Author Topic: Just started treatment, new to the group and optimistic! (Read 12891 times)

moz1959mel · « **on:** October 29, 2015, 10:27:41 pm »

Hi all,
I am a 34yo woman and I just started Sovaldi 400mg, Ribavirin 1200mg for the 12 week course. I was diagnosed in 2007 and I am sure I contracted HCV through drug use in my early teens as most of my friends have it as well. I have been taking care of myself for a long time, always used Milk Thistle, vegan diet, exercise, no drinking, etc. I have remained very healthy with a recent Fibroscan stating F0/F1 very mild fibrosis. My ALT and AST levels have dropped in half in the last year which I mostly attribute to being far more active and losing some weight. I was absolutely shocked to actually be approved for the medication through my insurance as was my GI doctor. He said usually they don't approve it unless you are much sicker but I suppose I have luck on my side

Two days on treatment so far and the only side effect I have noticed is I burp A LOT after taking the ribavirin. I have my fingers crossed that this is the only effect I will have lol. I am a single mom to an amazing toddler and I know if I can be cured of this, I will be around for her for a very long time or at least, that is my dream <3 I wish you all the best of luck and am happy to meet so many others going through what I am as well. Stay strong and think positive; the end is always in sight and we will be much healthier for it! *love and light*

Infected: 1998
Diagnosed: 2005
Treatment: Naive
Began Sovaldi + ribavirin (1200 mgs) on 10/28/15
Fibroscan: F0/F1 10/01/2015
GT: 2
VL: 6,500,000
AST: 19
ALT: 27

KimInTheForest · « **Reply #1 on:** October 29, 2015, 11:41:22 pm »

Welcome to the forums moz1959mel! And fantastic that you were able to get approved for treatment so easily. You've got the right attitude about staying strong and thinking positive.

all the best,
kim

BillT · « **Reply #2 on:** October 30, 2015, 06:34:30 am »

Hi Moz and welcome to the club,
You're going to do great on this and your numbers look amazing.If you didn't have a VL you'd be in better shape than your doctors.

moz1959mel · « **Reply #3 on:** October 30, 2015, 07:58:04 am »

Thank you so much

So long as we are all rooting for each other, we ALL have a good chance at success!

I just had my yearly complete physical on the 9th (October) and let me tell you, my ALT/AST were both in the 40's this time last year so these numbers astounded me as well. My family doctor actually told me that unless I had given her the information about my HepC status, she wouldn't think I have it

I just need to keep getting those numbers down and truly have hope that the Sovaldi will do this for me. I have been waiting almost 10 years for something like this. I watched my sister go through interferon/riba treatment about 5 years ago and it was horrific. I have always worked full time or more and the side effects she had, I didn't see that as a possibility. I stayed on top of the research and followed everything I could in medicine and now the day is finally here! I remember back in 09' when Merck came out with Incivek and all I thought was "hey, we might have a cure soon".... 5 years later and I hope we do. I have always felt so bad for the people that contracted this through transfusions and such but I know I got because I was irresponsible so it was hard to feel too bad for myself. I did always think though that people like me shouldn't be punished for the rest of their lives for mistakes they made as kids and big pharma is finally giving me a chance to let go of my past and only look to the future. Good luck to us all and hopefully one day we can rid the world of this awful virus once and for all (I wouldn't be surprised if we see a vaccine in the next decade) *love and light*

BillT · « **Reply #4 on:** October 30, 2015, 11:22:41 am »

Hi Moz,
You're numbers really are great.Congratulations.I went through the interferon treatment in 2004 and it really did destroy a lot of people.My doctor said it was only a 30% success rate.I never thought we'd see a cure in my lifetime but these drugs are as close to perfect as we could have hoped considering how many people are getting SVR.One thing I keep saying is that how you got it doesn't matter,getting cured does.A lot of folks got it before anyone even knew about it.I got vaccinated for A and B.The A took but they're having to do the B again.I take that last shot in January as well as finish this treatment.I sick and tired of doctors prodding,poking,bleeding,and just generally abusing me.

JAF · « **Reply #5 on:** October 30, 2015, 11:53:07 am »

Hi Moz. Welcome. I just started week 3 of the same treatment yesterday. So far no major side effects except fatigue, some heart palpitations and an occasional headache. We have pretty much the same history except I contracted it 20 years before you so I was already showing some symptoms pre-treatment. The past few years I was experiencing internal shaking and loss of appetite. Between 2013 and 2014 I lost 40 pounds. By day 3 of treatment that stopped. I'm calmer and my appetite is back with a vengeance. Last week I finally saw the scale go up 4 lbs. These are powerful drugs and you are lucky to be starting them 20 years into the virus as opposed to 40. Keep that positive attitude and I believe you will be fine. Best of luck. I'm fairly new to the forum and treatment, however, there are many here with great advice.

Rosie13 · « **Reply #6 on:** October 30, 2015, 05:03:07 pm »

Hi Moz,Jaf, & BillT! You guys sound like you are ready to put this nasty disease away for good.The forum has been so incredible during my treatment...I took my last pill2nd bottle of Harvoni today & month 3 is been fought between my Dr. & Insurance co. right now.Because my viral load was low they are trying to cut treatment to 8 weeks but we are pushing for that 98% cure that 12 wks brings.they elevated my appeals to a peer review so something will happen today. I picture the people who decide appeals as very sad Nazi's.Who do they think they are questioning a doctors prescription?If a relapse occurs it will most likely be after the new year when the deductibles will be in play again!.I feel great & positive about the next stage of my life...no more regrets.all the best to you in your journeys.

BillT · « **Reply #7 on:** October 30, 2015, 05:14:11 pm »

Hi Rosie,
I would fight the insurance company to hell and back on that one.It's low so the insurance company decides you don't need it?How can they approve it and then override a doctor?Someone is nuts.Keep fighting them and don't stop.I wish you all the best in this and let us know what happens.

Philadelphia · « **Reply #8 on:** October 30, 2015, 05:22:19 pm »

All the best for a side effect-free treatment and a cure

MaryC · « **Reply #9 on:** October 30, 2015, 06:59:02 pm »

Welcome to the HCV cure train Moz,
Your positive attitude and healthy lifestyle will get you thru treatment! I love seeing so many people getting approved for these valuable new meds.

Rozie13...I hope you are successful in getting your insurance provider to approve for the full 12 weeks of treatment with the peer review today. Keeping fingers crossed.

Mary

JAF · « **Reply #10 on:** October 30, 2015, 09:13:28 pm »

Rosie13. I would fight for that last month of meds. We've gone through too much to have these insurance companies turn us away. I understand these pills are expensive but still cheaper in the long run if treated early on. Good luck and let us know what happens.

Rosie13 · « **Reply #11 on:** October 31, 2015, 12:17:05 am »

Thanks to all for giving me some uplifting comments.sometimes we can move the needle with persistence.that is what happened today.I guess I had that one pill left & they had draged there asses all month with tedious requests for information they already had...like my genotype.....then another drug test request? Are you kidding in the middle of treatment?Then denying because I only had fibrosis 3 not 4? Pathetic immoral beasts!My nurse said call them & push for supervisor to complain that appeals dept. never return calls.Even Gilliad reached out to them....they are willing to pay $16,000 towards this month.Patient Access will cover the rest if fla blue pays something...or my grants are worth nothing.I am calm now that it will work out by Monday.Dr.says I can return to Harvoni within a few days without problems.

moz1959mel · « **Reply #12 on:** October 31, 2015, 10:16:21 am »

Quote from: Rosie13 on October 30, 2015, 05:03:07 pm

Hi Moz,Jaf, & BillT! You guys sound like you are ready to put this nasty disease away for good.The forum has been so incredible during my treatment...I took my last pill2nd bottle of Harvoni today & month 3 is been fought between my Dr. & Insurance co. right now.Because my viral load was low they are trying to cut treatment to 8 weeks but we are pushing for that 98% cure that 12 wks brings.they elevated my appeals to a peer review so something will happen today. I picture the people who decide appeals as very sad Nazi's.Who do they think they are questioning a doctors prescription?If a relapse occurs it will most likely be after the new year when the deductibles will be in play again!.I feel great & positive about the next stage of my life...no more regrets.all the best to you in your journeys.

Hi Rosie,
This is my biggest fear as well actually. I was approved by insurance for 6 weeks of treatment then will have a viral load check. I was told so long as the viral load is dropping, they will continue to pay for the final 6 weeks but I am worried if the virus is undetectable they will just say "nah, you're cured, we're not paying".... I wish I had all 3 months bottles with me right now

It is so scary to think about being cured and then relapsing all because of the almighty dollar. These are people lives hanging in the balance and I feel like we are just numbers to them... It is such a shame. Plan B has been in the back of my mind ever since though... I have a friend in Mangalore who said myself and my daughter could fly to India to stay for several months and finish treatment there if needed. The hassle of this option is daunting but I will do whatever I have to to get this done! I wish you luck sweetie and I sure hope these providers don't screw us over <3

Rosie13 · « **Reply #13 on:** October 31, 2015, 02:10:35 pm »

Moz, I have never heard of 6 wks then check viral load for possible 6 more.is this Australia?What do you do while labs are being done?here it is 8 wks or 12 I got labs done @2 wks ,4 wks & next week will be after the 8.the 2 wk was eye opener from 192,000 to 24.undetected after 4 & hoping still undetected but it doesn't change we should all get 12 for tx naive patients.just waiting for Dr. To call me with good news but very hard to imagine going 3 months without worrying after only 8 tx.In Gods hands. Thanks for the lift !

JAF · « **Reply #14 on:** October 31, 2015, 03:46:17 pm »

Rosie and Moz, my heart breaks for you. On top of everything we have to go through with the virus and side effects of the treatment, the last thing we need is to stress over the insurance company's decision to approve or deny us treatment. I am so thankful that my approval went through for the first 4 weeks of meds. I never even considered the idea that they could stop treatment once someone had begun. Luckily for me when they called the doctor for the next four week approval, they somehow decided to send the remaining 8 weeks of meds. I won't be completely at ease until they arrive but I'm feeling blessed knowing they are being sent this coming week. It's so unfair that once someone makes the commitment to take this fight on, someone they never met can step in and take that option away. Please stay optimistic and keep that end goal in sight. Wishing you both an easy road to SVR12

ricpark · « **Reply #15 on:** October 31, 2015, 05:40:54 pm »

Moz
Your on Sovaldi not Harvoni plus 1200mg Ribavirin? Watch your blood levels, I went anemic on 1200mg and was reduced to 800mg. I did not know that Sovaldi by itself with Ribavirin was a approved treatment for Hep C. I am SVR12 and you will be too.
rich

JAF · « **Reply #16 on:** October 31, 2015, 08:19:56 pm »

Rich I'm also 3 1/2 weeks into Sovaldi and Ribavirin. The anemia is my biggest worry. How far into tx did they have to cut your riba dose? Obviously it still worked for you so your post made me feel better. Congrats on SVR12

moz1959mel · « **Reply #17 on:** October 31, 2015, 10:38:21 pm »

Quote from: Rosie13 on October 31, 2015, 02:10:35 pm

Moz, I have never heard of 6 wks then check viral load for possible 6 more.is this Australia?What do you do while labs are being done?here it is 8 wks or 12 I got labs done @2 wks ,4 wks & next week will be after the 8.the 2 wk was eye opener from 192,000 to 24.undetected after 4 & hoping still undetected but it doesn't change we should all get 12 for tx naive patients.just waiting for Dr. To call me with good news but very hard to imagine going 3 months without worrying after only 8 tx.In Gods hands. Thanks for the lift !

Hi Rosie,
I am in the US and of course the doctor prescribed the full 12 week course it is the insurance company that wants the viral load count at 6 weeks before they agree to pay the final 6 weeks. I honestly can't believe they covered it to begin with but hopefully it will come back good and they will cover the rest because i can't pay for it by myself, that's for sure!

moz1959mel · « **Reply #18 on:** October 31, 2015, 10:44:31 pm »

Quote from: ricpark on October 31, 2015, 05:40:54 pm

Moz
Your on Sovaldi not Harvoni plus 1200mg Ribavirin? Watch your blood levels, I went anemic on 1200mg and was reduced to 800mg. I did not know that Sovaldi by itself with Ribavirin was a approved treatment for Hep C. I am SVR12 and you will be too.
rich

Hi Rich,
I read a lot about the anemia as well so the day I started the Sovaldi I added 65mg of Iron to my multi vitamin regimen. I have never been anemic except when I was pregnant and have actually had issues with my iron being too high before (black, tarry stools, severe abdominal pain) so I know what to look out for. Hopefully beating the anemia to the punch

-Melissa

ricpark · « **Reply #19 on:** October 31, 2015, 11:50:18 pm »

Don't add iron it won't help, it's the ribavirin. Iron is bad for your liver, talk to your doctor, mine told me not to take anything for the anemia he will manage it with dosage levels.

KimInTheForest · « **Reply #20 on:** November 01, 2015, 12:13:13 am »

Quote from: moz1959mel on October 31, 2015, 10:44:31 pm

Hi Rich,
I read a lot about the anemia as well so the day I started the Sovaldi I added 65mg of Iron to my multi vitamin regimen. I have never been anemic except when I was pregnant and have actually had issues with my iron being too high before (black, tarry stools, severe abdominal pain) so I know what to look out for. Hopefully beating the anemia to the punch

-Melissa

Hi Melissa. Rich is right,. The iron supplements won't help you with the anemia caused by the ribavirin, and it could be damaging, possibly putting you into an iron overload position.

Ribavirin induces hemolytic anemia. It does not have anything to do with your iron levels. This is not iron-deficient anemia. The ribavirin is literally blowing up your red blood cells faster than your bone marrow can produce new ones. And without enough red blood cells to transport your hemoglobin, you will become anemic.

Now if you happen to actually be iron deficient for other reasons (as I turned out to be), then an iron supplement will help you. But you need a blood test for serum ferritin to determine that.

best,
kim

moz1959mel · « **Reply #21 on:** November 01, 2015, 08:49:10 am »

Thank you Kim and Rick! I won't take it anymore (only took it twice). I am supposed to be getting the bloodwork done in a week so we shall see then. TBH, I feel totally fine so far. Literally no side effects so really hoping it stays that way

Rosie13 · « **Reply #22 on:** November 02, 2015, 01:45:00 pm »

Hi Rick & Kim! Great info for Moz. We learn stuff here that should be covered by our caretakers.but unless we know what to ask ...can be confusing..My update is that my peer review was denied the final 4 wks of Harvoni & my grants will not work w\out insurance putting in something.I think the fix was in on Friday.can't get any info from Mayo because someone has to read the fax before calling me with details.I'd be lying if I said I was fine with it but must stay the course & do labs now & start waiting for 8 wk results.

KimInTheForest · « **Reply #23 on:** November 02, 2015, 02:13:26 pm »

Quote from: Rosie13 on November 02, 2015, 01:45:00 pm

Hi Rick & Kim! Great info for Moz. We learn stuff here that should be covered by our caretakers.but unless we know what to ask ...can be confusing..My update is that my peer review was denied the final 4 wks of Harvoni & my grants will not work w\out insurance putting in something.I think the fix was in on Friday.can't get any info from Mayo because someone has to read the fax before calling me with details.I'd be lying if I said I was fine with it but must stay the course & do labs now & start waiting for 8 wk results.

Hi Rosie. Thanks for updating us on your sitch. very sorry to hear your last 4 weeks of Harvoni have been denied. Even without that, you have the odds on your side! as a GT 1b with very low viral load (and no prior tx?), it is quite likely that 8 weeks has cured you.

Fingers crossed for you!

kim

Rosie13 · « **Reply #24 on:** November 02, 2015, 03:00:19 pm »

Thanks for the shout out Kim,you are right about my odds.I just was praying for 2% chance of 12 wks tx.my Dr said viral load jumps around & her appeal was my f2\3 status.Grateful for the 8 & moving forward ...hope you are well today!

Heptone · « **Reply #25 on:** November 02, 2015, 06:11:23 pm »

Also new to the forum- - -

Blood work has been in for 3 weeks- - Waiting for Medicaid to give me the green light. http://www.medscape.com/viewarticle/847274
Wondering due to the 1000$ a pill (more or less) treatment ,,if Medicaid has denied Harvoni or sovaldi treatment to anyone.
Although anxious, Id be a lot more anxious if I had to go with a different treatment , just because it was more cost effective.
Apparently coverage varies from state to state ,,at least the requirements to be a candidate do...
whadda think ??

JAF · « **Reply #26 on:** November 02, 2015, 06:57:37 pm »

Heptone. I'm also on Medicaid in NY and I was approved for Sovaldi + Ribavirin a week after my doctor submitted it. But like you said, each state is different and they look at your lab work, etc. The more I read here the more blessed I feel for having my tx progress so quickly. Some of our members with more experience have lots of info on appealing insurance denials or going straight to Gilead or other manufacturers. Good luck and do not give up!

TexasC+ · « **Reply #27 on:** November 03, 2015, 06:54:02 am »

Treatments are there and there are more of them then there ever was. Even for geno 3.
Glad your getting started on getting yours.

Forums Index

Welcome

Author Topic: Just started treatment, new to the group and optimistic! (Read 12891 times)