Long post about my partner's experience with Harvoni a

[Jane_Clark1]

This will be a long post so bear with me. I wanted to offer words of support and encouragement to everyone fighting the Dragon. My partner was diagnosed with hep C genotype one  back in 1993 when he went to give blood. he's 65 now and he's probably had it since he was 17 or 18 when he had a case of jaundice that no one could figure out where it came from.

He was never a drug user, and a light social drinker, and quit drinking entirely shortly after the diagnosis. Except for the hep C, he has seemed pretty healthy but I'll talk about that in a minute.

He's been followed by the experts at UCSF since maybe 98 or so and is always had excellent treatment. His gastroenterologist kept saying a couple more years a couple more years as his liver enzymes were normal, he had no other complications, and it seemed that the treatments available with interferon and ribavarin were toxic to a lot of people. We kept hoping there would be something along the way that was more targeted to Hep C and less toxic on his system.

Fast forward to last October. He went in for his annual checkup, with his PCP, who just happened to mention hey there's this doctor we just got some training from, you might want to go talk to him. This was not a UCSF medical person, but an independent practitioner who specializes in HIV and hep C treatment. As it turned out, Harvoni was scheduled to be approved near my partner's birthday so this doc ran a gamut of tests including the FibroSure. Fibro sure came back between level III and IV when all the prior biopsies and blood tests and ultrasound had indicated no more than stage II.  in retrospect we think the doc ordered this test because he knew that's what would happen, and that would be the magic number for having Harvoni approved.
My partner began treatment with Harvoni a week before Thanksgiving. He's still working, so we had to plan it around the maximum time off that he would have, because we knew side effects would certainly affect his ability to concentrate etc. Now that the treatment is over, we've talked about both the disease and the side effects of this treatment a number of times.

Being several weeks post treatment, I think we both say not only has his health improved, no more digestive issues like he occasionally had, all the weird rashes he'd had for years and years cleared up, no brain fog whatsoever, doesn't need to take a nap every early evening and Saturday afternoons, and what I would say was a low level of every day depression has by and large lifted. So I want to encourage all of you who are undergoing treatment, whether it's of all the whether it's Harvoni, or Viera pack -  whatever treatment you may be on if you can eradicate this virus from your system I can safely predict you will feel better. I am amazed at the difference in my partner's demeanor, his attitude about life, his ability to enjoy life, his appetite – things I took for granted were basically okay as would he as well. We've had a good life, a  decent life and I certainly would not have guessed that a lot of these minor symptoms had to do with the hep C.

That said the 12 weeks of treatment were pretty rough. Every day headaches, which he successfully addressed with a "hippie dippy" salve that we bought at a health food store that contained willow bark and arnica.It's available at a store called body time, which has several outlets in the San Francisco Bay Area, and is also available online.
http://www.bodytime.com/men-s-muscle-joint-gel.html
this says men's anti-inflammatory gel on the website but not on the jar and it wasn't there in the store so I use it too. It was his magic bullet – before bed time, he’d rub some on his temples; wake up in the morning rub some on his temples and the headaches would go away. But they were constant for the first I would say four weeks of treatment. He also got very tired at the end of the day and was generally in bed by 9 o'clock. But he worked at his part time job throughout treatment and didn't miss any days due to brain fog or anything else.

He did have a lot of anxiety early on and then toward the very end of treatment and it's hard to say if that was a side effect or just the anxiety of wanting it to work. He also wound up breaking out in pus filled pimples (sorry for the gross image) throughout the treatment, despite washing and showering and bathing every day and using some antiseptic wash and creams. It seemed like the disease was just working its way out of his system, but for a couple weeks there it was pretty gross.

If anyone in the bay area is looking for a practitioner who will be on your side and support you throughout this process, I would be happy to give recommendations via PM. Both his treatment team at UCSF and the doctor who turned us on to Harvoni in the first place has been awesome, especially the UCSF team who is able to successfully advocate for Harvoni covered by Medicare's plan D and the bulk of the co-pay paid by the patient network. Without this help, we never would have been able to afford this treatment (duh) . I have a little resentment initially about UCSF not advising us about the new treatments that were coming along, but I do realize it was partly a function of timing. My partner just happened to get his physical right before Harvoni was approved, and wasn't scheduled to see his Gastro until the first of the year. So I'm sure at that time he would've discussed it. All of the treatment teams both our individual PCPs and the UCSF Gastro team have been awesome and incredible and wonderful.

At week 3 1 my /2 partner was detected but at levels too low to say what they were  - like less than 12. At week eight and week 12 he was undetected. We now anxiously await 12 the blood test for 12 weeks posttreatment, and I say that in all seriousness. It's a waiting game after so many years and these last few weeks I think are going to be a bit difficult.

I write at this length to let you know the matter how long you've had the virus, the matter what the obstacles, it's worth getting some help to advocate for yourself to get on one of these new treatments. We were lucky enough to have UCSF run a very seamless process – they have an entire pharmacy team that advocates for you to make sure that you're going to get the drugs approved if possible. It's been a roller coaster number of years, and I'm glad we are nearing hopefully the end of the treatment for this disease.This forum has been invaluable as a source of support, information, and just knowing that there was a resource to go to when I had questions or concerns has been a great great help during this whole process.

I hope all of you have someone who loves and cares about you, and will wrestle with the insurance companies, the paperwork, the appointments, the frustration, and see you through to that you can successfully beat this disease.

[Mike]

Hi Jane,

Thanks for the inspirational report.

I hope your partner slays this dragon for good.

I think it goes without saying, but we're all pulling for both you and your partner. And you can rest assured knowing that an internet army of people will be cheering the day you report an SVR12 (i.e., the dragon is dead)!!!!

Best wishes, Mike

[BubbaT]

Yes Jane,

thank you for telling your story,

Now, tell me about the hippie dipped sauce!   Lol
I used to be a hippie I think, I forgot!     

[Jane_Clark1]

Hi Bubba

The link to the  salve is in my post. Thanks for responding!

[Red Hen]

Jane, I appreciate your positive and upbeat story. Hope your husband continues in good health!