Author Topic: Got First VL Today (Read 23689 times)

ugot2bkidding · « **on:** January 12, 2015, 11:35:26 pm »

My viral load came back at 5.5 million and my PCP has referred me to a GI.
So glad God is in my corner.

Lynn K · « **Reply #1 on:** January 13, 2015, 12:30:10 am »

First question for your doctor what is my genotype

Next question what medication is recommended and when can I start?

Good luck

ugot2bkidding · « **Reply #2 on:** January 13, 2015, 12:35:46 am »

I've read that riba and interferon have horrible side effects. I'm also curious to find out how much damage there's been to my liver.

Lynn K · « **Reply #3 on:** January 13, 2015, 03:39:12 am »

Well that depends on who you ask I did Interferon and Riba 2 times and previously interferon shots 3 times a week which was the first treatment that came out I did that in maybe 1993 or so.

All I had were the flu like symptoms they mention felt like a was just getting over the flu for 6 months achy and tired and the riba dropped my hemoglobin so I was even more tired. I worked full time thought out my treatments but no it was not a lot of fun.

So to find out how much damage to your liver you need either a liver biopsy or a fibroscan if you can get one. Fibroscan is not invasive and no big deal to do. But a liver biopsy has been considered the gold standard to determine liver fibrosis status.

ugot2bkidding · « **Reply #4 on:** January 13, 2015, 07:07:40 am »

Thanks for the info. Given the cost of the new, but successful treatments, are people generally experiencing resistance from the insurance companies to approve treatment? It appears that drugs like Harvoni are having near 100% success rates but the cost of the drug makes it hard to get approved for.

yag1064 · « **Reply #5 on:** January 13, 2015, 05:19:27 pm »

The cost of the new treatments are high. I was denied treatment two times. I had peg Interferon Ribaviren and Solvaldi. The price for 84 tables of just the Solvaldi was $84,000. There is a way to get the treatment. First there is the appeal system within your medical insurance. Also each manufacturer of the drug have assistance programs. I contacted Gilead and they helped me with the appeal, and they told me that if that effort failed I could get the Solvaldi at a reduced cost or no cost. So don't worry about the cost. Above all don't hesitate to be proactive. No one see the situation as you do. Do whatever it takes to calm yourself so not to get overwhelmed. You should be ready for the battle. You will probably be misinformed along your path to getting rid of the virus. There are only a few other things that could help you along the way.
* Stay positive. The new medicines kill the virus. There are many who have walked in your shoes and have been liberated.
* Be kind to yourself. Take good care of yourself and those close to you.
* Be confident. Strength comes from within. Nurture that strength. You may need a large amount someday.
* There are many caring people in this space if you need to communicate or vent

Nice to have you with us.

ugot2bkidding · « **Reply #6 on:** January 14, 2015, 06:52:46 am »

Thank you for taking time to reply. I'm positive, focused, and ready to take on the challenge. I can do all things through Christ.

Long_Haul · « **Reply #7 on:** January 18, 2015, 11:21:33 am »

Welcome ugot2bkidding! As has been said there are many on here that will help both with facts and emotional support. We are here to listen and lend a shoulder if you need one.

One addition to the basics is to drink a lot of water. As you read through other posts you will note that this is key to keeping headaches and nausea at bay.

Best wishes and stay strong,

AL

SZTahoe · « **Reply #8 on:** September 24, 2015, 09:07:47 pm »

I am flight attendant who works 12-14 hours a day. for 3 days in a row. exhausting. Will I be able to work? I keep reading about insomnia,headaches, nausea,rashes. I really have to be on top of my game at work.I can easily get a medical leave and have savings to pay my bills. any thoughts? or advice?? help!!!

SZTahoe · « **Reply #9 on:** September 24, 2015, 09:11:03 pm »

I am flight attendant who works 12-14 hours a day. for 3 days in a row. exhausting. Will I be able to work? I keep reading about insomnia,headaches, nausea,rashes. I really have to be on top of my game at work.I can easily get a medical leave and have savings to pay my bills. any thoughts? or advice?? help!!!

KimInTheForest · « **Reply #10 on:** September 24, 2015, 09:18:21 pm »

Quote from: SZTahoe on September 24, 2015, 09:07:47 pm

I am flight attendant who works 12-14 hours a day. for 3 days in a row. exhausting. Will I be able to work? I keep reading about insomnia,headaches, nausea,rashes. I really have to be on top of my game at work.I can easily get a medical leave and have savings to pay my bills. any thoughts? or advice?? help!!!

Hi SZTahoe, and welcome to the forums!

Do you know what treatment you will be on? Have you gotten that far? If ribavirin is involved, it can certainly make things more difficult in terms of energy level (it induces anemia) and some other issues (mood, attitude, "riba rage"). Yet many people on these forums have worked through 12 weeks or even 24 weeks of treatment involving ribavirin.

If ribavirin is not involved, then where those other side effects are concerned, it seems to be a really individual thing. I was on 12 weeks of harvoni+ribavirin and never once experienced headache or nausea. The rash for me was very minor and localized on my chest, was not terribly itchy, and certainly would not have kept me from working. But really, it is all quite individual and so it is hard to predict what side effects anyone may have.

On Harvoni for example, some people find it elevating to the point of insomnia, others find it fatigue-producing. Some people find it an appetite suppressant and lose weight on treatment, while others find it makes them hungry and they gain weight on treatment. It's all over the map.

Maybe someone else will have more useful advice. In some ways, however, the kindest thing to do for yourself would be to take a medical leave if you are in a position to do so - not necessarily because you will need it. But rather so you can focus fully on your healing, pamper yourself, reflect on the healing process. Because although it initially seems to all of us that healing is just about the eradication of the virus, most of us discover it is a much deeper experience.

best,
kim

beto · « **Reply #11 on:** September 25, 2015, 01:53:52 pm »

SZTahoe,

I am pushing 60, infected with HCV 40 years and nobody's sweetheart

. Anyway, I am in a job that requires me to travel quite a bit. I am on and of airplanes, light rail, taxi's and trains regularly and then ride around big city markets with a sales rep and I do all of the talking. Sometimes the job requires me to host late night dinners and I am pressured by superiors on a daily basis. I have 9 more harvoni pills to take. So, I have been traveling and working while on Harvoni...throw in cirrhosis symptoms. I also work out. I have a friend that started treatment while doing and 500 mile pilgrimage hike through Europe. She is in her 50's and also cirrhotic. She had great energy, or so she reports. That said, some folks have a rough time. I agree with Kim, argue for Harvoni no ribo.
Maybe take the 1st week off work (or two weeks) most of the symptoms occur early. You are going to be OK. Peace.

Lynn K · « **Reply #12 on:** September 25, 2015, 02:43:56 pm »

Just to chime in I did 24 weeks of Harvoni and I asked to add Ribavirin because of my treatment history. So I took Ribavirin for 15 weeks of those 24 weeks.

Not everyone gets anemia with Ribavirin but I did. It did make it a tougher go but still I worked full time took one college class did a quick trip for a week to Italy while treating. Also I have had cirrhosis for 8 years and I am 57.

So if your doctor feels you need Ribavirin I would say go for it but unless you have cirrhosis and are a multiple treatment failure like me that is not likely that your doctor would even suggest Ribavirin.

When I was just on Harvoni all I had was a couple of mild headaches which may or may not have been from Harvoni. Other that that at least for me Harvoni was a cake walk.

Best of luck to you
Blue skies and tailwinds
Lynn

MaryC · « **Reply #13 on:** September 25, 2015, 07:57:03 pm »

Welcome ugot2bkidding and SZTahoe,
I am fairly new to the forum, but wanted to let you know you have come to the right place. There is a wealth of information, knowledge and experience here. And the support is phenomenal.

The road to treatment and recovery can be arduous, but do not give up. Your GI doc will help guide you through this process and help determine the best course of treatment for you. Educating yourself helps you become an effective advocate in your care.

As others have mentioned, take care of yourself too! Don't let this virus stop you in your tracks!! Eat healthy and stay active! There will be set backs (likely denials), but stay strong and focused. Many people here have been successful in accessing treatment (myself included).

MaryC

TexasC+ · « **Reply #14 on:** October 10, 2015, 10:06:00 am »

On Ribaviron and sovaldi, finishing week 19. I work 10-15 hours a day. It's not easy but I love my job.
Side effects vary, plan to do well, be positive and stay informed on meds and options.
My insurance denied but that's not unusual. I picled a doctor who was known for being able to not only treat but do the paper work. I got my meds on my first appeal

beto · « **Reply #15 on:** October 10, 2015, 11:55:02 am »

TexasC+

You are a very strong person and an inspiration to all. Wonderful that you love your job. I may lose mine soon, though I have a love hate experience with it...so probably time to move on.

Overall the bottom line is, the newer drugs, even with ribo are generally much easier and for some a piece of cake. Then there are those that have difficult sides that are just so happy to be on meds that actually work 80 to 95% of the time, rendering the symptoms moot. I have said this before, the sides to me are a sign the meds are working. These are designer drugs that are very strategic and specific down to genotypes. Nice to know when we are uncomfortable with side affects that we stand a very good chance of cure. Of course, that does not take away the anxiety we all encounter awaiting our blood results. My next one is my first EOT and that one is a bit scary.

MaryC · « **Reply #16 on:** October 10, 2015, 12:54:33 pm »

Quote from: SZTahoe on September 24, 2015, 09:07:47 pm

I am flight attendant who works 12-14 hours a day. for 3 days in a row. exhausting. Will I be able to work? I keep reading about insomnia,headaches, nausea,rashes. I really have to be on top of my game at work.I can easily get a medical leave and have savings to pay my bills. any thoughts? or advice?? help!!!

I, too, was fearful I would need to take a leave from work during my treatment. I was able to avoid interferon-based treatment (per my insurance company's medical policy the first line of tx for GT 3 is peginterferon +riba + Sovaldi x 12 weeks). Fortunately my denial for Daklinza and Sovaldi was overturned on appeal and I am on tx day 24! I am able to work full time and run 4 days a week on this med combo. I even registered for a 10K trail run this coming weekend!

Quote from: beto on October 10, 2015, 11:55:02 am

TexasC+
I have said this before, the sides to me are a sign the meds are working. T

I hope my lack of sides doesn't mean my tx isn't working. I guess I will find out next week when I go for my first blood draw.

There is a light at the end of the tunnel for all of us!!

Mary

KimInTheForest · « **Reply #17 on:** October 10, 2015, 01:34:30 pm »

Quote from: MaryC on October 10, 2015, 12:54:33 pm

I, too, was fearful I would need to take a leave from work during my treatment. I was able to avoid interferon-based treatment (per my insurance company's medical policy the first line of tx for GT 3 is peginterferon +riba + Sovaldi x 12 weeks). Fortunately my denial for Daklinza and Sovaldi was overturned on appeal and I am on tx day 24! I am able to work full time and run 4 days a week on this med combo. I even registered for a 10K trail run this coming weekend!

Fantastic that you are able to do a 10K trail run on this Daklinza/Sovaldi combo, Mary! Good for you. Glad to hear the tx is going so well.

kim

beto · « **Reply #18 on:** October 10, 2015, 01:36:49 pm »

Maryc

Your lack of sides means the meds are super working.

Tongue n cheek aside, I was not suggesting that sides "were" a sign that meds were working...just staying positive. Truly, I am one of those with few sides. I too have been working out and energetic. I have had a few difficult things like some bouts of dizziness, but my energy has been over all good. There is a rapid virus die off with the meds. that might affect some and not others. I am just a guy with hep c that talks a bit too much. You are rocking this thing Mary. I cleared at 5 and 9 weeks and you will too. peace

MaryC · « **Reply #19 on:** October 11, 2015, 10:02:57 pm »

Quote from: KimInTheForest on October 10, 2015, 01:34:30 pm

Fantastic that you are able to do a 10K trail run on this Daklinza/Sovaldi combo, Mary! Good for you. Glad to hear the tx is going so well.

kim

Thanks Kim. I'm guessing I won't be running too fast, but will enjoy the adventure on the trails.

Quote from: beto on October 10, 2015, 01:36:49 pm

Maryc

Your lack of sides means the meds are super working.

Tongue n cheek aside, I was not suggesting that sides "were" a sign that meds were working...just staying positive. Truly, I am one of those with few sides. I too have been working out and energetic. I have had a few difficult things like some bouts of dizziness, but my energy has been over all good. There is a rapid virus die off with the meds. that might affect some and not others. I am just a guy with hep c that talks a bit too much. You are rocking this thing Mary. I cleared at 5 and 9 weeks and you will too. peace

Thanks Beto! I plan to follow in your footsteps.

Mary

El Dee · « **Reply #20 on:** October 14, 2015, 12:59:06 pm »

Just trying to sort out my profile....

My VL is 9 million

beto · « **Reply #21 on:** October 14, 2015, 01:26:24 pm »

Welcome El Dee,

Have not seen a post from you yet. You will get a lot of support here...a good bunch. I am assuming that you have not started treatment. Were you just recently diagnosed?

Geno type? Fibrosis score. Anyway. Just get sorted out. You will find a wealth of info here. Many folks have VL's in the millions. They are all over the place. I have has low VL but bad liver scores. The good news is that you can expect a cure and tons of support. Peace

Beto

El Dee · « **Reply #22 on:** October 14, 2015, 02:08:06 pm »

Beto.....I'm 1A....Antibody test in 2010...PCR last month...I was waiting on new treatment options...Treatment naive....Currently reading the "Side effects of Harvoni" and on page 19 of 27....Some dang long pages but I will read every post....Those are the only tests I've done...It's all outta pocket for me...

The good news is I have a bottle of Harvoni...I tried to get my Doc too prescribe 12 or 16 weeks...He prescribed 8...Upon hearing I'd been accepted into Wellpath he said he was concerned that 8 weeks wasn't enough...I've gotten this far and now my main objective is getting approval changed to 16 weeks...I would settle for 12 weeks...Just got that bottle of pills and still waiting on all that to sink in before calling Gilead..

Before pill 1 I will finish the side effects thread....I will finish things I've got going on and prepare for a restful treatment period...Sorting my diet and trying my best to remove anything unhealthful...I also vaporize nicotine with an electronic cigarette...I will also quit that before taking Harvoni...It may be OK but I want my chances of undetected to be as high as I can make them....

gnatcatcher · « **Reply #23 on:** October 14, 2015, 02:28:35 pm »

Welcome, El Dee. We share genotype 1a and VL of 9 million (although mine jumped around quite a bit). I recently finished 12 weeks of Harvoni. As you can see below, already at the 4 week point, my VL was undetected and my very high ALT and AST liver enzymes had returned to the normal range. Harvoni is amazing! It's good that your doctor is pushing to extend treatment from 8 weeks to 12, because that ups the odds of a cure slightly, but even on 8 weeks, your odds of a cure are very high. -Gnatty

beto · « **Reply #24 on:** October 14, 2015, 08:49:43 pm »

El Dee,

What Gatty said. Also, I would advise you to get your ducks in a row ...meaning, make sure you can get the full course with no gaps, before heading into that beautiful bottle of cure.

I would not worry about the side effects, most folks find it a breeze especially given those old meds Peg/ribo etc. If you have been reading all the "sides" stories than I guess you have a pretty good idea. Have fun reading...some of the posts are hysterical. But the great thing is how close you become with so many new friends that share your journey. I think my wife might be jealous I spend so much spare time yakking away with my hep homies.

Hope you get everything sorted out. 12 does the trick, but depending on a lot of things 8 can be all that is needed. I have seen reports of 2 weeks near UD even one 3 day near UD. Best to you.

El Dee · « **Reply #25 on:** October 14, 2015, 11:12:26 pm »

Gnatty...Beto...Thanks for the replies...I sincerely hope both of you remain undetected for life....

Just to clear it up I first suggested 12 weeks to my Doc....He filled out his part of my application and prescribed 8 weeks...Upon hearing I'd been accepted he said his only worry was that he hadn't prescribed 12 or 16 weeks....I'm no expert other than what I've learned on the thread...I'd be fairly confident at 12 weeks....16 weeks even better...I'm gonna work on that...

The side effects thread....I was scheduled to start a clinical trial at UNC Hospital...Interferon....They wouldn't agree it wouldn't be used...I didn't go...I began reading the thread when I received my application...I'd no idea what the sides were...A thread where the day to day lives of actual Harvoni patients are posted...Worth it's weight in gold...or Harvoni....I've learned what steps to take to hopefully breeze through treatment...What I've read there made me decide the nicotine must go...No one there vaporizes nicotine but what I read and knowing nicotine is a vaso constrictor....Well...Time for it to exit the building

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Author Topic: Got First VL Today (Read 23689 times)