Wife of hep C patient. Help please.

[Hmmmm13]

My husband was diagnosed with HCV about 5 years ago. He has been through 3 treatments and all have failed. He is battling all of the symptoms that you guys talk about on here; brainfog, depression, itching and a lot more. What can I do to make his life easier and more comfortable? Is there a diet you recommend? THANK YOU for helping us.

[gnatcatcher]

Dear Hmmm13,

Hard as it is for your husband, it's also very, very hard for you to watch. There are others here much more informed about your specific questions, but I want to assure you that a person can fail three treatments and succeed at #4. For example, here's a thread on one new treatment that is having great results for people who failed prior treatments: http://forums.hepmag.com/index.php?topic=4121.0
Of course, consult your husband's liver specialist on the best option for your husband given his genotype, F score, MELD score, and specific prior treatments. A second opinion from a hepatologist at a major center that participates in clinical trials could be well worth the effort.

May the fourth time be the charm!

Gnatty

[Lynn K]

Hi what treatments did he fail?

Was it with the old medicines with interferon? Or was it with the approved since 2014 medicines like Harvoni, Sovaldi or Viekira Pak? What kind of doctor has he seen and what does his doctor say?

Do you know the status of his liver do you know his fibrosis number something like F1, F2, F3 or F4. Had he had a liver biopsy or a Fibroscan test or fibroscore blood test? Those tests would provide his fibrosis score.

Does he have liver cirrhosis?

The more you are willing to share the better we can help answer your questions.

Best to you both
Lynn

[gnatcatcher]

Hmmmm, I'm glad Lynn K. chimed in. If you look at her signature file, you'll see that for her, the FIFTH time she underwent treatment was the charm!

[Lynn K]

Yup

Happy New Year Gnatty

[Mugwump]

My husband was diagnosed with HCV about 5 years ago. He has been through 3 treatments and all have failed. He is battling all of the symptoms that you guys talk about on here; brainfog, depression, itching and a lot more. What can I do to make his life easier and more comfortable? Is there a diet you recommend? THANK YOU for helping us.

Until his liver settles down I highly recommend reducing the level of cheeses, red meats and other proteins. Especially reduce the fats and salts. This does not mean that the diet has to be boring or bland. Contrary to popular belief these are the things which cause the most dietary upset and digestion issues. Yes reduce super spicy food but this does not include reducing fundamental seasonings like basil, rosemary or turmeric.

Again reducing refined carbohydrates in the diet is not a bad thing but this goes for all of us here in the west who over use bread products and the like.

My person favourites are to seasoned roast potatoes with the skins, the same thing goes for vegetables.

The general rule is no more than 6 oz of meat protein per day, no more of the 12 or 16 oz sizzling greasy steak routine!
Try your best to balance things out, for instance: If you have eggs for breakfast or lunch then try to have a meal with less protein later in the day.

Cooking for seniors is my job and with liver damage I too had to change my eating habits and found that going easy on proteins and making sure that my diet was always varied has served me best over the years as I progressed to F4 cirrhosis.

All the best getting cured and finding a new lease on life!

Cheers and Happy New Year
Eric

[gnatcatcher]

Hmmmm, I'm glad Eric (Mugwump) has now provided sound dietary advice. It should mesh well with what your husband's cardiologist advises.

Eric was very sick, with a very low quality of life, before he got cured. Since then, he has been able to do many things he thought he'd never be able to do again. (Eric, care to summarize your "before and after"?) Between Eric's dramatic recovery and Lynn's persistence in getting that fifth, SUCCESSFUL treatment after four failures, this is why we're also emphasizing not losing hope about getting cured. Your husband's depression is very understandable, and it also drags you down, but there's nothing like a cure to go from depressed to elated.

Even if your husband's current hepatologist is one of the best, it doesn't hurt to have his treatment history, lab results, etc. evaluated by a fresh set of eyes. Hepatologists are frantically busy these days and can miss an important clue that could lead to the wisest choice for your husband's next treatment.

Yes, may 2017 be a very happy year for you, your husband, Lynn, Grandpa Eric, and everyone else in Heplandia!

Gnatty

[andrew j]

Lucinda (Porter) posted a story yesterday in the 'Blogs' section on 'fatigue'.
There is a link there to dietary recommendations, if you need more info ...

Eric - can I ask you something?
I seem to consume A LOT of salt (raw sea salt - if it makes a difference?).
This can indicate thyroid problems, can't it?

With the best will in the world, I seem to unable to reduce consumption.
... I mean, I've reduced it a bit - but really, not by much.

[elias]

For example, here's a thread on one new treatment that is having great results for people who failed prior treatments: http://forums.hepmag.com/index.php?topic=4121.0

There are actually THREE new regimens in the pipeline for re-treatment in cases of DAA failure. Two have formally applied for FDA approval. Expected this year. Results of Phase III trials were very impressive.

The two are: Sof/Vel/Vox   referenced earlier

And G/P by Abbvie

Theres yet a third one coming up  as well...

Vital question is: How likely is insurance to cover such re-treatments?

[Lynn K]

I guess as far as retreatment that is likely insurance coverage dependent. I had that fear when I relapsed after 12 weeks of sovaldi and olysio that they would not allow another treatment.

While initially I was denied that was based on them thinking I had not responded to sovaldi when actually I had responded. I was not detected at EOT so I did respond to treatment. So anyway once that was cleared up I was approved for 24 weeks of Harvoni.

Certainly that is a scary proposition fighting to get treatment and then having to fight all over again to be treated after a treatment failure. But several here have had treatment failures and went onto retreat and finally be cured. I don't recall hearing about anyone who failed treatment being denied by insurance. Although those with no liver damage have been advised to wait for better treatment options especially if they are found to have resistance factors. But that would be a medical decision to wait vs insurance denial.

[elias]

. But several here have had treatment failures and went onto retreat and finally be cured. I don't recall hearing about anyone who failed treatment being denied by insurance.

Thats good news, Lynn.

I dont recall those posts here.  Were they were denied at first, and then prevailed upon appeal?

Although those with no liver damage have been advised to wait for better treatment options especially if they are found to have resistance factors. But that would be a medical decision to wait vs insurance denial.

It's heartening that two different regimens have already applied for FDA approval.  Gilead's Sof/Vel/Vox and Abbvie's G/P.

I dont know how long it usually takes from New Drug Application (NDA) to FDA approval. i think those were granted some break through status

[Lynn K]

 I don't recall anyone being denied by their insurance for retreatment.  I only recall some who were advised to wait because they have little liver damage as recommended per the AASLD treatment guidelines. Fortunately we have not seen many people who failed treatment.

Not to say there weren't any just I don't recall

[elias]

Yeah.
 At that seminar I had posted about, some felt it's worth waiting if the fibrosis level is low, because the newer salvage remedies do  not require ribavirin. Whereas the ones often now used use ribavirin in addition to longer treatment time:


http://hosted.medipix.com/aasld2016/

Essentially, they felt that pretty much all people can now be cured by DAA. In case they fail the first DAA regimen, the new ones coming down the line have >95% of SVR

[Lynn K]

 Is that 95% success for treatment naïve or 95% success for those who failed prior treatment with another DAA?

[elias]

At least 95% after having failed previous round of DAA.

I think there was a somewhat lower rater for GT3 with cirrhosis. If i understood it correctly

Glecaprevir/Pibrentasvir (G/P) by Abbvie was notably successful, both  as re-treatment and as first line treatment. Even at shorter duration tx

Even in the  rare cases where  the 2nd treatment fails as well, there is option to add ribavirin to the mix and go for another, maybe longer treatment

So the limiting factor might come down to insurance coverage. If those studies shown in that symposium hold out in real life situations

[Lynn K]

Wow that is awesome 95% cure of previous DAA failures that is amazing data!

[Hmmmm13]

Thank you all for your input! He has GT3 and had the he tips procedure. His situation is pretty bad but we'll keep pushing through. I am very optimistic about the new drugs. Something to hope for!

[Lynn K]

Ok so sorry to hear this his symptoms are not from hep c they are from advanced liver disease. Is he under the care of a hepatologist associated with a liver transplant center? Is he on the transplant list? I am assuming he had the TIPS procedure because he has ascities (swollen abdomen due to retained fluids) which cannot be controlled by diuretics.

You said previously he has brain fog has he been diagnosed with hepatic encephalopathy? Is he taking lactulose for his HE if he has it? Has he had an upper endoscopy to check for esophageal varicies.

Do you know his MELD (model for end stage liver disease) score?

[Mugwump]

Lucinda (Porter) posted a story yesterday in the 'Blogs' section on 'fatigue'.
There is a link there to dietary recommendations, if you need more info ...

Eric - can I ask you something?
I seem to consume A LOT of salt (raw sea salt - if it makes a difference?).
This can indicate thyroid problems, can't it?

With the best will in the world, I seem to unable to reduce consumption.
... I mean, I've reduced it a bit - but really, not by much.

Sea salt contains iodine naturally in various levels. Salt was only iodized after it was discovered that large numbers cases of "goiter" were happening in the population and that adding iodine to table salt was a quick way to increase the consumption of iodine and reduce the incidence of thyroid problems. So there was advertising of the health benefits of having a salt shaker on the dining room table and the table salt industry was born in the 1920's. So it became normal for everyone to reach for the salt shaker regardless of how much was in the food in the first place.

The reason why this was occurring was largely due to the "meat and potatoes" northern diets especially during winter months. The ironic part is that layers near the skins of potatoes contain the larger portion of iodine and that was the part that was mostly discarded. Also scientists discovered that native North Americans that lived near the sea were less prone to thyroid issues and that their diets included kelp and seas salts and more iodine year round. Whereas in the northern interior of the continent populations had higher percentages of thyroid problems because of dietary habits.

As with all things nutrition the overconsumption of iodine can also become a problem.

What I found is that once you get used to eating food with less added salt then the craving for salt quickly diminishes. This Christmas I was lazy and used a commercial gravy mix and found that I had to really thin it down because the amount of salt was obviously ridiculously high when I tasted it. I looked at the packaging and bingo it said that a mere 20 grams of gravy contained 80% of the daily recommended intake of salt.

As I served the diner I noticed that some people still reached for the salt shaker even though the food definitely did not need it. Old habits die hard when it comes to salt but this habit is one of the main reasons why we have an epidemic of heart and stroke problems here in the west.

Natty
About the debilitating aspects of cirrhosis;

Yes my level of bilirubin was over 20 for a very long time my skin color was starting to darken to yellow and the brain fog was getting slowly progressively worse. I know that a bout of the flu or a severe cold could have easily killed me only 3 years ago before being cured.

I was extremely lucky to have piping that did not leak too severely but my abdomen did become quite distended to the point where things became very difficult. Even getting in and out of bed I could feel the pinching of beginning herniation going on between the ribs and ab muscles. I actually got in the habit of manipulating things back in place and thinking nothing of the bulges that would send most people to see the doctor!

So when I say that my liver was a Texas sized hunk of much abused pork I am not kidding.

I would have been lucky to have seen out 2015 were it not for the miracle of DAA treatment. Anyway I am off to work, something which I thought I would never say again back a few years.

All the best
Eric

 

[Gaj]

Another promising option for GT3s with cirrhosis that is currently available but not yet a 'recommended' treatment is a combination of Zepatier and Sofosbuvir. I'm not sure how it would be considered for insurance coverage at present but would be worth exploring based on the 96-97% success rate in the C-ISLE study presented at AASLD in November.

http://www.infohep.org/Grazoprevirelbasvir-sofosbuvir-highly-effective-for-hard-to-treat-genotype-3-hepatitis-C-patients/page/3099138/

[andrew j]

(Eric - I have put up a new post in the 'Post-Treatment' section).

A.