Author Topic: Starting Harvoni (Read 13161 times)

garyc · « **on:** June 16, 2015, 05:20:08 pm »

61 yrs old
VL 10.5 million
Cirrhosis Stage 4
Genotype 1a
2010 Txt with 48 wks of Interferon/Rib-NonResponder

Thank God I finally start Harvoni tomorrow. I am so thankful because I really had to fight for this - 2 insurance companies denied me and I finALLY WENT ON STATE INsurance (Medicaid) because paying over $1,000 a month for private insurance became impossible. I was originally denied by Oregon medicaid but I rec'd a letter from Oregon Health Plan (OHP)following last denial saying they had switched me to what is called Open OHP which means I will have a disease manager for special needs. The next day I rec'd approval and tomorrow I start 12 wks of Harvoni plus Ribaviran. I am very grateful but apprehensive because the Harvoni web site says a person with genotype 1a with cirrhosis and prior txt should be prescribed 24 wks of Harvoni. When I asked my Gastroenterologist's nurse (just this morning) she said she never heard of anyone receiving an extension for Harvoni and she has NEVER heard of anyone on 24 wks of Harvoni. I find that hard to believe as the dosage and administration guidelines from Gilead call for 24 wks for geno 1a, with cirrhosis and prior txt. Anyone know anything about this? Has anyone been 1a, cirrhosis 4 and have prior txt and been prescribed only 12 wks of Harvoni. Can anyone give me some feedback? I am worried 12 wks is not enough. Thanks garyc

KimInTheForest · « **Reply #1 on:** June 16, 2015, 06:32:01 pm »

Hi Gary. Welcome to the forums and congrats on starting treatment!

Re: your question about correct duration, we certainly have other people on these forums who fit your profile and who have had (or are currently on) 24-weeks of Harvoni+Riba, for precisely the reasons you mention - 1a, cirrhosis, prior unsuccessful tx. We have also had people of your profile on 24 weeks of Harvoni without Riba, I think. So contrary to what your nurse told you, it is not unusual in the situation you describe (although perhaps it is unusual in Oregon, I don't know).

I would say start it now since you have it and then do everything in your power to get it extended to 24 weeks. This may involve you producing the Gilead guidelines, studies, recommendations, etc., that advise 24 weeks, since your Dr and insurance company do not seem to be familiar with that.

best of luck to you, gary. and welcome to the journey!

kim

garyc · « **Reply #2 on:** June 16, 2015, 10:58:42 pm »

61 yrs. old
VL - 10.5 million
Stage 4 cirrhosis
2010 - 48 wks. of txt with interferon and ribaviran- VL went from 6 million to 2,000 but never made it to 0. Over months climbed steadily upwards.

Thank you for your reply. I am going to call my gastroenterologist tomorrow. He is so busy I know I won't get to speak with him but I will again try to tell the nurse that the dosage and admin from gilead (for genotype 1a, cirrhosis, and prior txt) is 24 wks. If I can't get any response from that office I will try the pharmacy (who did a lot to get me approved by ins.) and lastly I will try and get Gilead involved. It took a great deal of effort to get approved for this and I don't want to have what may be my only chance at a cure, be sabotoged by being prescribed the wrong length of time. I am interested to hear if anyone with the same profile has been on 12 wks of Harvoni and had success.

KimInTheForest · « **Reply #3 on:** June 17, 2015, 01:07:58 am »

Good luck, Gary! You could offer to fax them this Fact sheet which advises 24 weeks of Harvoni in your situation: http://hcvadvocate.org/hepatitis/factsheets_pdf/GT1_Harvoni.pdf

I don't think it mentions Ribavirin. But I am sure there are other documents that do. And I know one of the forum moderators (Lynn) has your profile and just completed 24 of Harvoni, with Ribavirin added for the last 15 weeks because she and her Dr wanted to make sure she got cured this time.

kim

Ledoc01 · « **Reply #4 on:** June 17, 2015, 12:03:56 pm »

Gary;

1st off congrats on clearing the insurance hurdle. As for the (to me) incredibly ignorant comment from the nurse about all the things she's never heard of....if it was me, I'd try to get those comments in writing.

gl bro

Corey · « **Reply #5 on:** June 17, 2015, 12:22:18 pm »

Congratulations and good luck with the Harvoni.

I am pretty close to the same profile: Genotype 1a, Stage 3/4, initial VL >6.5 million, previously treated unsuccessfully with peg-int, riba and Incivek.

I was initially approved for 12 weeks of Harvoni by my insurance. When I questioned both the Dr. and specialty pharmacy, they told me not to worry and they went back to the insurance company at week 10 for the extension which was approved with no problem. My pharmacy has been great, they also got me a copay card from Gilead which took care of my high deductible and all my copays. They were also prepared that if the ins didn't come through to apply to Gilead to cover the extra 12-weeks of treatment.

So make friends with your pharmacist, the nurses in your Drs. practice and the Gilead Support path. Be persistent and prepared with information!

I am on week 15. My viral load results at week 6 were "present" but BDL and week 14 results were UNDETECTED (WhooHoo!!). Hope that you get similar results!!

Drink water and conquer!

garyc · « **Reply #6 on:** June 17, 2015, 12:39:31 pm »

Thanks for the reply. I am in touch with the specialty pharmacy (they have been great), the drs. office (not so great - I am met with an attitude of "we are very busy and you are bothering us) and Gilead. I have read that Harvoni plus Ribaviran for 12 wks is suppose to have the same results as Harvoni at 24 wks but this is too important to me and I want the very best chance at a cure and I think that is at 24 wks. Youw gave good feedback and I am really happy with your success. thank you

Corey · « **Reply #7 on:** June 17, 2015, 01:01:05 pm »

A couple of other notes: My Drs. gastroenterology practiced shipped me off to a virology treatment center. I was initially miffed, but now realize that this is all they do. The "service" has actually been better. I have a direct line to the Dr. She calls me back. They know me there and if I call with a concern they take it seriously (this probably saved my life when I had an adverse rx to Incivek). My dr at the VTC said that she has written over 200 scripts for Harvoni and there is another Dr at the center. The VTC is assoc with the hospital. Not sure if that is an option for you.

I was contacted by a large mail order pharmacy with the message that my insurance required me to use them. However, my state regulations preclude that so I knew better and stuck with the local guys who have been tremendous advocates on my behalf. My insurance company has no such policy.

I have read a few posts by genotype 1as that have been on 8 and 12 wks of treatment that they are relapsing. Not sure of the statistics in this regard but I am with you. This is a great chance for a cure, some insurers are making it a one shot deal so best to go for the 24 wks.

Good Luck

garyc · « **Reply #8 on:** June 17, 2015, 08:42:20 pm »

Thanks for the support - this forum is amazing; the care and concern shown is inspiring. I am so grateful that I got approved. Even with my dosage problems (12 wks instead of 24 wks) I still feel so blessed. I guess I always knew I would finally get an approval. I knew my profile matched exactly what the ins. companies were requiring for approval. So my first day on Harvoni and Riba. went almost without incident. Took Harvoni first thing in morning (6 am) and at noon I ate and took 3 Riba. About 2 hours after taking the Riba. I got severe heartburn and noticed I also had quite a bit of cognitive impairment going on. I was doing some accounting work and what is normally a "snap" for me took serious focus and I kept having to redirect my thoughts back to what I was doing.
Blessings to all garyc

KimInTheForest · « **Reply #9 on:** June 17, 2015, 09:40:14 pm »

Hi Gary. We've got someone (@Trenz) over on our "Day 2-Harvoni+Riba" thread who has been approved for 24 weeks of Harvoni+Riba because of a profile similar to yours. A bean-counter at his insurance company tried to reduce his duration to 16 weeks against his doctor's recommendation, but he fought it and kept the full 24.

http://forums.hepmag.com/index.php?topic=2700.msg23205#msg23205

best,
kim

Scorpio58 · « **Reply #10 on:** June 17, 2015, 10:22:19 pm »

I started on harvoni 3 nights ago. So far all is exceptional.i don't even know that I am taking it.this is a true blessing. I had done
Treatment 12 years ago and the side affects nearly killed me. Tx failed.hopefully tx will be successful this time around.

KimInTheForest · « **Reply #11 on:** June 17, 2015, 10:49:56 pm »

Congrats on starting the Harvoni journey, Scorpio58. And good luck!

kim

garyc · « **Reply #12 on:** June 28, 2015, 06:50:29 pm »

Just wanted to update everyone on my Harvoni journey. So I contacted my Gastroenterologist and the pharmacy that helped get me on Harvoni and Ribavirin. Although my HCV profile calls for 24 wks of treatment Oregon will not authorize it only 12 wks of Harvoni and Ribavirin and if at 10 wks I still have detected virus in lab work they allow a request for 4 wk ext which would be 16 wks of treatment. But Dr and pharmacy said they have never heard of anyone receiving an ext. But anyway I believe I am going to be cured at 12 wks and have no relapse. Thank God! I took first pill on June 17th and have had very few side effects - more about them later but the amazing thing is I l ready feel 100 % better and everyone notices it. I have 100% more energy, brain fog is lifting (still some way to go but getting better), no pains and just all around feeling great. Now side effects - first day I had about 1 hr of severe acid reflux which I didn't do anything about and it passed. Then about 3rd day I had 24 hrs of shortness of breath and since then then only side effect is 2 unusual bumps filled with puss on my arm. I broke one open with a sterile pin and then put hydrogen peroxide on it and wash my arm with hibacleanse several times a day. For a little bump loads of puss came out when I broke it open with the pin. Sorry for being so gross but it is the only way to describe. Other than that everything is great and that is nothing. I pray everyone else's treatment is going well and we all get SVR and no relapse whatever length of treatment we have. I'd like to know if anyone else felt this good after a week and also I'd like to hear about your side effects and if anyone had strange puss filled bumps. God bless everyone garyc

genotype 1a
cirrhosis stage 4
treatment experienced
2010 Interferon and Riba. Failure
VL April 2015 10.5 million
Started Harvoni + Ribavirin for 12 weeks on June 17, 2015

KimInTheForest · « **Reply #13 on:** June 28, 2015, 07:06:54 pm »

Great to hear your news, Gary! I think it is a really good thing that you got Ribavirin added to your Harvoni for 12 weeks, given your F4 (cirrhosis) status. And I agree with you that 12 weeks of Harvoni+Riba will likely do the job for you.

I never had bumps like what you describe, but I did feel much improvement in energy and mental clarity by Day 5. And in retrospect, I am not at all surprised. These new drugs work very fast! I started with a viral load of 4 million. By Day 7, it had fallen to just 130. (At 4 weeks I became undetected.) So in other words, the reason I started feeling better and clearer than I had in years by just Day 5 is because there was hardly any virus left in my body at that point. Amazing how fast this stuff works!

Several of us who are currently on 12 weeks of Harvoni+Riba are chatting away on this thread over here and posting our results: http://forums.hepmag.com/index.php?topic=2700

Wishing you success,
kim

garyc · « **Reply #14 on:** June 28, 2015, 07:24:19 pm »

Thanks for the encouragement that is what the telling of your harvoni journey is to me encouragement. I will go over to the thread you listed and share there also. god bless and may you continue to thrive physically. Wow 130 after 7 days. I am in awe. Blessings garyc

male 61 years of age
genotype 1a
cirrhosis stage 4
treatment failure
2010 interferon and ribavirin for 48 wks resulted in failure
vl as of April 2015 10.5 million
June 17 began 12 weeks of treatment with harvoni + ribavirin

KAL · « **Reply #15 on:** June 28, 2015, 07:40:35 pm »

hey Gary , i too had bumps on my forearms in the 2nd week , small, about 1/8 to 1/4 inch but not puss , more like clear fluid , i cleaned them up & there gone now .........starting the 2nd week i noticed a much improvement in ability to focus with a clear head and continue to improve (im at week 8 )..............the only side im having rite now(riba induced) is sensitive skin.......if you have sensitive skin , limit your exposure to the sun as much as possible and when you do go out , use sun block.

all the best ,,,fight the good fight !.........K

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Author Topic: Starting Harvoni (Read 13161 times)