Hep C Discussion Forum

Trip2 · Member

RE: Hello Everyone

Rubye · Senior Member

Hi Trip, Congratulations on finishing treatment.

I also had a doctor who was terrible and so looked him up on that site and yes, he does have a bad record. Makes sense. As soon as I finished treatment I changed to a different doctor but still carry some anger over this last guy. It'll pass though. Anyway, I'm glad you were able to get the treatment you needed in spite of his office.

Matt Chris · Guru

Hey Trip

Congrats on reaching the end of your treatment, depending on how you felt before start of treatment that maybe normal. Hopefully things will turnout SVR and the changes will be more noticeable for you.

matt

Tig · Admin

Hi Trip,

Congrats on completing treatment! I'm sure you're glad to be done with it. I don't think feeling the same way you did before Tx is such a bad thing. As long as you don't feel worse you only have better days ahead and you will. The meds are powerful, regardless of how you're feeling, they do affect your metabolism. My understanding is that both components are cleared from the body quickly, under a week if memory serves me right. It's nothing like the old SOC's that took months to clear. So once that is accomplished and your body returns to normal, there should be some noticeable improvements. Like everything concerning this disease and treatment, it takes time. Everything good is worth the wait. Your investment of both time and energy to achieve this goal will equal success, trust me, I know!

So pat yourself on the back. You have accomplished something important and life changing. Everyone has been successful thus far and there's no reason to believe you will be anything but successful. Stay positive and stay in touch! Good luck Trip...

Tig

Trip2 · Member

Finally completed my 12 weeks of Harvoni treatment, took my last dose yesterday. I have a doctors appointment for February 23rd for blood work. I must be honest and say that as far as my heath goes i do not feel any better or worse than i did before i began treatment, not sure if this is the norm?. One question for the experienced out there, how long does it take for Harvoni to completely leave the body after the end of treatment?

-- Edited by Trip2 on Friday 13th of February 2015 04:03:34 PM

smithsteven4005 · Newbie

Hello guys. this is smith from usa. I am a new member here. I am going to world tour and very much excited about it. Love traveling.

Gator Man · Senior Member

Hi Trip,

Way to go Trip! I only had to battle the insurance company with a very involved and caring doctor on my side! Hopefully all the trauma is in the past and UND/SVR are in the near future. Good luck!

Miss B · Senior Member

Congrats Trip! I am so happy that you were assertive and stood up for your health needs. Pretty sad that you had to convince your doctor that 8 weeks was not adequate.

Tig · Admin

Hi Nick,

Thanks for the doctor finder link, here's another that works the same way and has been my go to link, http://www.healthgrades.com/. Keep your spirits up and know that there are good doctors out there. You'll find one but in the meantime stay on course and finish your meds. Let us know how things progress and know that we're here for you. Hang in there!

Tig

Trip2 · Member

Thanks Again for all of the great support, i have made up my mind that i need to find a new doctor. I have lost faith and do not trust the one that i have. I figure that i will wait until this treatment is completed then make the move.

A friend gave me a website to find top doctors in my area and while searching around the site i found that you can look up doctors disciplinary records and sure enough my doctor made 3 settlements to his patients in just the past few years !

This is not an endorsement but here it is as an FYI:

https://www.castleconnolly.com/index.cfm

Cinnamon Girl · Guru

Well done, Nick, really pleased for you!!

I`m sorry you had to go through this and it must have been so stressful. This is a very good example of why people should take control of their own treatment when things go awry. Don`t be denied!

Big pat on the back, and I hope it`s all plain sailing from now on.

Good luck!

Matt Chris · Guru

Het Trip

Way to go Trip, the fight was worth the trouble and we learned a lot on the way.

matt

Tess · Senior Member

Good for you, Trip!!! Great work advocating for yourself. Many congrats!!! I can imagine how stressed you were, fighting for the approval and watching the clock.

The ten hour delay should be fine. When I wanted to change from a morning to nighttime dosing, the nurse told me to just go ahead and do it; no need to phase it in. So you are good to go.

Kudos to you!

- Tess

Trip2 · Member

This was a huge battle with my doctor and insurance company, my doctor blamed everyone including ME and Obamacare for what happened ! But in the end i got my refill tonight delivered by courier and just took my dose (10 hours late today). A big thanks to all of you guys who encouraged me to stand up for myself to get what i need.

Thank you all !!!

Gator Man · Senior Member

Hi Trip,

There clearly seems to be a disconnect with communications from your doctor which should be his obligation to correct. I don't think it would be acceptable medical care to terminate Tx if you are still detected, even with a VL as low as 56 prior to 12 weeks. If there is an insurance problem, he should inform you of the current status so that you can consider your options regarding an appeal or contacting Gilead's Support Path. The doctor needs to be prepared to assert that 12 weeks is mandatory since you are not UND, and early cessation of Tx would be below the standard of care appropriate to your case.

Keep us posted and good luck.

Tess · Senior Member

In case this might help you or anyone else who wants 12 weeks of Harvoni when their doctor is limiting them to 8 - - tell them that Gilead says that 8 weeks may be considered but it is not the recommended protocol. It might change their mind.

I had a bit of a run-in today with my doctor and that seemed to help. The Dr or his nurse, not sure which, had actually canceled my third 4-week prescription with the pharmacy after the pharmacy already took my order and were ready to overnight it to me. I found that out on the delivery date (yesterday) when I called the pharmacy looking for a tracking number. They said the nurse had called and canceled my script after I placed the refill order. The last time I talked with the nurse, which was a few weeks ago, she confirmed that I would be taking it for 12 weeks. Needless to say I was shocked and more than a little upset, especially that she canceled it without telling me.

I talked with the doctor today and asked why I should only take it for 8 weeks when the pharmacy had approved 12. His answer was that it's what they do with patients with my viral load. I brought up that the protocol is 12 weeks and that they only say 8 weeks may be considered. He eventually agreed to re-start the order for the final 4 weeks and luckily the pharmacy re-approved it.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

-- Edited by Tess on Thursday 15th of January 2015 07:47:04 AM

mallani · Guru

Hi Nick,

I agree with Tig. You were not Undetected on 29th December, so I would be very concerned about only doing 8 weeks. You may get lucky, but you should have the full 12 week course. Best of luck.

Miss B · Senior Member

I agree with Tig. Remember, Gilead is on the west coast so it's 3 hours earlier in California than it is in Ozone Park.

Tig · Admin

Hi Trip,

The most recent results do not indicate an undetectable result. It clearly shows a viral count of 56 IU/ml or 1.75 Log (same thing). But you've had an excellent multi log drop since your pre treatment test. I don't understand how (why) your doctor or insurance company would allow this to happen. He shouldn't be assuming you are undetected even though you may be by now. Your doctor should be burning up the phone lines to your insurance provider! Ending treatment following an obvious detected result and telling you otherwise (without proof) is as wrong as it gets IMO. If there are circumstances you're not being told, they need to be more forthcoming with information. Good luck, let us know what you find out.

Tig

Trip2 · Member

Spoke to my doctors office today, long story short is that my doctor called me back and left a voice mail saying that the appeal to my insurance company is "pending". So i think my doctor lied to me, he told me last week that it was denied. VERY upset right now....

Miss B · Senior Member

Hi Trip2,

The goal is to be undetected & you are not there yet, right? You are close, but not UND. How can you achieve SVR if you are not undetected? Why stop treatment if you are not undetected? Why don't the AASLD Guidelines support the 8 week treatment? Will your insurance company re-treat you? These are the questions I would ask my doctor if I was in your shoes.

If tomorrow is your last pill, I can only say that time is of the essence. If you are going to take action, you have to act asap. I would call Gilead's Support Path too.

I'm not trying to alarm you. I'm not an expert & for all I know your #'s are fine & it's fine for you to end treatment now. But if you are not comfortable then you deserve some answers from your healthcare team.

Good luck!

Trip2 · Member

Pre Treament Results

Trip2 · Member

1 Month of Treatment Results

Trip2 · Member

Hello Everyone

Miss B · Senior Member

Your VL prior to treatment & the fact that this is your 1st treatment would put you in the category where 8 weeks may be considered as listed in the FDA Prescribing Information.

But, if you are not comfortable with 8 weeks, you might want to ask your doctor to explain why the revised AASLD HCVGuidelines recommends 12 weeks & does not say that 8 weeks may be considered. In fact, the AASLD Guidelines questions the post-hoc analysis that improved the success rate of the 8 week treatment protocol of the ION-3 trial.

http://hcvguidelines.org/node/71

However, relapse rates were higher in the 8-week arms (20 of 431) regardless of RBV use compared with the 12-week arm (3 of 216). Post hoc analyses of the 2 RBV-free arms assessed baseline predictors of relapse and identified lower relapse rates in patients receiving 8 weeks of ledipasvir/sofosbuvir who had baseline HCV RNA levels below 6 million IU/mL (2%; 2 of 123), and was the same for patients with similar baseline HCV RNA levels who received 12 weeks (2%; 2 of 131). This analysis was not controlled and thus substantially limits the generalizability of this approach to clinical practice. Shortening treatment to less than 12 weeks should be done with caution and performed at the discretion of the practitioner.

Trip2 · Member

Thanks Tig56, Miss B, Before treatment:

F2-F4

Viral load of 2,596,888

AST 63

ALT 56

This is the first time treated, next Thursday will be my last dose, I will post my 1 month numbers when i get them in the mail.

Thanks Again...

-- Edited by Trip2 on Saturday 10th of January 2015 04:02:40 PM

Tig · Admin

Hi Nick,

I haven't heard of RGT (response guided therapy) being considered with the new protocols but the AASLD guidelines as Miss B has provided indicates the consideration of it. We're beginning to see many reports of FAST response to these medications and as in Skewed's case, entirely successful. Trust in your healthcare team and know we're all pulling and hoping for your own success! Good luck...

Tig

Miss B · Senior Member

I have been denied a 2nd refill by my insurance company, i was told that 8 weeks of treatment will be enough based on my 1 month blood work. I have not yet received the full results from my doctor but he told me that my viral load is very low (undetectable). He also agrees with the insurance company that 8 weeks will be enough.

Can you provide more information about your VL before treatment & have you ever had treatment before? I think that is more relevant that what your viral load is now. If you have never had any treatment before and your VL was less than 6 million before treatment, then 8 weeks *might* be ok.

The official Prescribing Information says that 8 weeks MAY be CONSIDERED for treatment naive patients with VL <6 million. However, it's worth noting that this option is not IN the recommended treatment box, it is a footnote under the box. http://www.accessdata.fda.gov/drugsatfda_docs/label/2014/205834s000lbl.pdf

On the other hand, the new AASLD guidelines cautions, Shortening treatment to less than 12 weeks should be done with caution and performed at the discretion of the practitioner.

http://hcvguidelines.org/node/71

Trip2 · Member

Thanks skewedButNotBroken, i guess i need to keep my fingers crossed and hope for the best ...

skewedButNotBroken · Senior Member

After only six weeks of treatment with Sovaldi and Olysio I had to quit, but still received word today that I made it to EOT+12 SVR. So 8 weeks should do the trick for you. I don't think you have anything to worry about. These new drugs are very powerful.

Trip2 · Member

I have been denied a 2nd refill by my insurance company, i was told that 8 weeks of treatment will be enough based on my 1 month blood work. I have not yet received the full results from my doctor but he told me that my viral load is very low (undetectable). He also agrees with the insurance company that 8 weeks will be enough. My doctors office is mailing me my 1 month results and will post it here.

Any advise on what i should do? should i accept the advise of my doctor? Definitely feeling down...:(

Greg D · Senior Member

Thanks for your question Trip2. If I may expand on your post for a moment, with the type of tx I had, when should I (if at all) test again? My last was done at 24 weeks post treatment. Would blood tests typically be drawn at one year post tx? And just every couple of years after that?

If further testing is required would there be anything else, aside from blood work, to check? For example are further scans, ultrasounds, or another biopsy etc. required to assess my liver's condition now, post treatment?

Sorry I don't have a doctor at the moment as I've recently moved but using drop in clinics for the time being.

Thanks so much in advance for your opinions.

Matt Chris · Guru

Hey Trip

My doctor seemed to think the same way regarding doing away with monthly viral load test.

If your results from your recent tests or UND I would wait for at least until the EOT before another test, then again at 4, 12, 24 weeks post treatment.

matt

Trip2 · Member

Hello Everyone,

So I am now 38 days into treatment and just had my first blood work this morning, will get the results in about a week. Funny think about my conversation with my doctor this morning, I asked him about when i should come back for the next blood work, he told me that he is positive that i have no viral load now and "maybe" take more blood work after the 12 week treatment. I asked that I come back in a month for testing and he said ok if i want to but its not necessary. needless to say, i made an appointment to go back in a month... what do you guys think?

Trip2 · Member

Thanks Harvoninme really appreciate it !

Harvoninme · Senior Member

Trip2 wrote:
Hello,

Well i have passed 12 days of treatment now, I am getting less headaches this week so in that regard i feel better but I am starting to feel very irritable, I also have not noticed any change in brain fog and fatigue since i started treatment. Maybe the stress and anxiety of not knowing the end result of treatment is getting to me...

Have a good day!!!!

It's the fatigue catching up. It was bad for me for a couple weeks, fortunately it's mostly passed. I'm more likely to get tearful now. SEs seem impossible to predict but I have noticed that a few people are reporting more varied SEs as the weeks march by. Hang in there. If ya need someone to just listen, I'm available. :)

Trip2 · Member

Thanks for the kind words and encouragement, weird thing about today, due to a situation at work i took my pill about 3 hours late today, i was also hungry so i had lunch and took the pill right after and guess what, i got a huge headache and some queasiness. Not sure why but just making note of it.... (i have been taking it between breakfast and lunch).

Again, thanks guys :)

Michaele · Guru

If platelets are low I'd avoid the ANSAIDS

Tig · Admin

Hi Nick,

Thats a relief! I have seen this before and it's a sign your body is adjusting well to the medications. Irritability often occurs with many of the protocols and the important thing is to recognize it and do your best to avoid the things that trigger it. There were days I would put myself in "time out" to protect those around me from it! It will pass and just realizing it's happening can bring improvements to your mood and will help calm the irritating element. The stress of treatment can wear on you, so find time to get outside, get some fresh air, and take a walk. That helped me get through some of those moments. Good luck and you're always welcome to come here and vent! We understand....

Tig

Cinnamon Girl · Guru

Hi Trip 2, good to hear that the headaches are easing off now! Being on treatment can be a stressful time for anyone and it`s often difficult to tell what is a side effect of the drugs and what`s not.

Thanks for the update. Take it easy and try not to worry.

Have a good day too! smile

Trip2 · Member

Hello,

Well i have passed 12 days of treatment now, I am getting less headaches this week so in that regard i feel better but I am starting to feel very irritable, I also have not noticed any change in brain fog and fatigue since i started treatment. Maybe the stress and anxiety of not knowing the end result of treatment is getting to me...

Have a good day!!!!

WorriedSo · Member

Dear Trip 2,

Thank you for responding! I am thrilled you have been able to get

these amounts from the bat!

In listening to others, I guess it's not unusual to have a four week

prescription w/ option to refill. and [as you may have read-] I guess, there are a lot of other people in my boat.

This is where some faith will have to do !

Initially, I was terribly excited about my approval just two days ago and thinking it was all ship-shape. Then,as the day wore on and [as usual] couldn't get hold of anyone official-I remembered the discussion group and it has spared me so much trouble.

Thank You, for Being So Kind, as to Tell Me of your Experience!

Glad to, you are feeling Well, YIKES! It's All ~So Precarious!!

Have a Happy Thanksgiving , You Deserve IT! Cheers and God Bless You!

~Eunice~

Tig · Admin

Hi Donna,

Welcome to the forum! Harvoni is the newest of the DAA's and is a single pill combination of Sovaldi and a new drug, Ledispavir. Here is a description of the drug:

http://hepcfriends.activeboard.com/t58859370/harvoni-monograph/

Use our forum search box above, and search the many topics here on the forum as well. You'll learn a lot about it that way and if you have any other questions, leave a question here and we'll be sure to answer it. Good luck!

Tig

Trip2 · Member

Hello Donna, i am also new to this site, there are alot of very informed people here and i am sure someone will answer your question better than i can...

Donna165 · Newbie

I have never heard of Harvoni....what kind of meds is it?

Donna165 · Newbie

I am starting clinical trials of Sovaldi on the 3rd of Dec. Are you taking it?

Trip2 · Member

Wow, i had a really bad pounding headache today - as I said I did take just 1 advil and it went away, could be a side effect i guess.

Eunice - My insurance approved 12 weeks of Harvoni treatment, I received 1 bottle (28 tablets in a factory sealed bottle) with 2 refills. My insurance company told me to call them when i have about 10 days worth left so they can send the refill. They mail it directly to CVS for me to pickup.

My doctor wants me to "donate" some blood for testing 4 weeks into treatment.

Happy Thanksgiving!!!

WorriedSo · Member

Dear Isiscat,

Well, that is a relief-to ~hear~as ,that was my initial reaction,'til

some euphoria wore off. In hind-sight/ I now understand what the

Dr./ Surgeon was meaning ;at first I thought she was being

cryptic.

I~did~ check back w/ the liver desk, this morning-gauging by their

reactions to my news, everyone seems pleased. When I swipe away the

paranoia-everything seems fine. Thank Heaven.

Will read your suggestions again. Thank you-for sparing me much anxiety!

Happy , Happy Thanksgiving!!!! Cheers~Eunice~

Isiscat2011 · Guru

Hi Worried So:

Nobody is receiving more than 4 weeks at a time. That doesn't mean your approval is for only 4 weeks total or that you will not receive any more. Make sure your insurance for 2015 is renewed. Call the pharmacy and ask them to explain your situation to you. If that doesn't give you the answers then call your insurance co. and/or your doc's office. You may need to do a little research to determine what is going on but there is no reason to conclude you will only be receiving 4 weeks of tx.

WorriedSo · Member

Dear Trip2,

This sounds kinda like my situation, except w/ a State insurance-["Medical"]-

the local version of city & county Medicare-type thing!

I am from Brooklyn , originally and have lived here in SF ,since-

1973, when I came out here with my sweetheart. It's been a great ride-

'til he succumbed after 34 fantastic years to Hep C/ MRSA because the hospital didn't know he had Hep C when he had colon surgery.[ I'm still trying to figure ~that~ out; as I discover my

own state of health!] I received a diagnosis of Stage 4 cirrhosis/Class A- about a month

ago and was approved for ~4~ weeks of Harvoni, which I haven't started yet.

I'm glad to hear you aren't noticing anything -other then minor. Plus, you are

the first person i hear , that was approved for 4 weeks- like me.I'm probably thinking too far

ahead; but anything you can say about "getting a refill"[if necessary!] would be music-to-my-ears!

Is there anything you might be able to tell me about what they said to do,

after 4 weeks? I ~AM~ faithful and believe it will all be O.K. Just pre-jitters on

my part-yet, Way-Happy for You!!! So-Far-So-Good!

~ Is~ a Happy Thanksgiving! God Bless You!

Cheers Eunice ["Worried So"]

-- Edited by WorriedSo on Wednesday 26th of November 2014 07:34:57 PM

-- Edited by WorriedSo on Wednesday 26th of November 2014 07:36:26 PM

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