Hello, New to HepC Forum

[bg1954]

Hello all, Glad to have found your forum. Just found out my hep-c test was positive. I go for my FibroScan next Tues. The Doc is ok with me buying meds from India and after some research I would like to buy from Greg Jeffery's. Does anyone have any tips they would like to share to help me get started? Thanks in advance, bg

[gnatcatcher]

Welcome, bg1954. Great research -- others here have had good experiences buying from Greg.

Tips for getting the most accurate result from the FibroScan: Fast for at least 3 (and preferably 4 or 5) hours just prior to taking it. If your ribs are close together, such that the operator might ping a rib instead of your liver, it's best to remove the pillow and curve your torso like a banana.

If you'll be on generic Harvoni, be sure to drink plenty of fluids during treatment: clear or pale urine indicates sufficient hydration (or use the rule of thumb of one ounce of fluid per two pounds of body weight, e.g., ten 8-ounce glasses if you weigh 160). Staying well hydrated is probably wise with the other HCV meds, also.

Best wishes,

Gnatty

[Lynn K]

Hi and welcome

Just curious why the generic route as your first option? Wouldn’t you first want to use your medical insurance?

If you are approved by your insurance there is copay assistance available where you could possibly only have to pay 5 dollars per refill.

Best of luck to you

[bg1954]

Hi Gnatty;
  Glad you have heard/read good reviews on Greg, he seems like an honest person from what I've seen. I will email him after I get the scan. Thanks for the tips about the scan too, but am wondering if you are telling me to move toward the fetal position or stretch out sideways?

My doctor doesn't seem to care if I choose Harvoni or Zepatier unless he changes his mind after test Tues. but my choice will be generic Harvoni. I am a water drinker already so got that covered.

Thanks, bg

Hi Lynn;
Thanks for your response. My choice to go with generic is a personal one but not cast in stone. Insurance aside, do you feel the generic would be of less quality or pose any risk?

Thanks, bg

[strangerbynight]

I am on generics Harvoni and i got it from Greg Jeffery, he's pretty active on facebook if you are interested, i have 11 days left to go, i feel good, not really bad side just some headache but last only couple hours, i drank water but not too much, my doctor did a LFT and all my enzymes was already at normal range on the first 2 weeks of taking it, so far no viraload test yet, will get one after i finsh my meds.

[gnatcatcher]

...Thanks for the tips about the scan too, but am wondering if you are telling me to move toward the fetal position or stretch out sideways?...

...do you feel the generic would be of less quality or pose any risk?...

Stretch out sideways in a curve, so that the ribs on the liver side are spread further apart.

The generic seems to get the job done just fine.

[Lynn K]

No concerns for my part on the generic just additional costs possible or at least it would have been for me. My 24 weeks of Harvoni only cost me $30 or $5 per refill

[bg1954]

Some questions:
--So this was dormant in me for many years, does that mean, since my viral count is 11.2 million; the virus now active and out of the dormant stage?
--I've read that headaches are possible. Will some doctors allow Advil for that?

Gnatty;
Thanks for clearing that up about the stretching.

Stranger;
Thankyou for your input on Greg. It's good to hear positives that support my plan to buy from him. I will look for him on FB. 11 days goes fast and sounds like your doing good.

Lynn;
Thanks for the reply and concern. It's just a plan and I'm sure you know direction can change on a dime.

bg

[Lynn K]

Hep c is never dormant it does not sleep. It is called a silent illness because most have no symptoms and is usually discovered by accident when looking for something else unless specifically tested for.

Viral load varies all the time it will be different tomorrow viral load has really no relationship to severity of illness.

Advil aleve aspirin etc. are fine unless you have advanced liver disease then bleeding becomes a risk or any other reason you need to avoid NSAID’s or otherwise advised by your doctor.

[andrew j]

Hi bg,

Re: 'Dormancy':

Some people have 'antibody' status, only.
This means that they have been exposed to the virus at some stage, but their immune systems were able to overcome it by themselves.
It's also the status that people have when they have been cured of Hep C.

You have a measurable and persistent viral load, which means that you have an active infection, and should be treated.

(... Something else: many people with chronic-active infections have no appreciable symptoms, while others become really unwell) ...

Re: Generics:

There's no point in going the generic route unless you absolutely have to.
It's for people who can't get access to treatment any other way, and is definitely a 'Plan B' option.
(I'm not sure from what you write whether you are eligible for treatment where you live - or not?).

P.S. Best of luck with the Fibroscan!

A.

[Mugwump]

If you are among the few who can afford Harvoni without drug coverage then using a generic to save the exorbitant cost if you cannot obtain compassionate help is no sin. In my not so humble opinion.
 
Before our blue cross covered the cost we seriously considered the possibility of selling our house to gain the equity if our insurance refused. Because of many drug companies taking unfair advantage of the sick there is no universal drug coverage in Canada. Also Gilead compassionate most likely helped me. This was also just before the generics became available. If we had sold our house it would not have bankrupted us it would have just turned us into tenants again after many years of trying to pay off a mortgage. So it would have been a punch in gut but not a killer punch if we had to pay the 160 plus thousand US for 24 weeks of Harvoni.

I am sure Gilead and their distributors will gladly sell you the pills. I doubt that choosing to save money instead by obtaining generics will put any of them out of business or cause them hardship.

Cheers and all the best ridding yourself of this godforsaken horrible disease!

[Gaj]

Hi bg1954,

Just wanted to add some further information on generics:

The generics that Greg Jefferys and other reputable sources supply contain the exact same active ingredients as the originals and are usually manufactured under licensing and technology agreements with the original patent holders. They have been shown in real world trials to achieve equivalent results to the originals.

Having stated that, I agree with others that you and your doctor should exhaust any opportunities you have for insurance/patient assistance before seeking generics.

Here is a link to a post I made earlier in the year on this subject.

https://forums.hepmag.com/index.php?topic=4747.msg49059#msg49059

[bg1954]

Hi Lynn & andrew;
Thanks for the info on dormancy and Advil, seems like dormancy is more then just a simple "on or off".

Hi Mugwump;
Thanks for the post, Nope I'm not able to afford 80K for the brand name stuff. If Doc's findings with the scan say I can use Harvoni then I will seek Greg for help. Sent him an email today.

Hi Gaj;
Thanks for the link and info on generics. It is comforting and a confidence booster when planing my purchase.

bg

[Lynn K]

Hi bg

As I am understanding based on your comments you do not have any prescription drug coverage insurance is that correct?

If am am not understanding correctly and you do have prescription coverage many medical insurers are covering Harvoni treatment along with other of the new hep c medicines.

[bg1954]

Hi Lynn;

I have not discussed my insurance thus far. My concerns have been mostly treatment related and am very pleased with those who have helped me in that respect and am very happy to have found this forum. If questions concerning insurance come up I will post but if everything works out with Greg I won't be asking any. Let me get started with my treatment, then after I'm showing tests of improvement, I will be more open with my thoughts concerning insurance. I do appreciate your desire to help...

thank you, bg

[Lynn K]

No worries just want to make sure you are considering all options. Also for others who may read this thread later on and trying to make the same decisions about insurance vs generic route.

Thankfully, I had good insurance through my employer and so between my insurance and Giliead copay assistance I paid $5 per refill.

Had I needed to go the generic route it would have cost me significantly more although a far cry from what self pay would have cost for 6 months supply $189,000. If that had been my only option I would still be infected with hep c as there is no way I could pay for that.

Best of luck to you

[Mugwump]

Hi Mugwump;
Thanks for the post, Nope I'm not able to afford 80K for the brand name stuff. If Doc's findings with the scan say I can use Harvoni then I will seek Greg for help. Sent him an email today.

 
bg

Something important to mention here bg:
You may wish to have a resistance strain test done before deciding upon a course of Harvoni or the generic equivalent. When I took Harvoni a little was known about NS5a RAV being why some people with genotype 1 and others sub groups mysteriously fail treatment and subsequent resistance tests were developed.

It is only withing the last two years that the reasons have come to light for most doctors unless they specialize in treating HCV and are up to speed on all the developments in testing. The presence of an NS5A variant resistant to Ledipasvir in Harvoni is the cause of most Harvoni treatment failures in individuals with GT1 and GT2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961994/table/T2/

If your insurance will not cover the test costs then shame on them. But your doctor should be aware of the fact that there is around a 5% chance of failing treatment and it can be determined if you are in the small group most likely to not respond to Harvoni.

I edited the post after I saw that you know your genotype....MY BAD... but if you can afford a resistance test or have it coved it might be good for your piece of mind knowing the treatment will work with an almost certain degree of confidence. Resistance testing has improved a little in accuracy since last year and might even have come down in cost in some places.

I know for sure that both myself and my wife would insist upon a resistance test first if I was forced into paying a huge amount for Harvoni knowing what we know now about the disease.

[bg1954]

Hi Mugwump;
Do you know what the test is called? I have 7 pages of tests one named HCV Type W NS5A Reflex which shows my type as 1b. Don't see any other with NS5A in the name.
bg

[bg1954]

Hi all;

Just got back from hospital. My FibroScan results, as interpreted by Doc, are between 0 & 1 which is better then I had mentally prepared for. Asked Doc about NS5A resistance test and he doesn't feel I need it since my genotype is 1b and he has set-up his comp. to suggest it for 1a types. He is a very nice Doctor and very knowledgeable. He addresses my concerns openly and respects my view, I feel very blessed having him. I gave him info on Greg J. and he is supportive. He has had other patients buy outside the system too. Gonna get in touch with Greg now.

Thanks, bg

[gnatcatcher]

Congrats on the borderline F0/F1 result!

[strangerbynight]

Hi all;

Just got back from hospital. My FibroScan results, as interpreted by Doc, are between 0 & 1 which is better then I had mentally prepared for. Asked Doc about NS5A resistance test and he doesn't feel I need it since my genotype is 1b and he has set-up his comp. to suggest it for 1a types. He is a very nice Doctor and very knowledgeable. He addresses my concerns openly and respects my view, I feel very blessed having him. I gave him info on Greg J. and he is supportive. He has had other patients buy outside the system too. Gonna get in touch with Greg now.

Thanks, bg

Wow thanks for the info too, i am in a very similar situation like you, genotype 1b, F0-1 and i am on generics harvoni from Greg Jeffery's, good to know about the NS5A testing there cause i did not go for the test or never been mentioned by my doctor. Good luck with your journey, i have 7 pills to go..

[Lynn K]

Congrats on the low Fibroscan score that is great news!

I was likely infected for 30 years before on my 4 liver biopsy I was diagnosed as F4

I have read only about 20% will progress to F4 cirrhosis over 20 years time so really at least initially only a minority of patients will develop signifigant liver damage. Of course the longer you are infected the more likely you may progress.

Congrats again and best of luck on treatment.

[bg1954]

Hi all;

Placed order with Greg yesterday, looking forward to receiving them soon. Now all I have to do is hurry up and wait...)

Thanks for all the info so far, bg

[Mugwump]

Hi all;

Placed order with Greg yesterday, looking forward to receiving them soon. Now all I have to do is hurry up and wait... )

Thanks for all the info so far, bg

FANTASTIC!!!
You should have no problems reaching SVR and it is great to hear that you have a doc who is fully up to speed on the details! Some here have had a problem with doctors who do not upgrade their knowledge base adequately as the treatment standards are in flux with the advent of DAA's. As far as the RAV testing goes I am not certain of the details, if your doctor says it is not necessary because of your specific sub genotype then great.

Getting a 12 week eot SVR test is a life changing experience especially for those of us who thought they were doomed to live out their days in fear of accidentally infecting others! Very much looking forward to seeing you post that you are free from this curse.

Cheers
Eric

[bg1954]

Hi Eric;

Thanks for the support. Just got a tracking number from Greg to start checking in 3 days or so. Very anxious to start meds and get cured. Doc wants me to call before I start meds to answer any questions or concerns. He has scheduled me for the follow up blood tests already and am glad to see him do that without me asking. Would definitely refer him to anyone so far. Will keep posting on my journey...

Thank you, bg

[bg1954]

Hi all;

I was wondering if anyone had any knowledge of taking C60 while on Harvoni? I just received my C60 olive oil this week and anxiously started taking 1/2 doses Mon. thru Thurs. but none today. It's used for it's anti-inflammatory/healing effects. Thought I better ask before I resume taking any more since my shipment of Harvoni should arrive any day now.

Thank you, bg

[Gaj]

Hi bg1954,

I hadn’t heard of C60 olive oil before but a quick search shows it is olive oil that has “bucky balls” ( https://en.m.wikipedia.org/wiki/Buckminsterfullerene ) of c60 carbon added to it. Couldn’t find a lot else other than advertising, testimonials, etc.

However, the usual recommendation for Harvoni and the other HCV treatments is not to use supplements other than those checked by your doctor as medically necessary and suitable for use with the meds you are taking. This is due to the possibility of some ingredients interacting with the meds in unforeseen ways as it is not possible to check for interactions with everything that you may consume.

If it was me, I would not use C60 during treatment for that reason (normal olive oil is fine). Also worth noting that there will almost certainly be significant and rapid reduction in inflammation of your liver during treatment and lower ALT/AST levels are a good indicator of this.
Many of us (not all) have also found that various other types of inflammation such as arthritis/rheumatism are improved with treatment suggesting that the problem was at least partly due to the HCV. In my case the almost crippling joint pain I suffered for over ten years started to clear within a month of commencing my 2015 Tx and had completely disappeared by the end of this year’s successful Tx. Six months on and still no signs of it!   

.....when you successfully complete treatment you could try it if you find you still have inflammation issues that your doctor can’t help with.

[Mugwump]

c60 is purported to do something which helps in neutralizing free radicals. Same claims made about grape skins, blueberries, apple peel and the list is endless.

The fly in the ointment is that ascertaining exactly how much effect any of these antioxidants have is a subject of endless debate. A little bit of charcoal in ones diet is not a bad thing, I usually get most of mine in the morning, more often than not when we are forced into taking the batteries out of the kitchen smoke detector. As penitence for my sins I have tried substituting olio based margarine on my toast but it just does not cut the mustard in comparison to free radical causing good old fashion butter.

[bg1954]

Hi Gaj;
Thanks for the response. Your right, I'm going to wait till I talk to Doc. first, but I'll be surprised if he has any knowledge on c60. I heard someone on Youtube say it would enhance any drugs effectiveness, but now as I'm considering the possible risk of Harvoni not working I'm going to wait till after my treatment. The risk is too great and my health and family are too important. I've always lived in the extreme zone and thinking it would help an already good cure is again extreme thinking. I'm only 63 so maybe when I grow up I'll learn to consider the extreme zone before entering... Thanks again for your testimony, as I too have pain in many joints from a life of construction work and hearing that may be part of the cure is comforting. Glad to hear your joint pain is gone.
Thanks, bg

Hi Mug;
Blueberries, yum yum, but not sure about charcoal, will have to look that one up. Yes C60 has many claims and if they are fully proven hopefully it will become more widely available. As for your sins, no worries, someone else already took care of those for you, remember? As for the love of butter, I believe olio is much worse for you. I went back to butter years ago but it is too harsh on my stomach so I've been using a blend of olive oil and butter and less of it.
Thanks, bg

[Gaj]

Hi bg1954,

While c60 is a form of carbon and probably(?) okay, it is in a man made molecular structure which could possibly effect how it interacts with some medications. I doubt there has been any research done on that yet.

One thing I forgot to include yesterday is a link to the Liverpool University HCV Drug Interactions checker which your doctor and yourself can use if you need other medications such as antibiotics or others during your treatment. The ‘new’ version seems a bit clunky to use but there are free Google and Apple apps that work well on phones and tablets. Go to whichever App Store you or your doctor use and search for “Liverpool HEP iChart”. Generic Harvoni is “Ledipasvir/Sofosbuvir” for the checker.

As for extreme zones and growing up, I like the view taken in “The Cape” by Guy Clark - https://m.youtube.com/watch?v=NyjfwIMQ7iw 


Hi Eric,

Yep, only good old fashioned butter works with things like toast. I’ve grown up just enough that I figure I deserve the occasional small treat. 

[Mugwump]

To be clear anything that works as an antacid is not good 3 hours before or after taking Harvoni, it can effect the absorption of the ledipasvir component in the drug. Carbon based substances are know antacids and activated charcoal is routinely used to treat accidental acid based poison ingestion. So upon further thought, during treatment my advice is not to mess with taking anything that might effect the uptake percentile of the drug!

[bg1954]

Hi Gaj;
Thanks for the iChart, I'll ask Doc. if he's used it. I don't have a smart phone and Android or Apple stuff I know nothing about. One nice thing is I have a connection with the Doc's computer at the Hosp. via desktop so if I need to ask a question I can use that.
Thanks for the Cape song by Guy Clark, sounds like he was watching me from a distance all this time...)
Thanks, bg

Hi Mug;
Glad you mentioned the antacid precaution as I been taking them regularly due to stress causing me indigestion. Wife likes to fry foods and couple that with eating snacks at night and stress at work it has given me a whole new problem the last 2 years. I usually start with some baking soda in warm water then if that doesn't help some tums, so I'll ask Doc about that too.
Thanks, bg

[Lynn K]

Check out table 5 on page 12


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

[bg1954]

Thank you Lynn

bg

[Gaj]

Hi bg,

Just checked the desktop version again and it seems to be working okay now so probably just glitch or maintenance last time. Here is a link:

https://www.hep-druginteractions.org

PS If you scroll down the page you will see it is sponsored by most of the major HCV pharma companies as an up to date quick access checker for the international medical community but can also be useful to patients.
(e.g. In my case I needed antibiotics for a tooth abscess while on Tx. Dentist had no idea but was able to show it to him and we found the dental suitable ones that were okay to use.)

[bg1954]

Hi Gaj;

Thanks for that link, works great. Funny you should mention the dentist. I have a moler with a broken cap, 75% missing, that is very sensitive. I'm hoping to tuff it out thru my treatment before getting it fixed, only because finances are tight right now, however if it needs care it is great to have that link to find the right antibiotic. It is usually Amoxicillin for me as a dental work precaution which looks ok on the chart but if there are complications then I'm sure it may be different.

Thanks again, bg

 

[bg1954]

  Dancing time...Thank you Greg Jeffery's and those here who gave Greg a thumbs up. My meds just arrived via USPS. They are Ledifos from India, Ledipasvir 90mg & Sofosbuvir 400mg tablets. Gonna contact Doc to get the low down before starting.

bg

[KimInTheForest]

Congrats bg! Sounds like you are (very soon) on your way to getting cured!

kim

[bg1954]

Hi Kim;

Yes, just got off the phone with Doc's nurse and I start tomorrow. First blood test in 30 days will be exciting too...

Thanks, bg

[KimInTheForest]

Hi Kim;

Yes, just got off the phone with Doc's nurse and I start tomorrow. First blood test in 30 days will be exciting too...

Thanks, bg

Wunderbar!

[gnatcatcher]

bd, you're on your way to a cure. Just remember to drink plenty of fluids.

Gnatty

[bg1954]

Thanks Gnatty, will do.

bg

[Gaj]

Hi bg,

Excellent news!

PS sent you a PM

Cheers
Gaj

[bg1954]

Hi Gaj;

Thanks, I'm excited. Gonna start tomorrow morning...

PM response...

Thanks, bg

[bg1954]

Hi All;

Has anyone here stopped using Amlodipine during Harvoni treatment? Did you substitute with something?

My blood pressure is the lowest dose possible of Amlodipine (5mg.) and I also take Hydrochlorothiazide(12.5mg.). Looking on the drug chart the Amlodipine is listed as a possible interaction, Hydro ok. My Doc. says Amlod. is ok since I'm on the lowest dose but I'm still interested in stopping it until my Harvoni treatment is complete. The Hydro. (water pill) is used for high blood pressure also so I will continue that one.

Thanks, bg

[Lynn K]

If your doctor feels it is ok I would believe your doctor. Did you read what the potential interaction was and how frequently it occurs? Could be why your doctor says it is ok.

Just my 2 cents for what is worth

[Lynn K]

I did just find this info

https://www.drugs.com/drug-interactions/amlodipine-with-harvoni-172-0-3567-16903.html

Interactions between your selected drugs

There were no interactions found in our database between amlodipine and Harvoni. However, this does not necessarily mean no interactions exist. Always consult with your doctor or pharmacist.

[Gaj]

Hi Lynne,

While ‘drugs.com’ is a good resource I believe bg is using this checker which attempts to have the most up to date info on DAA interactions.

https://www.hep-druginteractions.org/checker

It does raise this potential (amber flag) interaction:

”Summary: Coadministration has not studied but may increase concentrations of amlodipine or ledipasvir due to P-gp inhibition. Although a clinically significant effect of ledipasvir is considered unlikely, close monitoring of heart rate, blood pressure and for increased side effects of amlodipine is recommended.”

So not a proven interaction but it is possible that the effective dosage of Amlodipine could be increased when administered with Harvoni.


bg1954,

I wouldn’t just stop using it, been there done that with my own BP meds, although not during Tx, and ended up back at Dr. 

I’m not a doctor so take this with a grain of salt but a during quick read up on amlodipine it appears that it can be prescribed for just hypertension and also for those with hypertension/angina/cardiac issues. If just for hypertension than there are very likely a number of other meds that would do a similar job but substitution may be more difficult if you take it for the other issues.

Per the quote above, if your doctor still wants you to take amlodipine then increased monitoring is advisable just to make sure you don’t have an interaction.

I did find that there is a 2.5mg pill available for those who need it but can’t tolerate the normal minimum dose of 5mg. This may be something for your doctor to consider while you are on Tx.

[bg1954]

Thanks Lynn and Gaj;

Yep, I think I will be calling my regular Doc. to talk this over. It is just for high blood pressure. I did see other drugs on the interaction site that don't have any adverse effects with Har. I'm gonna have to ask my Doc. to consider one of those. I'm wondering if it would be affected if I take it 4 hours after the Harv. and maybe cut it in half? We'll see what Doc. says tomorrow.

Thanks for the quick responses, bg

[Gaj]

Hi bg,

”I'm wondering if it would be affected if I take it 4 hours after the Harv.”

Unfortunately in this case that won’t make a difference as the interaction isn’t occurring in the stomach. P-gp is a cellular protein that regulates uptake/removal of chemicals from our body cells via our bloodstream, etc. So what they are saying in this case is that there may be an increased uptake and/or storage of Amlodipine into body cells which may increase its concentration over time and cause issues. Thus their recommendation for increased monitoring.

[Lynn K]

As to cutting in half it depends on the med but for many drugs that have a coating it can effect absorption of the med so you would want to think about that also

[bg1954]

Hello Gaj and Lynn;

Thanks for the responses. My Doc. has a 25mg. script for me at the office. I also bought a BP monitor to keep an eye on it. Been taking the 50mg dose the last 2 days, felt like my pressure was up. Previously I was cutting them but that wasn't working too good. Since my Dad had strokes I'm not gonna take any risks but if I can get my plan to pay for both 25 & 50mg Amlodipine I may alternate.

Thanks, bg

[bg1954]

Hello all;

Just got my first month blood test results back.

HCV RNA (IU) Not Detected
HCV RNA (log IU/ml) Not Detected

Also pain in joints of knees and hips has ceased.

Thanks, bg

[gnatcatcher]

Glad to hear all that good news -- congratulations!

[Mimosaplace]

Hello I am also new here. I found out in 2014 that I have Hep C genotype 4. I have been trying to get treatment since the with no luck. I don't have any symptoms I only found out when I gave blood that I was infected. I recently called about a clinical trial and now I'm waiting to see if I can get in. I don't have my results handy but I do know that my viral load was 10,000 when I got my blood test back. I had a fibroscan done as well and they said that it was great. I am so confused nervous anxious and scared all at the same time. I just want this gone out of my body. Is there any suggestions?

[Mugwump]

Hello I am also new here. I found out in 2014 that I have Hep C genotype 4. I have been trying to get treatment since the with no luck. I don't have any symptoms I only found out when I gave blood that I was infected. I recently called about a clinical trial and now I'm waiting to see if I can get in. I don't have my results handy but I do know that my viral load was 10,000 when I got my blood test back. I had a fibroscan done as well and they said that it was great. I am so confused nervous anxious and scared all at the same time. I just want this gone out of my body. Is there any suggestions?

Genotype four can be treated with Harvoni for 12 weeks. The generic route is possible if you cannot get Harvoni.

[Mimosaplace]

My Insurance has denied Harvoni Zepatier and Technivie. Hopefully the clinical trial with Mavyret will come through.

[Lynn K]

Hi and welcome,

Hep c is called a silent illness because the majority of people infected have no idea they have hep c. I found out like you did when I donated blood in 1990. I had probably been infected for about 11 years.

Viral load has no relationship with severity of hep c infection. You have a low viral load which can be slightly easier to treat but really even those with very high viral loads can just as easily be cured. My viral load before treatment was about 2.4 million which was a moderate range.

Great news on your Fibroscan once you are cured you can go back to your normal life the same as if you were never infected.

The old meds to treat hep c were not very effective and the new generation of meds were only beginning to be approved in 2014 but they were initially mostly approved to treat genotype 1 the most common genotype of hep c.

I found this on Wikipedia about the most common new medicine recommended for genotype 4 there are a couple of other drugs recommended.

“Glecaprevir/pibrentasvir (trade name Mavyret in the US and Maviret in Europe) is a combination drug containing glecaprevir (100 mg) and pibrentasvir (40 mg). In the United States, it was approved by the Food and Drug Administration in August 2017 for treatment of hepatitis C.[1] In Europe, it was also approved in August 2017 for the same indication.”

So this is probably why you had to wait for treatment as there were new more effective drugs coming down the pipeline.

Here is another link from the University of Washington about treating genotype 4

 https://www.hepatitisc.uw.edu/go/treatment-infection/treatment-genotype-4/core-concept/all

It looks like Mavyret is about 95% effective in treating GT4 in clinical trials.

I was in a couple of clinical trials to treat my hep c before there were any effective medicines. I had already treated 2 times with the old treatment of self administered shots of interferon for 6 months duration with no effect on my hep c infection.

They take good care of patients in clinical trials with more frequent blood testing and doctor visits while on treatment. Do you know the name of the trial medicine? It could be for one of the already approved medicines undergoing additional evaluation. Will there be a placebo arm in the trial? If there is a placebo arm and you are in that arm will you be able to get treated with the real drug later?

Just curious why you are not seeking treatment with Mavyret or one of the other very recently approved medicines. Are you seeing a doctor experienced in treating hep c so they are up to speed on the newest treatments? Is the problem your insurance being difficult to get approval?

Anyway ask away with any questions especially if you have more specifics about what treatment you will be taking.

Here is a link to the current AASLD recommendations for initial treatment for GT4:

https://www.hcvguidelines.org/treatment-naive/gt4/no-cirrhosis

Good luck

[Lynn K]

Ok I took a while to post so there were a couple of responses before I posted.   

Mavyret was approved in August can you get insurance approval for this medicine?

[Lynn K]

While the number of participants were small in clinical trials for Mavyret and Harvoni both had 100% cure rated for GT4

Why did they deny Harvoni? Did you and your doctor appeal? Many here when Harvoni always first approved had to fight with our insurance to obtain treatment.

Even though I have cirrhosis I had to appeal to my insurance.

[Mimosaplace]

I am trying to get Mayvert within the clinical trial. I have reached my witts ends with my insurance denials and decided to sign up for this clinical trial. I have a specialist in Memphis TN that prescribed all the other medicine and I even worked with a specialty pharmacy for my appeals. I have called so many people that my head is spinning. Since the mayvret has been approved do you think I should submit that to my insurance for approval? I’m literally in heartbreak that I am having such a hard time! My insurance denied Hatvoni Bevause  they stated my Fibroscan wasn’t bad enough. I have BCBS and pay out of pocket for this insurance. I’m really all alone with this and don’t understand what direction to go! I hate to get my hopes up because every time I do some bad news comes!

[bg1954]

Hi Mim;

Glad your here seeking advice because those who I have talked with were very knowledgeable and helpful. I'm sure you will find out what you need to get cured.

You do sound stressed though and that is not a good thing for your health. I know it is not easy but try to relax some for both your mental and physical well being. If you cannot get the meds through insurance you can buy Harvoni overseas. I bought my meds from India through Greg Jeffery's. You can search him on youtub or goog. They are generic and much cheaper. I had a viral count of 11,200,000 and after first month the count is undetectable, so they are good meds.

Don't worry, you got this. Keep researching and things will fall in place...)

bg   

[Mimosaplace]

Thanks I’ma look into that!!

[Lynn K]

From what I understand if you have been denied 3 times by your insurance your next move would be to appeal to your states insurance commissioner. I personally don’t know anything about this process but some here have done so successfully.

It is a ridiculous situation that the insurance we pay for won’t provide needed medicines because we are not sick enough. Really criminal in my book. I also have BCBS through my employer. Is the PBM Express Scripts? They are the absolute WORST. You should read the comments people make in their Facebook page about delayed and denied medications.

I got this from one of their canned responses to unhappy customers on Facebook how to contact them. This is how I won my fight with them by contacting them directly.

“If you still need assistance , please feel free to email ExpressRxHelp@express-scripts.com or reply by private message at any time with your information.”

Others here have obtained legal Harvoni from overseas at significantly reduced cost vs US pricing. That is the Greg Jeffries info provided by bg1954

[Gaj]

Hello all;

Just got my first month blood test results back.

HCV RNA (IU) Not Detected
HCV RNA (log IU/ml) Not Detected

Also pain in joints of knees and hips has ceased.

Thanks, bg

Great news bg. 

I also had knee & hip pain pretreatment that resulted in groans and stretching every time I got out of a chair. Much like you, that resolved 3-4 weeks into treatment and hasn’t been a problem since. Here’s hoping you have the same success in that regard.

[Gaj]

Hi Mimosaplace,

As Lynn says, if you have been rejected several times by your insurance company you can appeal to an independent review board. After all, you have paid them good money for their services which they are now refusing to provide you with. 

From what I have read the Patient Advocate Foundation has provided advice and support to members here on how to appeal when in a similar situation to yourself. Here is a link to their webpage.

http://www.patientadvocate.org/help.php


PS Per bg1954’s comments here is a link to Blogs in the Community section of this site. If you scroll down you will find Greg Jefferys blogs regarding HCV medications and treatment.

https://www.hepmag.com/bloggers