Scared and wondering if I should wait.....

[Thereistomorroe]

Recently found out that I'm positive. GT3. Bloodwork within normal range , even liver function (ALT, AST), Fibroscan 0-1. Platelets actually slightly elevated. Have some extrahepatic manifestations ( depression, tingeling in hands and feets, early menopause, inability to focus, memory loss..), which may or my not be HCV related . In my late 40ies. Suggested therapy Sov+Daklinza. Not sure if I should be even fighting the insurance for this or not? Scared to start therapy as it seems that many people clear the virus, but then end up with other issues that they did not have before the therapy. I understand that achieving SVR is important, however if you clear the virus, but end up actually lower life quality then before when you did not even have symptoms, what is the point? On the other hand, chances for clearance are better when younger and while no fibrosis, especially for GT3. Still, currently inclined to wait a few years with hope that better drugs and lower costs might be available in near future, or at least more evidence of long(er) term side effects of current drugs. Looking to hear more from GT3s and those that were on Sov+Daklinza. Any other advice also welcome.

[gnatcatcher]

Thereistomorroe, welcome to the Hep forums. Your post is very thoughtfully written. It does seem like, as long as the extrahepatic manifestations don't trouble you too much, treatment is not something you need to rush into. And you are already aware that with F 0-1, you'll probably have to fight the insurance company, perhaps all the way to the outside review phase when extrahepatic manifestations count for more.

I waited out the PegINF/RBV era because of a contraindication and a strong inner sense that taking that treatment would indeed make me worse. Pressure was put on me by doctors of the "damn the contraindications, full speed ahead" persuasion, even though those doctors were seeing me for other things. But I knew that the times treatments had harmed me were precisely when I had reacted to a diagnosis with a "the sky is falling," hurry, hurry, hurry outlook.

It's a different era than when PegINF/RBV was all there was. Cure rates are much higher; casualty rates are much lower, but higher than zero, with long-term effects still unknown. Has there ever been a pharmaceutical with a casualty rate of zero? (How many thousands of people have taken Zantac without problems, yet every time I took a Zantac tablet, my brain swelled up for hours.) Will there ever be a time when the current treatment is so terrific and problem-free that people aren't waiting for something better to come along? When will we be at a time when the new "latest greatest" treatment has a long enough track record without there being some other potentially more tempting treatment under development luring a person to wait?

I started Harvoni only nine months after its FDA approval, which would normally be way ahead of my comfort zone. Having long ago accepted being mortal, which I summarized as "if nothing else kills me off first, then HCC will," my basis for going ahead was an inner clarity that, yes, this treatment at this time was what I was to do. I knew that inner clarity wasn't the same thing as a crystal ball -- it was no guarantee that I wouldn't be harmed and would be cured, it was only a sense that I was to have this particular experience now. Thankfully, so far, so good -- I've had only intermittent, minor side effects during and after treatment, and my liver has experienced great relief.

You seem to have read a lot, so you know the odds. Can you sense whether your unease is of a general nature (pharmaceuticals always entail risk) or whether you are having a premonition regarding the current treatment and your specific body? It can take time to tease out the difference, time that you seem to have. I was very glad I had emotional clarity before I swallowed the first pill, and I wish the same for you.

Gnatty

[jakas]

@Gnatty I wish there was a Thankyou button/tab here I would press it so often for you. Thanks for all you contribute here Happy new year.

[gnatcatcher]

jakas, thank you for saying that. I'm paying it forward: these forums were in great part how I came to have the emotional clarity that enabled me to take Harvoni. I've noticed you also have been doing your human best to be helpful to others here. You answer posts that I couldn't begin to answer. Happy New Year to you, too -- and to everyone else here in Heplandia.

Gnatty

[Thereistomorroe]

Thank you so much for your response! I'm just so scared to go with the therapy, even if approved. Many different fears, one of them mesing up with the immunity system and impacting its abilities to keep other illnesses at bay ( cancer etc.). For now, it seems to be doing a nice job as I'm relatively healthy.
Your response makes so much sense and it feels so good to be able to talk to someone about the whole situation, so thank you!
Yes, I do know a lot about different possibilities as all I do since I have been diagnozed is to read about HCV.
For now, it seems to me that it is better to just try and control it with alternative treatments ( milk thistle, ALA etc.). And monitor progress...On the other hand, mentally it s very hard as it is consuming all of my time, thoughts,feelings...
Hoping for more shared GT3, daklinza/sovaldi experiences...hoping for new drugs...hoping for cost to go down....
P.S. yes, I realize my posts are scaterred, my thoughts are too  ...I think that is my biggest issue with HCV, the mental impact...

[beto]

Thereistomorroe,

My choice to go for harvoni began over 4 years ago when my doctor didn't even know about it, but I had done research into new drugs on the horizon.  This year I fought through 4 denials to get it and it would appear for me in the nick of time.  As for you, (as gnatty eloquently accessed) you need not be in a hurry.  However, if it we me, I would use that luxury to see what is possible.  If you can get your insurance to anti up (not likely) for an 8 week course, perhaps just knocking it out would be a good option...at least to consider.  But, this is definitely not a cause for urgency.

Most likely tx would be easy.  Gnatty is right, if it bleeds it leads.  I am more likely to post a bad reaction than a side effect free day.  Of course if I am feeling remarkable, that I would post as well.  Though some have some pretty bad effects, a great majority do not.  A facebook friend of mine with cirrhosis (tx past failures) began treatment while embarking on a  two month pilgrimage/walk through half of europe (she's in her 50's) and regularly posted how energetic she felt on Harvoni.   

Anyway point being, you might as well at least check into it.  If it becomes a fight with the insurance, not a big deal, because unlike many, there is no big rush.  Gnatty's right, there could be more treatments down to pipe, too.

good luck

[KimInTheForest]

Welcome Thereistomorroe! I was Geno 3a (probably for 45 years) before being cured earlier this year with 12 weeks of Harvoni+ribavirin in a clinical trial. I started my treatment in May, so Daklinza had not yet been approved. For us Geno 3's, the only way Harvoni was guaranteeing a high cure rate (100% in New Zealand trial) was in conjunction with ribavirin.

My fibrosis was F2 before treatment, and my liver enzymes were about 2x normal. But other than that, I wasn't aware of Hep C adversely affecting my life.

If I had it to do over, under the same conditions of what was available to me at the time in May 2015, I would still go forward and do the Harvoni/ribavirin trial. The riba anemia and other riba issues were a drag, but they are temporary. The cure is permanent.

If I were just starting to look into treatment today as a Geno 3, I would do everything possible to get 12 weeks of Sovaldi+Daklinza, and I would willingly get it overseas via the fixhepc connection (Australia Buyers Club) and the worldwide clinical trial they are now running.

Or I would go with the even newer thing: 12 weeks of Sovaldi+velpatasvir, sourcing it generically overseas if needed.

As for some people reporting a lower quality of life post-treatment with the new drugs, even though they are cured of Hep C... From everything I have read here (and from my own experience, because I was one of those people), that situation is temporary. Some people's bodies take longer than others to unwind from a lifetime of Hep C, and the rapid clearing of virus, and the weeks of powerful drugs and whatever changes the drugs themselves may have temporarily imposed upon our bodies.

It is natural to be apprehensive about ANY treatment opportunity. I think most of us were. I certainly was. I had pretty much talked myself out of participating in the trial that cured me, because of fear of possible side effects. I am so very glad I didn't. No matter what new drugs come along, it will always be possible to say "maybe if a wait another year or 2, something even better will be available..."

I think we are at a stage with these new drugs, and their virtual guarantee of cure with side effects that are both manageable and temporary, that it is wise for anyone with Hep C to go forward with treatment sooner rather than later.

But it can be a difficult and stressful choice. I am sure the members of this forum will support you, whichever choice you make.

Best of luck with your decision!
kim

[gnatcatcher]

...
P.S. yes, I realize my posts are scaterred, my thoughts are too  ...I think that is my biggest issue with HCV, the mental impact...

First of all, your posts don't seem scattered. You're dealing with lots of data and no easy organizational scheme, so you're doing as well as any human can.

Second, you mentioned that you recently found out that you're positive. After a major diagnosis (I've had quite a few!), once the insulating shock wears off, thoughts flood in, then careen every which way. It may take a while before you know how much of the memory loss and inability to focus is due to the aftereffects of receiving a major diagnosis, versus how much is due to the HCV.

Thankfully, Kim has provided info RE: GT3. I echo her close: "I am sure the members of this forum will support you, whichever choice you make."

Gnatty

[MaryC]

Recently found out that I'm positive. GT3. Bloodwork within normal range , even liver function (ALT, AST), Fibroscan 0-1. Platelets actually slightly elevated. Have some extrahepatic manifestations ( depression, tingeling in hands and feets, early menopause, inability to focus, memory loss..), which may or my not be HCV related . In my late 40ies. Suggested therapy Sov+Daklinza. Not sure if I should be even fighting the insurance for this or not? Scared to start therapy as it seems that many people clear the virus, but then end up with other issues that they did not have before the therapy. I understand that achieving SVR is important, however if you clear the virus, but end up actually lower life quality then before when you did not even have symptoms, what is the point? On the other hand, chances for clearance are better when younger and while no fibrosis, especially for GT3. Still, currently inclined to wait a few years with hope that better drugs and lower costs might be available in near future, or at least more evidence of long(er) term side effects of current drugs. Looking to hear more from GT3s and those that were on Sov+Daklinza. Any other advice also welcome.

Thereistomorroe...welcome!  I really can't add to the profound wisdom shared here by others (Gnatty, Kim, Jakas, and Beto), but can tell you about me and my experience as a fellow GT 3a who completed treatment with Sovaldi and Daklinza on 12/9/15.

I am a 59 year old female who was only recently diagnosed with chronic HCV (April of this year!!) during a routine physical.  Not sure how or when I contracted this virus (and have given up trying to figure this out finally), but had few risk factors so was never tested until my routine physical showed elevated LFT's (for the first time).  I had been what my friends and family consider 'the picture of health and wellness'.  I was very active...ran regularly including several half and full marathons, hiked, backpacked, loved winter hiking and 'peak-bagging'.  I started to slow down (yes...I realize I AM getting older), but it was more than just age-related.  I felt tired all the time and ached...a lot.  I also noticed some difficulty with concentration and attention.  I felt like my thinking was slowing down.  I also developed pretty significant Raynauds (which is autoimmune related) making my love of winter peak-bagging, backpacking somewhat dangerous.   Needless to say the HCV diagnosis was a surprise, but as I read more about EHM, I realized this all might be related to my diagnosis.  My GT seem to come as a surprise to my Hepatologist (he recently indicated he has seen very few GT 3a's in the area where I live).  When he recommended my treatment, Daklinza was only recently approved (July 2015),  My first impression was...'do I want to take my chances on this very new medication??'  But as I read more about HCV and GT3 specifically, I decided that I wanted to be cured!  I did have to fight through the initial denial from my insurance company, but I wrote a letter on my own behalf and referenced treatment recommendations and the fact that GT 3a, specifically, has a more aggressive course.  My denial was overturned and I did complete 12 weeks of Daklinza and Sovaldi.  Quite honestly... my treatment was very easy and tolerable.  Everyone responds differently to the medications, and I was lucky that since treatment naive, I did not need the riba.   During treatment, I worked full time, ran, worked out, and felt pretty good - maybe better than I felt in the last few years.  My only side effect was a very mild headache and feeling a bit 'activated' at times.  As I mentioned, I completed treatment on 12/9/15.  My EOT vl was negative (I have been negative since week 4 of tx), and my LFT's are all back to normal.  I am so happy and grateful for the opportunity to be treated (and hopefully cured).  My wish for the new year is that access to treatment be made available for everyone!

I wish you the best in making the right decision for you.  For me...I have no regrets, and am anxiously awaiting SVR 12 and 24!  I am confident I WILL get there!

Mary

[Lynn K]

Hi

Everyone has provided great advise just wanted to add one additional thought as you are a woman are you planning on having a child? While low at about 5% there is a risk of transmission to a baby you may want to consider treating prior to becoming pregnant so you won't have that worry hanging over you.

Also I have seen many people talk about the stigma of having hep c having relatives bring over their own food and to be afraid to touch them. It is their ignorance of course be we must live with that. If you have a partner or are out dating and looking that is something you currently need at some point to discuss that once you are cured it would be a non issue.

Just a couple of more things to consider in your quality of life living with hep c to add to your decision making process.

So sorry you have received this diagnosis and best of luck to you what ever you decide

Lynn

[Gaj]

Welcome Thereistomorroe,

Lots of great advice already and as a GT3a I would add my recommendation that you treat as soon as possible. I don't wish to scare you but as stated this can be a very aggressive and difficult to treat genotype and the best cure rates are seen in those like yourself with little current damage to your liver/body from the virus. With the modern DAA medications the side effects and risks, if any, are usually minor for the short treatment that it appears you would require. But if you wait and the illness accelerates as it can quite suddenly with GT3 then the treatment and chance of cure becomes much more difficult with greatly increased risks.

Gaj

[Mike]

Hi Thereistomorroe,

It would take 3 pages for me to write about the quality of life improvements I've received since being cured.

It is important to note that the vast majority of those being treated, complete a 12 week course of treatment and the HCV shadow is behind them. They don't report, they don't frequent HCV forums - they just get on with their new, improved life.

Although there are some who have reported side effects, the vast number don't experience any.

Moreover, there are no studies that suggest that the new HCV treatments lead to other aliments - unless improved quality of life is considered an aliment.

It is alsoworthy to note that the majority of those being treated are in their 50's, with all the associative issues that go along with growing old.

Many have been infected for decades and have had HCV symptoms/side effects that masked the pangs of aging. That little back ache was minor compared to the systemic issues that HCV wrought.

Once cured, and the HCV side effects dissipate, the aches and pangs of aging are more evident. Folks start feeling for the first time in decades. They start living.

Unfortunately, some ascribe every ache, pain or upset stomach to the recent HCV treatment. They make it a scapegoat for everything. When, in fact, they are just noticing things that have always been there; but were masked by the Hep-C infection and residuals.

My advice is to get treated and start living!

Best wishes, Mike

[Thereistomorroe]

Thank you all! You brought me to tears! It means so much to be able to talk to someone about this! I decided not to share with anyone and I'm sure you all know how much of a burden that is in itself, but I'm not ready to let anyone know.
Thank you for sharing your experiences with me. I'm too scared right know, so it means so much when you say you will support me no matter what. Thank you!!!
Some great suggestions here...I do not have to worry about treating before pregnancy at my age, but not being able to have a relationship is a factor that I will have to consider. Currently, that is last thing on my mind, but on the other hand I would not like to stay single for the rest of my life.
I do realize that I have a better Chance to clear this virus while I'm younger and not requiring other medications. However, I'm telling my self that maybe healthy food and supplements will be enough for controlling the virus, even if they seem not be strong enough to clear it.
On the other hand, maybe I should go into fight with my insurance ( I received a denial for sofo+dak), especially given the fact that that will probably take a while. Just as sofo+vel from Gilead would take a while to get approved and again who knows if it will be better than sofo+dak.

[Lynn K]

Hi

I didn't mean to imply you couldn't have a relationship with hep c but for me it was always on my mind when I was seaking a partner. Hi nice to meet you my name is Lynn and I have hep c and cirrhosis. Great icebreaker right?

Also I have heard that hep c liver damage is thought to speed up for women after menopause possibly estrogen helps to slow liver damage and why typically men have more liver damage sooner than women.

There is not a lot of evidence any special diet or herbal supplement will help slow liver damage. There have been some trials but with mixed results. Of course not doing things like drinking and being cautious with and avoiding taking Tylenol in excess go without saying.

As Kim mentioned there is also to be considered extra hepatic manifestations here is some info I got from this link

http://www.ncbi.nlm.nih.gov/pubmed/17410291

Several extrahepatic manifestations have been reported in the natural history of hepatitis C virus infection (HCV). Up to 40-74% of patients infected with HCV might develop at least one extrahepatic manifestation during the course of their disease. Mixed Cryoglobulinemia (MC) is the most known and studied syndrome associated with HCV infection. It is a systemic vasculitis that may involve the skin, kidney and nervous system. A frequent reported association is that between HCV infection and non-Hodgkin lymphoma. The cryoglobulinemia may be the intermediary disorder, in fact some persistent forms of cyoglobulinemia can switch over to a more aggressive haematologic disorder. As compared to cutaneous vasculitis described in MC, HCV infection has been associated with dermatological disorders such as porphyria cutanea tarda and lichen planus. Thyroid disease (usually hypothyroidism) is commonly seen in people with HCV. Up to 25% have thyroid antibodies. Several studies described a correlation between HCV and lympho-cytic sialoadenitis, similar to sialoadenitis associated with idiopathic Sjögren syndrome, but we can define as "pseudo- Sjögren syndrome" the one associated with HCV infection, because it shows several differences in the idiopathic form. In the course of chronic HCV infection, a common obser-vation are rheumatological symptoms such as polyarthritis. The clinical pattern of joint involvement in the course of HCV infection varies from a rheumatoid arthritis-like form (very rare), to a non erosive oligoarthritis involving the large-sized and middle joints.


Just wanting to help you make an informed decision

Best of luck and have a happy and healthy new year
Lynn

[Thereistomorroe]

Thank you Lynn! No misunderstanding here about having a relationship...It is very delicate, complex and personal decision on how to handle this issue. For me, I choose not to have one until I'm cured.
You brought up an excellent point with menopause impact. I read about it too, but completely forgot to consider. Seems that an earlier tratment is better as SVR rates are higher and also for the reasons others laid out earlier. Thank you all!!
At this point, I'm getting stronger in my decision to treat this year. As soon as my insurance approves the medicine prescribed of course. I'm so very bitter about all the issues surrounding the affordability of the new drugs. Hopefuly, my doctor will be able to overturn the initial denial.
Wish you all happy and healthy new year!!! 

[Coach Mike]

Hi T,

You can get the sof/dac with the information on the above link for $1400.

Many people there report major improvements across the board days into treatment.

Coach Mike


https://fixhepc.com/redemption-imagine-freedom-from-hepatitis-c

[greenpoint]

Hello. Your concern is validated and it is nerve wracking to have to make such big decisions..treatment vs no treatment.  I have had Hep c for over 25 years and did not take any treatments because I did not like to sound of the side effects..hair falling out, depression, anxiety, etc. so I waited and waited. I am glad I did because now that Harvoni is on the market, it seems to have an excellent success rate. Although it is new and no one knows what the effects will be down the line, cure rate is very good to excellent.

I have been taking Harvoni now for 30 days and began my second course (4 weeks) ; side effects are very slim almost not there at all. In the beginning I felt a little wierd = dizzy was my main complaint; but then again, I felt dizzy a lot prior to the medication so I can't blame it on Harvoni. Now, 4 weeks into the Harvoni, I am experiencing a little more fatigue and slight headache but nothing I can't live with. I will find out if I my count came down in 2 weeks when I go for the followup. Basically, I feel really good...knowing I am taking control of my life and not being afraid any longer...I hope this helps.

[dragonslayer]

Hi Thereistomorroe,

It would take 3 pages for me to write about the quality of life improvements I've received since being cured.

It is important to note that the vast majority of those being treated, complete a 12 week course of treatment and the HCV shadow is behind them. They don't report, they don't frequent HCV forums - they just get on with their new, improved life.

Although there are some who have reported side effects, the vast number don't experience any.

Moreover, there are no studies that suggest that the new HCV treatments lead to other aliments - unless improved quality of life is considered an aliment.

It is alsoworthy to note that the majority of those being treated are in their 50's, with all the associative issues that go along with growing old.

Many have been infected for decades and have had HCV symptoms/side effects that masked the pangs of aging. That little back ache was minor compared to the systemic issues that HCV wrought.

Once cured, and the HCV side effects dissipate, the aches and pangs of aging are more evident. Folks start feeling for the first time in decades. They start living.

Unfortunately, some ascribe every ache, pain or upset stomach to the recent HCV treatment. They make it a scapegoat for everything. When, in fact, they are just noticing things that have always been there; but were masked by the Hep-C infection and residuals.

My advice is to get treated and start living!

Best wishes, Mike

THIS!!!!  In Spades!

[Coach Mike]

Hi All,

I was just informed Twinvir can now be shipped into the U.S. from a trusted source for $1000.
Coach Mike

[FutureThinker]

Hi T, I'm in a somewhat similar situation in trying to figure out "how hard to fight" to get treatment approved.  We are making this decision in a very exciting time for HCV, new info is almost coming out daily right now, lots to read, more data coming in on Harvoni, RAVs, etc., etc. And now the new Gilead drug (SOF/VEL) may be available for all GT in the near future....... an awful lot to think about! Glad you found this forum. I was diagnosed 4 years ago and chose to wait, and when Harvoni came out I was psychologically ready to take it and get cured, and then my insurance denied it, twice! So, you may want to consider that it may take awhile to get approval for this.  I am hopeful that all the focus that's been put on Gilead's profit margin may make them handle SOF/VEL a little differently than Harvoni. Guess we'll see. FT

[Coach Mike]

I'm covering some"old" ground here, but I was denied coverage for three separate treatments by my insurance company. The first two, I appealed to what I thought was the final level. The third I took to the 4th level-the independent external review guaranteed under the Affordable Care Act. I prevailed and got my medicine. That took 9 months from the time the medicine was prescribed until I took my first pill. Most people give up before then. The paperwork is intentionally vague and hard to negotiate. I think most people who have the time and skills needed to nail this process can be approved, but that is only my perception.
I also feel that it will take government intervention or market pressure to force Gilead to substantially lower its prices. Both of those elements were factors in the recent agreement struck in Australia.
The good news is people can get affordable medicine delivered to their doorstep far easier and quicker, less than a week, than going through the long appeal process that holds no guarantee of success.
Gilead will continue to charge their exhorbitant price in the U.S. until it is in their best financial interest to lower it.
They could cut their prices in half and it would still be 40 times higher than the generics.
Coach Mike

[greenpoint]

 Hi All, It is with great pleasure that I come here today. I found out last night hep c is no longer detected in my blood. I have been on Harvoni for 5 weeks and have 7 more to go but my bloodwork came back and I am now free of Hep C. I want to encourage anyone with this virus to use their better judgement, and if waiting seems the right thing to do, then that is what needs to be done. Who knows their body better then ourselves? 

I would encourage anyone with the strain of Hep C that is curable to keep trying to get on Harvoni. As a few have said, it takes a while to get approval but it is worth the effort to try.  I will keep posting as my treatment continues and then ends and how I am doing,blood tests, etc.  In the meantime, I wish you all good health, confidence in yourselves and trust in your digestive disease Doctor.

[Thereistomorroe]

Thank you all! It seems to me that sof+dak is a great option for GT 3. There is something new coming almost every month. Yes, there is now sof+vel and it might be better than sof+dak, but it is also very possible that sof+dak is actually a better option that is not being marketed because Gilead and Bristol did not want to work together. Who knows...While it seems, based on my current results, that I do have the luxury of time, at least for a while, I want to proceed with treatment and get rid of the virus. Hopefully, I will get the approval soon.
Coach Mike, I appreciate all suggestions you have and share your feelings regarding the current situation with the access to medication. I'm aware of those generic options and I follow them closely. They are for now my plan B, and knowing that there is a plan B keeps me calm while I'm waiting for approval. That being said, I do not plan to wait for it a year or so .

[Coach Mike]

Options are good.
Now we have them.
CM

[FutureThinker]

Coach Mike, appreciate all your comments and info.  After paying for insurance all these years, it would be nice to have them finally pay for a treatment I truly need, so I'd like to go that route first before going the generic route.  But it is great to have this as an option!  FT

[Coach Mike]

Hey,
I feel the same way and did the same thing. I fought my insurance company, never gave up, bought the generics as soon as I knew they were real and then got approved by my insurance. So, I got the satifaction of taking charge of my own health AND forcing, yes forcing, the insurance company to do their job and cover the cost of Harvoni. I was really angry and frustrated by my insurer, but my anger should have been directed soley at Gilead and the government that allows them to ransom peoples' lives. It is simply wrong. Gilead has recouped its investment many times over. If insurers were forced to cover every HCV claim at today's cost, our premiums would skyrocket.
If I had to do it all over again, Knowing what I know now, I would simply buy the generic and be done with it.
The insurance companies are businesses. They can't lose money and stay solvent. Someone has to pay and that will be reflected in the premiums they charge.
Good luck!
CM

[FutureThinker]

Thanks and you make very valid points. I agree completely, our insurance industry here in the US is NOT about us at all, but all about their profits.  It's disgusting, really. I just read the post re: United Health Care changing their fibrosis requirements so now will go check my insurance's website to see if there's anything re: the same.  If there is, then I will have to decide which drug to fight for -- Harvoni or Daklinza.  Still leaning towards the Harvoni due to more data on it, but my doc just recommended the Daklinza as one my ins. may cover.  Wouldn't it be nice if they would cover both?? I hope that day is coming, too many people need to get treatment.

I will be in touch! FT

[Coach Mike]

Led or dac....?
Both very good. Dac is cheaper, led has more data results. My user name on fixhepc is mgalbrai. My signature has contact info if you ever need it.
CM

[Thereistomorroe]

Dear all, I should receive meds this weekend and I plan to start immediately. Thank you for all your responses and for sharing your experience with me. You helped me a lot in making this decision.
I will start a new tread and share my experience with the hope that it will help someone else.
My medication was approved by insurance. It took about 2 months and a lot of effort, it should not be that way. What kept me sane during the process was the fact that there are other options now.

[Else]

Congratulations!!!  I'll keep my eyes open for your new thread. 

[greenpoint]

  Hi Everyone. I just wanted to update you on my situation. I went for the second blood test after taking Harvoni for 8 weeks. I do not have the results yet but I will in a few days. 

After taking Harvoni for 4 weeks, my first blood test came back Hep C undetected but with a count of 15 still lingering. I had a count of 9,700,000 so I am pleased with the result. I wanted it to be zero of course so I am  optimistic that it will be zero the next time. Fingers crossed. Not sure what it means when there is still a count if anyone has had this experience I would appreciate any feedback. Thanks.

Otherwise, I've been watching what I eat, drinking more water and I have lost 7 lbs and feel more energetic overall.  I did have very strong dreams weeks 3-6 but I think they are calming down now. A few slight headaches but nothing warranting over the counter Tylenol, etc. I do feel a little "down" on occasion. Its a different down though...more a reflective and humbling down. Keeping busy with work and friends has made it most tolerable.

So, what I hope to bring here is support because for me, walking around with Hep C made put me in a mode of "infected and beating it", and thought I had to live with it. Not sure where Harvoni or the other medications will take us down the road, as it is a new drug, but maybe, just maybe, they are onto something. 

If so, I wish anyone that has Hep C be able to find a way to live the best possible life, whether it is natural or through medicine. At the end of the day, its "who" we are, not what little buggers we picked up along the way, that determine how we live our lives and to what capacity.

Best of luck to all!

[greenpoint]

  Congratulations Thereismore...I remember how happy I was when I was approved. Good luck. Keep in touch and stay positive! You are on your way!!!!!!

[gnatcatcher]

greenpoint, the 15 may refer to the sensitivity of the test: that if a person has fewer than 15, the test can only detect them but not count them. If your lab results say you are undetected, then the test not only couldn't count any, it couldn't detect any. The exact wording differs from lab to lab, and some labs (like Quest Diagnostics) refer you to their web site for a fuller explanation.

Just so you know, there are people on these forums who were still detected at the end of treatment and even later but they were undetected 12 weeks after treatment. The test that counts is the one taken 12 weeks after the end of treatment: as long as the HCV is undetected then, the person is considered cured.

When you get your 8-week results, ask your doctor to explain exactly what it means. Best of luck.

Gnatty

[greenpoint]

Thank you so much for that! I will ask my doctor to explain  a little better as well.

[Coach Mike]

Yes Green,
There is a difference the way some labs report, but, whether you were "unmeasurable" (<15) or "undetected" doesn't really mean anything at the 4 week mark other than the medicine is really working for you!
Your 8 week test will almost surely say "negative"!
Coach Mike

[Lynn K]

I have to agree with coach Mike on treatment testing results means little

The only test that matters is the 12 week post treatment test the SVR12 test.

For reference this is what my results say:

Narrative

7-28 S/O LABCORP, NC 27215 (HCVQNT)

Component Results

Component                  Your Value                        Standard Range
HCV RNA RT-PCR, QT    See Below IU/mL                 See Notes IU/mL

HCV Not Detected

HCV QNT TEST INFO          See Below              See Notes

The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL".


I totally get that it is great to see not detected on treatment so congrats for that now onward to kicking that dragons butt permanently!

 

[Mr. Bob]

I would just do Solvaldi............ the Harvoni is to toxic..... lots of people having   nasty side effects after treatment........... serious ones..... not sure I would do it again............. having memory and brain problems, fatigue, ringing in ears,  dizziness..........,

[Lynn K]

Sovaldi cannot be used alone it must be used with ribavirin. Sovaldi with Ribavirin is significantly less effective for genotype 1a than Harvoni.

Sovaldi alone is not a treatment regimen for any genotype in fact Sovaldi for genotypes 1 & 4 Sovaldi needs to be taken with ribavirin and interferon.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

Harvoni is 2 drugs combined it contains Sovaldi & Ledipasvir so Sovaldi is in Harvoni.

Most people do not experience significant side effects although sadly yes some people do seem to have problems while taking but in most cases it has yet to be determined that Harvoni is the cause.

The only significant side effect that has been determined is for those taking amiodarone especially if also taking beta blockers and have pre-existing cardiac conditions.

I am sorry for you continuing health problems Mr Bob. Have you reported them to the FDA and or Giliead? The contact info is on your prescribing information sheet. They do want this information that was how they determined the issues with amiodarone.

If you dont have the info here it is from the prescribing information sheet for Harvoni.

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Harvoni cured my 37 years of hep c where 3 rounds on interferon and 12 weeks of sovaldi and olysio did not. Were it not for Harvoni with my having cirrhosis for 8 years now I am not sure how much longer I would have lived had I not been cured.

[Coach Mike]

Hi,
I never experienced any side effects, other than a dull headache, during or after and tx. Most of the people I am aware of report the same. Lynn is right on all points.
I was worried during tx that the drug wasn't working, because I couldn't tell I was taking anything.
CM

[Baxter]

Hi

I didn't mean to imply you couldn't have a relationship with hep c but for me it was always on my mind when I was seaking a partner. Hi nice to meet you my name is Lynn and I have hep c and cirrhosis. Great icebreaker right?

Yeah, in my single days that was always an awkward subject to handle. I tried to find a balance between making sure they knew before they formed too strong an attachment, and not telling them halfway through our first meal together. The woman I wound up marrying knew before we even met, because she'd seen me writing about it online. So that solved that one, the one time that it really mattered the most!

In all my years of singlehood, though, it only scared one potential partner away, and the truth is it was a blessing. She turned out to be a bit of a nutcase anyway. But other than her, every other woman I dated was very understanding and just accepted that it was something we were both going to have to keep in mind and work around. No sharing needles, etc. :-)