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Hep C Discussion Forum -> General Discussion -> Would like to hear feedback on drugs other than Harvoni
Post Info TOPIC: Would like to hear feedback on drugs other than Harvoni
Tig


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Hi Sherri,

Good to hear from you. I'm a Vet and am also seen on occasion by the VA. They provided a lot of my testing when I was going through treatment and I liked having access to their patient portal. It's very convenient having all of that data in a safe and relatively secure location, the NSA not included. 

Your ultrasound does sound good, but you're correct, the basic abdominal ultrasound isn't an accurate measure of fibrosis. The Fibroscan, is a specialized ultrasound that measures liver stiffness only, where standard ultrasound is capable of assessing the anatomical and structural integrity of the liver, gall bladder, spleen, portal vein, etc. Fibroscan and TE can't assess that. Standard ultrasound is also done every six months on average in patients with cirrhosis to monitor for HCC and structural changes. They can also visualize fluid build up (ascites) in the abdomen as well.  MRI is being used more often as well. (Of course you're aware of the percutaneous biopsy, which is still used quite often.)

They may also perform a blood test called Fibrosure or Fibrotest, which evaluates 6 different blood markers using an algorithm. We're seeing it used more often but isn't the most accurate test available in my opinion. But it's cheap and that seems to be the way too many providers are going. It can either be inaccurate at the high or low end of the scale, so an individual can either be abnormally high and be approved for treatment or abnormally low and denied. So it's one of those hit or miss possibilities. There's a lot of information available online.

Stay in touch and if we can offer any advice or you have any information for us, please share it with us. Nothing is boring, we enjoy the opportunity to hear what everyone has to say!

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Sherri


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First off, thank you for all of your responses. Even when I disagree, I appreciate any new input or personal experiences that are shared. I have continued my research on various ways to sustain my health and have a very good outlook with what I've found, as well as reinforcement of what I had already learned and have been practicing. Knowledge is truly power.

My appointment with the VA GI doc is next week. I am able to view all test results online and am very hopeful after reviewing the ultrasound results summary. Basically, it said that my liver is normal in size, homogeneous in texture without focal mass, and no evidence of cholelithiasis or biliary dilatation. The main portal vein is patent with hepatopetal portal venous flow and no evidence of ascites in the upper abdomen.

I'm assuming they will need to do further testing for more specifics on liver fibrosis stage, but not sure. I don't think the ultrasound gives them that info, right? I'm just so relieved that I probably don't have cirrhosis or anything that advanced.

The more I learn, the more I have to respect the human body. So much is related to individual genes, like cytokines even have polymorphisms that they are researching. Each cytokine can have different genotypes, which means each respond to treatment and other variables differently. Reducing or increasing certain cytokine levels can improve/decrease chance of SVR, and length of SVR.

Sorry if this stuff is boring to anyone. I probably should have been a microbiologist or something because it fascinates me. It also scares me the more I learn.

 

 

 

 

 

 



-- Edited by Sherri on Wednesday 18th of May 2016 09:06:49 PM

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tomyboy


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My husband had no trouble with harvoni either and in my opinion. It saved his life. That was his sixth time at treatment and something finally worked for him and stuck.  His hospital in NYC is calling it the miracle drug as they have gotten such positive results.  I am sorry to hear that so many are experiencing side effects.  This treatment was the one for him which carried the "least" amount of side effects and beat the beast for him as well.  Best of luck. 



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

singsong


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Hi Sherry, I view Harvoni or other recent drugs in a risk/benefits way.  We have proof of what harm HCV can do.  We have  proof that Harvoni (and other new meds) kills the virus.  That's enough for me.  I hope you choose treatment with something you are comfortable with soon.  Anna



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Age 66. 1988? Dx 1996. G1a.  Biopsies 1996/1998.  Mild inflam. Tx naive.12/2015-Fibro F3/10.5 kPa. VL 1.1m Harvoni 8 wks. 5/9 VL was 69.  EOT 6-13-16. ALT/AST 13/16. Platelets 325. UND.  9/4/16 EOT+12 UND & 1-10-17 EOT+30 UND!
Shadowfax


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Hi Sherri ,

I just finished a 12 week tx with Harvoni yesterday. It was very tolerable. Yes you are correct that long term effects cannot be established now but truth be told, they cannot for most drugs.

Just a week ago it was told by my doctor that the shot they are been giving people to protect them from Pneumonia for years and years is not effect at all. What the bad parts are has not yet been made public. There is a new drug on the market now, PASS

I love sharing this quote with all my friends.... Remember that every drug that the FDA takes off the market was approved by the FDA. Sometimes we just need to take the risk because the alternative is not good.

Take care and I hope you feel comfortable with something because if it has not been around for a very long time, nobody really knows.

Cheers.

 

SF

 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
wendyo


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hi Sherri,

I too am a 1a. Failed previous tx with interferon alone and interferon + riba. Harvoni did it for me and it was not bad as far as side effects. Yes it is too new to know long term effects but my liver doc told me 24 years ago, as long as you stay clean/sober you will die from something else, not HCV. And I believe that with all my heart and soul. HCV is a progressive disease so my hope for you is that you get treated. 

wendy

 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Sydhanrahan


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Hi Sheree,

i ignored my Hep C status for as long as I could, partly because I was frightened of Interferon, but also because I felt well and hoped it would just chuggle away in the background as it had for most of my life.

Now I am a decompensated cirrhotic. I wish these treatments had been around when I was your age. Perhaps Harvoni will have long term side effects - although it certainly seems to be well tolerated by most people who are currently taking it as well as highly effective at getting ridding of the virus.

No one categorically tell you that there will be no side effects in the long term. However without eradicating the virus from your system, your chances of developing severe liver problems are very high. Hep C doesn't just destroy your liver - it seems to have an adverse effect on most other organs and metabolic functions too. 

To me, your dilemma is a no brainer. 

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
skewedButNotBroken


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I treated with Sovaldi/Olysio and felt like I was taking a mild hit of LSD. I also had numerous heart flutters which caused me to take Valiums and I subsequently became addicted to them and once I tried to come off of them (the Valiums) I couldn't and like an idiot I started drinking and was involved in a car accident and nearly died.

Now, I'm clean and sober and my heart has stopped fluttering. I feel much better now, but it took nearly 2 years to get over all of the side effects



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Tig


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Hi Sherri,

I don't have any personal knowledge on BHT, other than the info I can search online. I have read that studies on the possible anti viral action it may possess exist, but there isn't much supporting documentation either. It is a banned substance in several countries and that's an obvious concern. It has some components that aren't something I would care to ingest. Phenols and Toluene are used in gas, paint thinners, solvents, etc and are flammable. I don't think I would want to take something like that in doses high enough to obtain said anti viral effects. All of those chemicals are harmful and I don't believe exposing a healthy liver, let alone a sick one is a good idea. Just my opinion, but the studies on it's use as an anti viral are difficult to find. Far less than the DAA's already approved to treat HCV.

One consideration you need to make is understanding that delaying approved treatments that do work, for experimental antioxidant therapies and unproven protocols have often lead to increased and irreversible damage due to delays in treatment. The longer a person waits to stop disease progression, the risk of both hepatic and extra hepatic damage increases, which can result in some of these long term problems you are reading about. The incidence of problems (imo) doesn't outweigh the benefits of stopping this disease at your earliest opportunity.

The treatments are far easier than ever before, shorter in duration and way more successful. Sometimes life is a gamble, but HCV left untreated will always be a losing hand. I will do some research on the doctor and see what is available. I would like to follow your opinions on the doctor if you seek his care. Please keep me in the loop. I value hearing about all treatments, including professionally supported alternatives. Just beware of false promises...



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Sherri


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Thanks, Tig56. I will look into the Sov/Velpa combo. Just really afraid of Harvoni right now. The woman I met who did the antioxidant therapy was on it for a few years. It improved her quality of life, kept her viral load low, kept her liver healthy. I feel badly for her that she put in all that effort and now after Harvoni is miserable. There are a few other doctors who use Dr. Berkson's protocol. He has published some studies on it in scholarly journals and is reputable. I would trust his opinion and might actually go to see him for consultation about pharmaceutical treatment.

 

Also, have you heard anything about taking BHT? It's normally used as a food preservative but I've seen discussions on clearing HCV with it. It's an antioxidant and supposedly takes about 6 months to a year, though.



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Female  Age 54   Genotype 1a   Treatment Naïve   

Probably contracted around 1980. Found out in 2001.
Sherri


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I missed your comment, wmlj1960. That's great! I wish I only knew of the good stories. Sometimes I overthink and obsess when making important decisions. Right now, my health seems to be fairly good, so I've told myself that I can wait. If my ultrasound results show liver damage, I may change my tune. Recently, my blood pressure went up a little, for about 3 months. I worried that it had to do with the virus. I started taking Reishi extract and now the pressure has gone back down. I do admit that I'm tired of putting so much effort into research and staying healthy. And, it's so private that I can't talk about it to just anyone. Poor husband is a good sport about it. Would be nice to be "normal" again.



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Female  Age 54   Genotype 1a   Treatment Naïve   

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Tig


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One other pangenotypic protocol that is really taking off is from Gilead. It has shown excellent rates of success and we have members that have done well on this two or three drug combination. It's comprised of Sovaldi, Velpatasvir and is now being combined with GS 9857, still in trials, but is being fast tracked. Very effective. 

Sov/Velpa 

 

I don't know anything about the antioxidant therapy in NM, but at best it is a short term intervention. It will not defeat the virus. There are benefits to antioxidant therapy, but I would want to eradicate the virus first and then work on the fibrosis regression. The risk for liver disease progression is high with this disease, so the sooner you can stop it the better. Good luck and if you have some information on the antioxidant therapy, please share it.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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Hi Sherri,

My opinion of Olysio is that it's outdated now. It was an effective NS3 oral agent and started out in the Interferon days. Like some of the older NS3/4 agents, it came with it's own set of unpleasant side effects. The new DAA's are better in every respect. The VA offers the newest DAA's and will no doubt expand them in the near future.

If you use our search function above, enter the word Simeprevir and you'll find several discussions we have had here on the forum. You will see that most posts are dated. That's because it's not used much anymore. You can also see some of the last updates made by the FDA by reading this HCV Advocate article.

Olysio Update



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Sherri


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Yes, it does seem to be very individualized. I am not as afraid of the side effects during treatment as I am of the longer term problems that so many people are having months after end of treatment. The same complaints keep surfacing, leg neuropathy, pain in feet and hands, numbness, etc. I really don't trust the pharmaceutical companies nor the FDA to be completely transparent. I know that there is the chance that I would not suffer those effects, but it's not worth the gamble right now. I connected with a woman who was being treated by Dr. Berkson in Las Cruces. I had read so much about his triple antioxidant therapy but wasn't entirely sold without talking to a real patient. She told me that he had advised her to wait for more real world reports on the new drugs but she chose to go ahead with Harvoni. Now she's in a lot of pain. While on Dr. Berkson's therapy, she actually reversed her fibrosis. I have read clinical studies from other countries that have also reported that fibrosis can be reversed. Anyway, if I decide to forego the drug treatment, I will probably make a trip to Las Cruces to just focus on staying healthy for a while longer. One other problem, though, is my age. After menopause, liver fibrosis progresses faster, in healthy women, too. I haven't gone through that, yet, but it's just around the corner, biological clock ticking.

I hope you and your wife are clear of this thing soon. How much longer is treatment?



-- Edited by Sherri on Monday 2nd of May 2016 06:12:44 PM

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JimmyK


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You are more than welcome and I am glad you found the link useful.

I honestly have come to believe that side affects are pretty much user specific. As an example only, many here have treated with the V-PAC / RBV combo and have done quite well. Me, well not so good. I am now on Harvoni and asking me to compare the two the former is a monster and the latter a kitten.

It is hard to compare between treatments where the new DAA's are concerned when you are a 1a or 1b.

As a 1a that which you are looking at will include RBV if you go wit the V-PAC. A 1b could go without the RBV but not the 1a.

One of the things I look at are Drug interactions. V-PAC does have a wider range of interactions than Harvoni not to mention the need in your case for RBV. If you are concerned with neural side effects of Harvoni I really don't think anything with RBV would be acceptable to you.

My wife and I are both currently on Harvoni and again it is an individual that may respond differently that the guy next to them but we have no issues.

 

Regards

 

JimmyK

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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wmlj1960


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 I treated my geno 1a with Sovaldi / Ribavirin. That's the only treatment other than Harvoni that I've had and although there is more long term Sx info available for it because it's been around longer, I wouldn't suggest trying it rather than Harvoni for geno 1a. I had no problem with Harvoni but that's just me. It did cure me and I feel better than I have in many years but I could probably find something to complain about, but then I can find something to complain about with cold, clean, fresh mountain spring water if I try hard enough. Just my experience...



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Sherri


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Thank you, JimmyK. I haven't seen that. I did a quick gander at the criteria pages and did see the combo simeprevir/sofosbuvir. It looks like the VA does treat with all of the approved drugs for type 1. Great resource for VA patients. Now that I know this, I just hope to hear some anecdotal info from people who have had experience with some of the treatments other than Harvoni. Thanks, again!



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Female  Age 54   Genotype 1a   Treatment Naïve   

Probably contracted around 1980. Found out in 2001.
JimmyK


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Hello Sherri.

Likely you have seen this but just in case. Lot's of information.

 

http://www.hepatitis.va.gov/patient/index.asp

 

All the best

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Sherri


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I am scheduled to see a hepatologist at the VA later this month, so would like to be well informed before the appointment. I have read many, many reports of the neural side effects of Harvoni (on other sites besides this one). I have decided against going that route, especially after learning that it was fast tracked for approval by the FDA. I would like to hear from people who have tried other treatments, with either successful or unsuccessful results. I have genotype 1a, so am looking into Daklinza, Zapatier, Viekira Pack. I also would like to know if they still treat with he simeprevir/sofosbuvir combination, as I did not see it listed on the new guidelines. I was told by an Emory researcher that he didn't understand the sudden shift from that to Harvoni.

I have recently been deep into research on medicinal mushrooms and am hopeful that I can at least lower my viral load and improve my liver health. I have taken Silymarin for years, along with high potency Vitamin C powder, Alpha Lipoic Acid (intermittently), Omega 3's, B-100 Complex. The last 3 lab results (taken prior to starting on mushrooms) show low platelets and low WBC. My ALT had risen a bit to 110. My viral load is 404,000 IU/mL, up from 330,000 a few months prior.  All other test results are in normal ranges. I had an ultrasound last week but will not know the results until my appointment.  I must note that I had regressed on my diet due to slipping into depression, but got back on track about a month ago. The symptoms I notice are fatigue, depression, insomnia, and vitiligo (which is only a correlation at this time). I hike and work out regularly, only noticing some slight muscle fatigue that may or may not be age related (I'm 54). Oh, I also drink fresh juices often, like, beet, apple, cucumber, ginger, wheatgrass. Beet juice seems to give me a boost. I've also been stimulating my lymphatic system via sauna about 3X weekly.

Probably too much chatter and info, but I tend to go on. Thanks in advance for any feedback on treatments I mentioned above.



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Probably contracted around 1980. Found out in 2001.
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