetected and that has to be a good thing

So, what I can gather, stress can make one's ALT go up and I think tx causes some stress so my ALT is elevated (47)

Everything else is fairly normal and has not increased in a way that has caused my doctor or me to become alarmed

Oh, here's a cool thing that I just remembered - during the first week or so of treatment, I felt Great! energetic, almost euphoric

Don't know for sure what caused this but I think it may be that my body was living without Hep C for the first time in decades or there may have been a placebo effect going on as I result of just believing that I would be cured

So, learn all you can, listen to your doctors and get well!

[bluemetal]

Im afraid you misread this entire post from the beginning. It started with MobRule  asking "for any insight you may have would be appreciated."  And in most if not all my replys after giving that "insight" I state to the effect, "but its your call or your doctors" so as not to encourage or mislead based soley upon my insight. I was an attorney for nine years so Im quite aware of legalities and proper phrasing. Aside from that, this forum and site advises everyone from the beginning about "statements made by individuals..." Your reminding us is appreciated.  Thank you.

[pooh55811]

You are missing the point. I see no reason to belabor it further.


To others, especially people on treatment:

I urge people who have concerns and questions about treatment to please look at the facts from accredited drug trials and studies and to please read published research articles written by accredited researchers. That is where the information is contained.

Do not be frightened into not treating by statements made by individual forum members that can not be backed up by credible links/research.

  

[MobRule]

Just to clarify, my liver is not decompensated. It seems to be functioning well enough that the only external physical signs that I have are light pink palms. No sign of jaundice, varices, swelling etc.. My lab numbers  are another story, the Dr. says "I'm not in bad shape for the shape I'm in". I was just reading the fine print of my insurance plan and it appears that I meet the criteria to win an appeal (platelet count 67,000). As far as taking care of myself....I've turned into a Monk with diet restrictions...I do escape the monastery at times when my wife isn't looking. No booze, no smokes.  Thanks for all your input, I'll let you all know what happens..

M

[bluemetal]

I looked at my test results both in hard copy and online through my direct link to  MyGeisinger Records. The viral load and ALT are both skyrocketed from where they were prior to tx. Im sorry if you cant beleive me or this fact. As far as "published research by accredited researchers", sorry again. Im just an online patient stating my factual experiance. Dont let any of this dissuade you or anyone from following their own doctors advice or opinion on this matter. I have however, read other patients posts of the same as well. I beleive them because it also happened to me. wWill the incurred damage reverse itself in time? I hope so.

[bluemetal]

Good article. It points out (amongst other things) real world tx discontinuation rates are attributed to out-of-pocket costs. This fact adds to discontinuation rates on Sov/Olysio attributed to sides and failed SVR after 4-8 weeks into tx.  www.modernhealth care.com/article/20140917/NEWS/309179963/8_of_patients_stop_taking_sovaldi_cvs_study_finds.  In further regars to saltavar query: further damage to liver following a failed tx does not of course apply to everyone. Some people claim to have undergone brutal regims of interferon/rib with cirrhosis for 24 MONTHS, failed SVR and still have as good a liver condition as before tx. Hard to beleive but I guess its possible.

[nan535]

    So sorry you are having these problems post your Sovaldi/Olysio treatment.  What I find is that every patient is different and what may cause no problems for one patient, may cause numerous problems for another.  It all depends on the patient's personal medical history and his/her body's reaction to these drugs.
      I say this based on my husband's reaction to his treatment (Sovaldi/ribavirin 24 weeks). He had a very hard time on treatment due to increased bouts of HE. Most patients  wouldn't have that problem.
He relapsed yet 8  weeks post treatment his VL is still lower than when he started treatment (400,000).  Hopefully , he will start the new combo pill
In November.

Nan


    

[pooh55811]

Please post a link to any published research study results that was done by by accredited researchers in order to validate your claim that treatment with Sovaldi and Olysio make   "the virus will come back thrice as strong within a few short weeks."

[saltavar]

I just posted a question and mentioned you. Maybe the dr. was referring to the current tx I was on. Thanks for responding.

[nan535]

Thought this was timely to this discussion.

http://hepatitiscnewdrugs.blogspot.com/2014/08/hepatitis-c-40-surveyed-specialists.html

[saltavar]

Did you say failed tx will increase the severity of liver fibrosis and speed up the damage process? I asked the head of the GI at MCW and he said no.

[nan535]

     If my husband were in your position, I would probably recommend he wait for the new treatment ( Sovaldi/Ledipasvir combo  pill) which is to be approved for Gt 1a patients on October 10th. It will probably be available in November. The reason you are having problems getting approval is because although they are approved separately, it is considered off label when prescribed together. Both are very expensive drugs.
   The sovaldi/ledipasvir combo pill shows high cure rates in the trial data (without the need for interferon or ribavirin).  There are trials still going on for as little as 8 weeks with this new combo drug.

     I guess the best person to talk to about this is your doctor.

I wish you good luck in reaching SVR whatever you decide.

Nan

[jpfitzer]

I expect a range of supported opinions on your question will be forthcoming soon. In the meantime I will share a bit of my recent experience: I was diagnosed with gt 1b, stage 1, many years ago but received medical council at the time to delay treatment until more effective meds became available, as long as my liver remained healthy. In Feb, 2014 I was somewhat surprised to  learn that my liver disease had progressed to stage 3, compensated. Even with newer drugs in rapid development, my hepatologist recommended i begin tx on Sovaldi, Ribovarin, and interferon asap to avoid further progression... I am now SVR 12 wks post treatment! i know first hand that the side effects can be a bear with this combo, and there is no guarantee of success with any tx, but it was the right decision for me.

Best wishes to you as you weigh your options - whatever you decide, may you attain SVR!

[orphanedhawk]

The first thing that pops into my mind is the obvious~ take good care of your liver now, no matter what else you decide to do. That means no alcohol, Tylenol, Ibuprofen, etc. Try to avoid breathing toxic fumes and eat as healthy, meaning organic and freshly prepared food, as possible Coffee is good and there are studies showing the virus slowing replication when people drink lots of coffee.

Find out whether an appeal is being made or not. Sadly, we have to be our own advocates, make phone calls, be pushy if you need be. The insurance companies have a tendency to first deny anything new. If your doctor orders it, they should not deny it. Have you had your doctor's office contact the insurance company ? Don't sit there and wait. Get moving !

Good luck.
OH