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Hep C Discussion Forum -> New Members Area -> NJ_Mel - New Member :)
Post Info TOPIC: NJ_Mel - New Member :)
NJ_Mel


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RE: NJ_Mel - New Member :)
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Hi Mallani,

I had a Fibrosure Blood Test, also before final diagnosis I had 2 Ultrasounds and an CT scan.My Dr. didn't feel the need to have me get a biopsy based on all the results. If I had entered into a clinical trial in his practice the biopsy would have been required.

Mel



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Female 56, GT 1a, VL 8.3 million, F4

Started with 8 wks of S/O then switched to 24 more of Harvoni due to Olysio reaction

UD at 9 weeks in,  AST 20 ALT 19 

January 1, 2015 started week 5 of Harvoni and week 13 of Treatment
mallani


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Hi Mel,

Welcome from me as well. May I ask how your cirrhosis was diagnosed? You don't mention a Fibroscan or biopsy.

Despite your 7 weeks of Olysio, I guess you are almost 'Rx-naive', so the 12 week Harvoni protocol should be enough. Good luck and keep us informed. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
NJ_Mel


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Hi Matt,

 

Thanks for the welcome, happy to be here, well not happy but it could be worse, right? There is such a stigma around Hepatitis and it's been a real learning process for me since July of 2014.  I have finally shared it with those I need to and it's such a load off of my shoulders. I honestly am not sure how I got it but it really doesn't matter. I have it and now I will fight until I beat it and hope to god that one day soon it's cured for good. 

I was never a drinker but now that I can't drink, every once in a while I think wouldn't it be nice to have a glass of wine? I didn't even think that when I could drink except of course when I was in Europe where it's more normal than water. What a strange thing our minds are and the minute we can't have something we want it.

Looking forward to getting to know all of you and see us all reach SVR and support the new people as the enter treatment and the forum.

I am just working on being the best me I can be and hoping every day I will start to feel better! 

 

Mel



__________________

Female 56, GT 1a, VL 8.3 million, F4

Started with 8 wks of S/O then switched to 24 more of Harvoni due to Olysio reaction

UD at 9 weeks in,  AST 20 ALT 19 

January 1, 2015 started week 5 of Harvoni and week 13 of Treatment
Matt Chris


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Hello Mel

Welcome to the forum, and also welcome to the Harvoni Treatment Train. Enjoyed reading your story, very happy you found a compassionate ID doctor, its a real benefit. You have picked a great time to address your HCV because we are in the mist of a revolution of all oral treatments. We need open and compassionate members like you in the forum to help encourage and let our feelings and concerns come out in the open during this rough journey of our life.

Talking about HCV and all that it brings to the other people can be difficult and most neither want to understand nor have the empathy but it's exactly the opposite with the friends that you will find here.

So welcome to friends that like you, can totally relate.

matt        



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
NJ_Mel


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Thanks for the welcome everyone!

 

Hope we all have SVR in 2015! That will make it a happy New Year!

 

Mel



__________________

Female 56, GT 1a, VL 8.3 million, F4

Started with 8 wks of S/O then switched to 24 more of Harvoni due to Olysio reaction

UD at 9 weeks in,  AST 20 ALT 19 

January 1, 2015 started week 5 of Harvoni and week 13 of Treatment
Brownie


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Hi Mel,

Your story was so descriptive I felt like I was there. With me it was a gut feeling because I had no obvious symptoms yet I felt something was wrong. Blood tests showed my thyroid was off and critical AST & ALT levels. I requested a hep c test. Confirmed. After a biopsy, they told me I also had cirrhosis and a fatty liver. Three strikes against me-I was terrified!

That was two years ago. I was treated and cured with sovaldi/olysio with some lasting side effects. I am curious about the rash you talked about. Where was it located and what did it look like? Nobody ever mentions specific skin problems except dryness. But my hypothyroidism could explain that away. Is anyone else having lingering side effects?



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pl1952


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Welcome to the forum Mel!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5
Bills


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Lots  of train stops in Jersey Nice



-- Edited by Bills on Saturday 3rd of January 2015 12:36:33 AM

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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

beingsassy


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Mel,

welcome to the forum. You will find lots of people here who can answer questions about side effects and such. Good luck with your insurance company, they can be such blank blanks at times. It's looking good for you with your tx so far. 

Gigi



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genotype 2 completed sovaldi and ribavirin on 6/4/14. SVR on 12/3/14
ToniGoingForItAgain


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Hey there fellow Jersey girl, I just started Harvoni, going for 3 days today!  Anything is better then the old treatment of Ribovarin, peg interferon, and victrellis that I suffered like a dog for 12 weeks only to find out it wasn't working.

This one pill a day is like a honey pie gift that was sent from a heavenly place!!

Lets be treatment buddies and together we will be HCV FREE!! 

 



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Toni
Cinnamon Girl


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Hi Marcie, welcome to the forum, good to see Rubye recommended us to you!

Thanks for introducing yourself and giving us the background to your diagnosis and journey towards your eventual treatment with Harvoni.

You certainly had to go through a very roundabout before finding out you had Hep C and I`m sure many of us here can relate to that, and the frustration of knowing something was wrong but not what was causing you to feel so dreadful.  And then the shock of getting the diagnosis and dealing with that, which is a perfectly natural reaction.

It`s great to hear that you started treatment so quickly and congrats on your undetected result, you`re clearly responding very well!

The issue of getting your future refills is very annoying, and I`m sure other members who have had similar experiences will be able to comment more. 

Best of luck!  Jill

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
NJ_Mel


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Hi All,

 

New member here, introduced to the forum by a friend Rubye!   Here's my story...

 

On a beautiful spring day in 2014, I worked all day, jumped on a train, and headed for a conference. When I got to the city, I walked to the hotel, which was about a mile from the station. It was a beautiful evening, so after check-in I went out for a walk and grabbed some dinner. I drank an herbal tea to help me settle for the night and around midnight I fell asleep. I was startled awake by people slamming doors in the room next to me. This was followed with music and more commotion. It seemed like each time I drifted off, something would startle me awake. I may have slept two hours all night. After an all-day conference that ended with dinner, I headed back to the hotel for the night. I was exhausted. I asked hotel staff to move me to a quieter room, which they did. I took a Benadryl to ensure adequate sleep. I had used Benadryl before when traveling for work and it never left me with a hangover in the morning. I was sound asleep by 9 p.m. At 6:30 a.m. my alarm went off for day two of the conference, but I could barely move to hit the snooze button. This cycle continued for two hours: the alarm, the snooze. I texted a co-worker explaining that I couldn't make it to the conference, asked the hotel for late check-out, and passed out again. Eventually I woke up, packed, and dragged myself back to the transit station. I made it home around 2:30 p.m. and immediately fell into another deep sleep.

Thinking I had a flu bug, I called in sick the rest of the week. Although I had no fever, I had no energy at all. I knew something wasn't right so I saw my doctor, who ordered blood work, thinking it was something to do with my thyroid. This was the beginning of more than three months of testing, working from home, and not getting any answers. I was exhausted, dizzy and had blurred vision. I was constipated for days at a time, and I went from not being able to stay awake to being unable to sleep. Somehow, I managed to take care of my 13-year-old grandson and work from home every day. I had to pay the bills and help my daughter, who was getting married soon. Also, I had to keep my medical insurance.

Still no answers. I would be sent to a variety of specialists, have a biopsy of a nodule on my thyroid, and receive a diagnosis of Graves disease before my doctor discovered that my liver wasn't functioning well and that I had hepatitis C. The soonest appointment I could get with a gastroenterologist (GI) was three weeks away. It was three weeks of misery. I was still so sick, my brain was all fogged up, and nothing in my body was working correctly. When I finally saw the GI specialist, he looked at my chart, tapped my belly, and ordered more blood tests.

After being so sick and living for months with no answers, I had my answer, and I was overwrought from the reality of a hep C diagnosis. I can't tell you how many times I examined my eyes looking for tinges of yellow. However, as usual, I put on my happy face and managed to support a special family event that took me out of town for two weeks. My next GI appointment was when I returned. My viral load was over 8 million and my liver enzymes (AST and ALT) were high. He referred me to an infectious disease (ID) specialist.

When I called the ID office, I asked the extremely sweet receptionist which doctor was the most experienced and who she would send her mom to if this happened to her. The doctor she recommended was booked solid for a month, but she said if I called her every morning she would get me in one of the offices as soon as possible if I would be willing to travel to the office with the opening. Two weeks later, I had an appointment with Dr. N. He entered the room with a huge smile. When he shook my hand, he covered it with his other hand and I began crying hysterically from a combination of his compassion and the reality of where I was. He looked me straight in the eyes and said  "We will get you cured" He ordered a variety of tests and we discussed my options. I have genotype 1a and stage 4 cirrhosis my platelets were low, my ALT and AST High. After successfully completing the critical tests, I was quickly approved for Sovaldi and Olysio. On October 28, my 12-week journey to the cure began.

Right from the beginning I started having a pretty nasty rash, we tried a bunch of different tricks with it but it became so bad that at 7 weeks into treatment Dr. N said that was enough, we need to get you switch to Harvoni and off the Olysio. It took some fighting with the insurance company actually the specialty Pharmacy but finally with some serious discussions we got them to approve the Harvoni. At 9 weeks my blood work came back and I was finally undetected with my ALT 19, AST 20 and normal platelets to boot. I still have the virus showing up at 2 weeks and 4 week tests. 

On 1/1/15 I started my 2 bottle of Harvoni, my battle with the insurance Company isn't over, although the bottle says I have 4 more refills I am only approved until 3/3/15 which means 2 more bottles when I need 4 more. I will battle and fight to get the medication and I have a great Dr who is advocating for me as well. 

I will try not to be long winded and bore all of you in my future posts!

 

Mel

 



-- Edited by NJ_Mel on Friday 2nd of January 2015 08:10:42 PM

__________________

Female 56, GT 1a, VL 8.3 million, F4

Started with 8 wks of S/O then switched to 24 more of Harvoni due to Olysio reaction

UD at 9 weeks in,  AST 20 ALT 19 

January 1, 2015 started week 5 of Harvoni and week 13 of Treatment
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