Author Topic: Day four of Harvoni today.. (Read 19111 times)

Majorchas · « **on:** November 15, 2014, 07:56:18 am »

I started Harvoni this past Wed and have had no side effects whatsoever.
As the cold front passed through Texas last week I had a mild sinus headache which did not increase when I started treatment and which has now passed without asprin, advil etc..
It's probably the placebo effect but I feel better than I have in years, more energy for chores without needing to take a short break between tasks, and fewer "must nap for a few minutes" episodes in the afternoon.
No change in sleeplessness, I still wake a few times in the night but if anything, I'm getting back to sleep quicker after waking, and certainly not staying awake more than usual.
I seem to in a better mood as well, less depressed perhaps?
Lasty, I could swear my liver is getting smaller, the "football" in my stomach seems to be diminished slightly (probably too soon for a change but something is going on there..).
I take it at 3:30 in the afternoon on an empty stomach and for two reasons, one is that I want to be able to chew some tums before bedtime if a meal gives me stomach upset (have to wait at least 4 hours to ingest magnesium) and two, 3:30 is when UPS delivered the package from UnitedHC and I took the first dose as soon as I could get the package open and speed read the enclosed data sheet...

BattleTheBeast · « **Reply #1 on:** November 20, 2014, 08:48:10 am »

Hi Majorchas,

Congrats on your road to a cure! I hope it continues to stay side free and your weeks fly by with an Undetected along the way and at the end!

Stay strong!

~Mel~

Majorchas · « **Reply #2 on:** November 20, 2014, 09:07:51 am »

Day seven report is even better..my tummy is flatter, at least in terms of left to right side, liver is less swollen for sure and I don't feel like my abdomen is "crowded" after meals like before.
Concentration seems better, I can read longer without getting mentally tired out and (possible placebo effect warning} I just feel "younger"..if that's a useful descriptive.
I feel reluctant to brag about it, I just pray everybody gets approval ASAP.

BattleTheBeast · « **Reply #3 on:** November 20, 2014, 10:21:12 am »

Majorchas,

You are not bragging, you are sharing your experience, same as we all are. Some are doing better than others, some are waiting to get on the medications, some are SVR and some have to start all over again. It's a long brutal road and we appreciate learning all we can from each (I think that's what I have seen since I have been here).

Can you share a little bit about where your disease is at, your Genotype, do you have cirrhosis and what stage?

Thanks,

~Mel~

Majorchas · « **Reply #4 on:** November 20, 2014, 10:50:29 am »

1b, had it for more than 40 years from IV drug "experimenting" in the late 60's (known about it for 11 yrs) under 6 million viral load, some scarring (results from a fancy blood test) but level unknown as the test is yes/no not how much or how bad, I refused a biopsy and not eligible for MRI due to metal bits in eyeballs.
No alcohol for 13 years (not all that much before quitting), cut out junk food of all kinds and tried/try to eat real food as opposed to canned or frozen food.
Been on and off herbal supplements over the years sometimes I felt they were helping and sometimes I thought they made me feel worse..

rainbowray · « **Reply #5 on:** November 20, 2014, 10:57:57 am »

Majorchas,

In my humble opinion you have done good in your decisions. Asking the Doctor for a fibroscan won't hurt because it gives you a more pinpoint view of liver damage. It is good to have for a baseline now, and then compare in a year or so.
But the most important thing is you are ridding the virus to stop further damage.

Majorchas · « **Reply #6 on:** November 20, 2014, 11:05:43 am »

Asked for fibroscan but they don't have the machine, they only offer MRI and failing to qualify for that they did a special blood test...or sent the sample to Cali to a lab that could.

rainbowray · « **Reply #7 on:** November 20, 2014, 11:12:43 am »

I think more are on the way as Doctors become aware. I am fortunate, my hepatologist just received one in his office. A search online may show one near you and may be covered or not that expensive. I signed a form saying if insurance did not cover I would pay $200.00. I would have payed gladly, but it got covered.

Majorchas · « **Reply #8 on:** November 20, 2014, 12:40:09 pm »

I found one at the Liver Institute in San Antonio, called them and found out they would scan me but my GI said I would have to switch to them as my primary before they would do it so I let it slde.
Frankly, I waited 10 yrs to go to any doc (until Oct 10) and only did that to get a script for Harvoni.
My level of damage is moot at least in terms of taking Harvoni, the treatment is the same for a low level of damage as with a higher level of damage..I'm doing 12 weeks anyway.

gea · « **Reply #9 on:** November 20, 2014, 03:26:40 pm »

Hello all fellow Hep C patients! I am new to this site and as the previous post stated, today is "Day Four on Harvoni" for me as well. I am one of the very lucky ones. As near as can be deciphered, I was infected by a needle stick within the last few years, I work in the health field and wish I had thought each moment, taken care with each needle, and kept my head more than I evidently did.... but that's behind me now and Harvoni is flowing thru me! I am 1-A, very low viral load, but high inflammation of the liver. I have kept my active life style since diagnosis in June, 2013. And suffered no symptoms, other than always feeling as though I had been "punched" on the left side with tenderness and sensitivity. I have great insurance, that quickly approved me for Harvoni, in less than one week, and my doctor works with Giant Eagle Specialty Pharmacy where I have met some great people who send my pills Fed Ex, next day delivery. As I stated, day four and no adverse reactions. So here's my problem..... I feel almost as though I am experiencing "survivor's guilt". I read a great deal about this virus and what people experience with years of exposure, as well as how many are experiencing problems obtaining the medicine that will be their cure.... Anyone else out there feel as though the deck is stacked unfairly for many, and almost guilty if they seem to be in a better situation? This sucks! Happy for me, but really feeling for those not so lucky!

gea · « **Reply #10 on:** November 20, 2014, 03:29:06 pm »

REALLY? How could I write "left" side??? Of course you all are yelling.... RIGHT SIDE ! whoops I told you I was new here...

badbradley · « **Reply #11 on:** November 20, 2014, 06:25:27 pm »

Hi gea,
Welcome to the Forums! My experience getting treatment was fairly effortless on my part. I had been reading the posts here and was shocked to find all of this Grief most people were experiencing trying to get this medication. I was much impressed by the persistence shown by a lot of you here. I was a little overdue for an ultrasound so I figured I should probably have a look. CT scan 2 yrs earlier - liver looked fine, nothing noted. US IMPRESSION: "Early Hepatic Steatosis". Results call received at 3 PM Aug 6. At 2 PM Aug 7, I received a recorded message from Express Scripts stating that I was approved for Sovaldi/Olysio. Received a call from the pharmacy on Aug 13th stating that my Meds were there and could be picked up anytime. Brought along the coupon info. along with my co-pay cash which was $25 for Olysio, $5 for Sovaldi. Had Meds in hand in less than a week. I couldn't believe how quickly things progressed. But I have this guilty feeling inside every time I see someone new to the Forum who is desperately needing treatment and has to deal with the denial, appeal, denial, appeal, denial, appeal - because they're just not quite in bad enough shape. It appalls me! One other thing that has been bothering me for a long time is that my hep c virus came aboard via shared needles. It was a brief period in my life. I can count on one hand the times I used. I have this underlying guilt that I carry around - that if it weren't for people like me, who decided to inject drugs, probably people who received blood transfusions and nurses who got needle sticks wouldn't be getting Hep c in the first place. I am very sorry for the choices I made. What's more is that I'm not in bad shape - not as bad as a lot of people who can't get a break with these ins. coms. I also take my hat off to all of you who had to endure interferon/ribavirin,etc. etc. I will probably SVR 12 with no problems and feel guilty about that. There's a part of me that feels like I deserve to go through the interferon/ribavirin meds. Yes GUILT has been eating away at me for awhile.
On a happier note - I finished my Meds Nov. 10. week 4-Not Detected week 12 - Not Detected.. I will be tested early Feb. for SVR 12.
May we all SVR! Brad

gea · « **Reply #12 on:** November 21, 2014, 03:02:53 pm »

Brad
Thank you for a very nice note to my post. I guess the moral of the story is that we should not find this disease to be a guilt trip in any form... rather, we each must grasp our own situation, own up to changes if needed in our lives, and deal with the diagnosis while trying to move forward. Today's medicines have given us that chance to move on! SVR is wished for all ! ;-)

Roger · « **Reply #13 on:** November 21, 2014, 03:29:42 pm »

Quote from: Majorchas on November 20, 2014, 12:40:09 pm

I found one at the Liver Institute in San Antonio, called them and found out they would scan me but my GI said I would have to switch to them as my primary before they would do it...

Majorchas, I had a similar experience and it worked out like this...

2013 my Gastro no clinic or hospital in the Pacific NW owned a FibroScan machine - so I traveled all the way up to Vancouver Canada and paid cash ($500) to have it done on me. It was w-a-y cheaper than another biopsy, non invasive, etc.

2014 I found out that in Seattle a hospital group now owns a FibroScan machine. I emailed them and they told me the same thing that you heard - that I'd have to get onboard with their clinic, etc. I did not want to change Hepatologists.

I emailed them back explaining that I don't want to change, that I went to Canada in the past, etc, etc and that all I want is the use of a local machine and Tech. They could send the report to my personal Hepatologist.

I received an email back apologizing for their mistake and that they would be glad to offer their service (for $300)!

You might tell them that you did it in Mexico but would rather do it at their facility, etc.

IMHO, the FibroSure blood test is far more comprehensive than the FibroScan.

Best of luck!

badbradley · « **Reply #14 on:** November 21, 2014, 09:00:56 pm »

Quote from: badbradley on November 20, 2014, 06:25:27 pm

Hi gea,
Welcome to the Forums! My experience getting treatment was fairly effortless on my part. I had been reading the posts here and was shocked to find all of this Grief most people were experiencing trying to get this medication. I was much impressed by the persistence shown by a lot of you here. I was a little overdue for an ultrasound so I figured I should probably have a look. CT scan 2 yrs earlier - liver looked fine, nothing noted. US IMPRESSION: "Early Hepatic Steatosis". Results call received at 3 PM Aug 6. At 2 PM Aug 7, I received a recorded message from Express Scripts stating that I was approved for Sovaldi/Olysio. Received a call from the pharmacy on Aug 13th stating that my Meds were there and could be picked up anytime. Brought along the coupon info. along with my co-pay cash which was $25 for Olysio, $5 for Sovaldi. Had Meds in hand in less than a week. I couldn't believe how quickly things progressed. But I have this guilty feeling inside every time I see someone new to the Forum who is desperately needing treatment and has to deal with the denial, appeal, denial, appeal, denial, appeal - because they're just not quite in bad enough shape. It appalls me! One other thing that has been bothering me for a long time is that my hep c virus came aboard via shared needles. It was a brief period in my life. I can count on one hand the times I used. I have this underlying guilt that I carry around - that if it weren't for people like me, who decided to inject drugs, probably people who received blood transfusions and nurses who got needle sticks wouldn't be getting Hep c in the first place. I am very sorry for the choices I made. What's more is that I'm not in bad shape - not as bad as a lot of people who can't get a break with these ins. coms. I also take my hat off to all of you who had to endure interferon/ribavirin,etc. etc. I will probably SVR 12 with no problems and feel guilty about that. There's a part of me that feels like I deserve to go through the interferon/ribavirin meds. Yes GUILT has been eating away at me for awhile.
On a happier note - I finished my Meds Nov. 10. week 4-Not Detected week 12 - Not Detected.. I will be tested early Feb. for SVR 12.
May we all SVR! Brad

I guess maybe I should've started a new thread. Had some things bottled up and this is where I popped the cap. Sorry for steppin' all over this thread. Didn't intend to offend anyone-these are just MY feelings. Thanks for listening! Brad

BattleTheBeast · « **Reply #15 on:** November 22, 2014, 02:42:53 am »

Brad,

I'm glad you said all that. I have the same feeling when I read the struggles others are going through to just get treatment. I may be sick but I've been able to quickly get the miracle Meds and feel quilty as well some days. I guess I dontget why anyone would have to get to Stage 4 cirrhosis and be sick just to get help, makes no sense but maybe together by sharing our journeys we can make a difference. I've started a blog which will be shared when ready and this is something else important I need to include so Thank you!!

~Mel~

Mike · « **Reply #16 on:** November 22, 2014, 08:27:56 am »

Hi Brad,

I'm glad you shared, too.

I have a similar experience and acquired Hep-C from sharing needles when I was young (only 4 times). I knew better, knew the risk for Hepatitis (Hep-C wasn't diagnosable back then) but went ahead anyway.

Young and stupid! It was like my youthful indiscretions were clawing me back, making me pay for those four bad decisions.

I didn't feel the guilt. For me, it was shame.

I needed to learn how to let go of all that. I can't change yesterday; and I'm not guaranteed tomorrow. Just today. The here and now.

It's a new day with these meds. A life changing day!

Best wishes, Mike

ma snart · « **Reply #17 on:** November 22, 2014, 09:53:59 am »

Hi everyone
I just joined to post on behalf of my wife's road to a cure, we are currently awaiting the FedEx delivery of her first dose of Harvoni, due by noon today.
I would like to share our experiences so far.
A little background first, Helen was diagnosed in 2005, suspect she was infected during a twin premmie delivery in which she lost one baby in 1983.
Completed 6 month treatment of Ribovarin and Peginterferon, almost killed her in 2006.
Have been going down hill over the last year or so, GI said we should wait for Harvoni due to past problems with interferon and soon as it was approved we started to apply for insurance benefits.
Latest biopsy showed it had progressed to stage 4 grade 3 cirrhosis???
Viral 8.5million
Doctor has a third party (Aureus Health)helping get all paperwork pushed thru.
Got the RX for 24 week treatment about two weeks ago, submitted all to Cigna
First denial was fairly routine in that they just wanted updated viral load.
Got results back Tuesday morning, Aureus resubmitted that day, got approval yesterday, 6 fills total, 75.00 copay, had the support path copay coupon, it covered all but 5.00 no other charges, Aureus shipped first bottle last night for Saturday delivery.
Just wanted to let all know to keep the faith, I called insurance company every day or two, don't stop pushing ever.
Feel like we hit the lottery, you could hear me scream across town.
Snart

BattleTheBeast · « **Reply #18 on:** November 22, 2014, 10:27:15 am »

Welcome Mr and Mrs Snart!

So happy your wife is getting the medication she needs to fight and cure this beast! It is a challenging road for all of us, some even more than others. I feel guilty some days because I was approved so easily for S/O but I think it has a ton to do with being F4 as well. It makes me crazy when I think about all the people who are at F1 or F2 and fighting to get treatment before they get sick, what is wrong with the picture?

Anyway, we are happy you are here to share with us and Mrs. Snart is beyod lucky to have you in her corner helping with this road we are traveling. I am alone and it sure would be nice to have someone to share the burden with. I am sure she is beyond grateful for all that you are doing for her, you are a good guy! I will pray for her to win this battle and for you to continue to be strong and supportive.

~Mel~

ma snart · « **Reply #19 on:** November 22, 2014, 11:00:42 am »

Mel, thank you for the warm welcome, it almost brought Helen to tears,
Still waiting for FedEx.
Cheering for everyone out there.....

BattleTheBeast · « **Reply #20 on:** November 22, 2014, 11:31:54 am »

Helen,

No crying today because you are going to beat this beast just like I am! We are strong women and will win this battle.

Just make sure to drink a big bottle of water and try to take in 64 ounces a day. No other medications, OTC/prescribed or vitamins without Doctors approval or checking it on http://www.hep-druginteractions.org

Any type of antacid even a tums should not be taken until at least 6 hours after you take your Harvoni.

Smile, laugh, and relax. I am looking forward to your post saying you are Undetected and then SVR post 24!

~Mel~

ma snart · « **Reply #21 on:** November 22, 2014, 11:41:15 am »

Mel, thanks for the encouragement, just got the delivery opened bottle and down the hatch pill 1.
Snart

RichardEll · « **Reply #22 on:** November 26, 2014, 02:06:49 am »

Majorchas: Sounds very good. Overall Stats show 94%-99% success rate with Harvoni, even in the most stubborn (1A, nonresponder, cirrhosis) cases. Like me. I'm decompensating badly, after 22 years of known infection and 5 years of (at times) desperate illness.

Had a 10-month fight with Blue Cross over Olysio/Sovaldi, then Harvoni came out. My Drs. and I really worked them over, and they shipped me my first RX of Harvoni (24 weeks total) on Nov. 18 - the day I had to be hospitalized for 3 days. So, I'm really sick - but taking my Harvoni.

MY POINT: 94% is damn good, but my TP team and Drs. have repeatedly told me they have gotten 100% so far, in over 80 cirrhotic patients on Harvoni. I'm #6 on the TP list (out of about 300), so that should tell you how sick I am. I am determined to beat this HepC, and I truly think Harvoni will do it. So do my Drs.

I'm semi-invalid, with complications - abdominal inflammation/swelling, low platelets, etc. - but all my other organs are fine - heart, lungs, liver, kidneys. No matter the outcome, I need a new liver. If the Harvoni works its magic, I should experience SOME relief, while awaiting a liver. Already beat a cancer (HCC), so my MELD score is WAY HIGH for that.

YOU WILL GET RID OF THIS VIRUS. It took bloody forever for the meds to come through, but it sounds like it's in time for you. Me, I'm not sure. But, it would be nice to die, WITHOUT HepatitisC in me anymore. Seriously - that would be some small comfort to me. All the best to you!! RL

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