Third Times a Charm with Harvoni....I hope.

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Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 5/30/2015 8:23 AM (GMT -6)   
The header says it all. Not funny in a haha way though.
For the new guys, this is my third time in treatment. If you follow the thread below, you'll find detailed information of my past struggle with HCV.

http://www.healingwell.com/community/default.aspx?f=25&m=3043359

about the Harvoni side effects:
Diarrhea, headache, nausea, trouble sleeping, unusual tiredness or weakness

Stress and a poor diet causes all of the above. If one relaxes the mind, eats well, meditates, and exercises, perhaps one will experience a better nights sleep and alleviate symptoms.

My problem is ringing in the head. I have had several concussions, and burst both ear drums, so I don't know if the ringing is from trauma or hypertension. Probably trauma, but my blood pressure is usually 135/80-90. Sometimes 145/90 if I'm not relaxed before measured. It used to be 100/80, no matter what, three or so years ago. I don't know. What sucks is neither do the doctors.

MamaLama, themiz, ppm guy, music, arneeb, Paulyme, petlover, Zoarie, Mia333 and anyone else I may have missed, I want to say thank you for all the nice comments and support. And to all the new guys, welcome.

I hope all are well and enjoying the nice spring and coming summer. Everything is such a beautiful shade of green. The deer and turkey are showing their faces, and yesterday, the first hummingbirds.

I'm heading out to ride my mountain bike in Pocahontas Park. I got a new seat, so hopefully butt won't be too sore this evening. Lol! I know, TMI.

Post Edited (Dog LeDon) : 5/30/2015 9:02:58 AM (GMT-6)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 5/30/2015 7:14 PM (GMT -6)   
It feels like summer where we live, Dog. 103 F, in Arizona, so far today.

We are moving into our "summer schedule". Doing any activity needing doing from 6 AM - 10 AM.

I am hoping for your "charm". Enjoy your ride today, and your Springtime. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

imbb
Regular Member


Date Joined Apr 2015
Total Posts : 65
   Posted 6/2/2015 3:51 AM (GMT -6)   
Rooting for you Dog. Trying not to be fearful of relapse and keeping it in today is tough for me sometimes.

And, I do all that you suggest and still have rough sides from the harvoni. Have eaten well for years, take or teach yoga five days a week, meditate daily. Drink lots of water. Live on a small farmi where outdoor exercise is part of every day. Two teenage girls so life is not stress free, but I live what objectively and even to me looks like a very healthy lifestyle. I am mixing the harvoni with keytruda and it is asking a lot of my body to manage it all...maybe why my sides are present.

Some days worse than others. Two months behind me as of today. Underneath the sides I feel better than I have felt in years.

Wondering if the ringing in your ears is tinnitus? I have a lot of hearing loss and a constant noise like crickets in my ears. With blown eardrums I have no idea if it would exist but your symptom sounds familiar....

Post Edited (imbb) : 6/2/2015 3:58:05 AM (GMT-6)


spareparts
New Member


Date Joined Jun 2015
Total Posts : 3
   Posted 6/6/2015 3:01 PM (GMT -6)   
3rd time was a charm for me although the treatment was Solvoldi and Olysio (this was prior to release of Harvoni.) Zero side effects and non-detectable for 10 months. Did Alpha Interferon in 1992 and Peg-Intron/Ribavirin in 2002 which dang near killed me. Thank goodness that this wonderful medical breakthrough called Harvoni is now available, albeit expensive and hard to get for some. Sure wish we would have had it about 3 to 5 years ago and perhaps I would have avoided a liver transplant.

BTW, I have had tinnitus in my right ear all of my life. When I was a kid I thought it was a cosmic sound, (thought everyone could hear it) not realizing that is was coming from within my head. I also thought it was bi-lateral until I did some hearing tests of my own and found that the sound was conducting to the left ear form the right. It is annoying but I guess I've learned to live with it--5000hz @120db very very loud.

Are you getting HCV RNA quantitative tests done to see if the Harvoni is working?

The bike ride is no doubt the best thing for you, except perhaps your bottom. All the best to you

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 6/6/2015 3:48 PM (GMT -6)   
Welcome to the Hep forum, spareparts. We would love to have you start a new topic and introduce yourself so others can welcome you. Congrats on your transplant and treatment. Really happy to see you are free of the Hep C virus. Mama-Lama's (one of our Mod's) husband Mike, also treated post transplant with Solvaldi/Olysio. He also obtained SVR. Great year in the Hep C world. Again, welcome. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 6/7/2015 8:25 AM (GMT -6)   
about my tinnitus-like symptoms, I was in the woods on my mountain bike and it was completely silent except for a woodpecker, wood thrush, and a cardinal's calls. I think the ringing is mostly stress. It just cranked back up as I'm sitting here. Stress amplifies all diseases. I've got to figure out how to chill, not think about the past, besides investments just concern myself with now and plan activities for the future. Like two weeks out. Just live for now.

I'm now wondering about the long-term effects of Harvoni. I mentioned it to my wife. She responded with, "what about the long-term effects of HCV?" Lol.

I got a text Friday from CVS Specialty Pharmacy that my last bottle of Harvoni is on the way to my local pharmacy. Hmm, this last bottle is automatic. I'm going to call Monday just to make sure.

July 14th is the date of my last pill. Of course, it was supposed to be July 15th, but I took two pills one day back in February. The pill caddy has kept me straight since. Six months has passed pretty quick. And much smoother then the three months of Sovaldi, Interferon, and Ribavirin.

I hope everyone has a great rest of the weekend. My 7-year old granddaughter is coming for a 10 day visit, so Pepaw is going to be VERY busy with amusement parks, sightseeing, water park, etc.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 6/10/2015 7:10 AM (GMT -6)   
Dog,
I'll bet you are enjoying every second of your visit with your Grand'!

I am holding positive thoughts for your SVR this time. You have really battled the old dragon and sure do deserve to be rid of this virus. What a journey~

I get a kick out of your wife's comment. From her side of the coin, I can relate to her way of thinking :)

Last pill just a month away. Almost done. Have a blast with the kiddo, Dog. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 6/24/2015 5:48 PM (GMT -6)   
Not much to comment about at this time.
I have 21 pills left of the six month regimen.

I read imbb's posts and I can relate. I have had a case of the blues over the past week or two.
I have kept busy with a few projects. When I complete a difficult one I get a bit of feel good euphoria for a few hours and then back to the blues. Weird.
Maybe it's the Harvoni. Maybe it's a culmination of several factors.

I have a lot to be thankful for so I'll get over it. I have too.

ppm guy's liver regeneration is exciting. I am hoping for a like response.

I wish everyone the best, SVR, everything!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 6/24/2015 7:27 PM (GMT -6)   
Dog...keep the eye on the prize...life.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

music
Regular Member


Date Joined Jan 2014
Total Posts : 272
   Posted 7/8/2015 8:17 PM (GMT -6)   
Hi dog, just checking in on you. Almost through!!! Am sending prayers and hugs. Will be checking back in
You are a good example to so many! We are all here for you🎶
Music👱
"When you reach the end of your rope, tie a knot in it and hang on! FDR
ribavirin and sovaldi...24 weeks. ud vl end of wk 6 & 12. HE, fib 4 & cirrhosis. 1a. UD END of 24 weeks!!! Three mo after end if treatment... Oct. 15, Undetected! 1 more hvc pcr test required.. 6th mo after end of treatment..jan...jan 15th..officially Declared cured 6 mo after end of treatment!!! You can do this, too

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 7/11/2015 10:21 AM (GMT -6)   
Thank you for the kind remarks. This place is R&R from the HCV battle.

I will take the last Harvoni on 14 July. I am going to ask for an enzyme test along with the HCV RNA test. I pray my ALT/AST is in near to normal range and will report the results.

Check this out. I'm a water dog and wakeboarding was my life for many years. In mid 2002, I developed rosacea. It was bad with acne, red face, etc. At first, I thought I had some kind of nose/skin cancer or something. Afterwards, I couldn't expose my face to the sun very long or I would get super red faced; very noticeable. Now it has lightened up to nothing. I went to Water Country USA with my little FAM the other day. I spent several hours in the sun. I sun blocked up and actually got a little tan on my face. No beet red nose and cheeks. Wow. That's cool. I hope it's a sign that my immune system is settling down with the HCV gone.

Another thing, I have woke up feeling like ###t for many years. Rested but ####ty. My wife has never really complained, but I'm a snoring fool. I recently investigated and asked her about it, again. She's like oh yea; you're still a snoring fool. Against my better judgment, I ordered a mouthpiece that keeps my lower jaw even with my upper jaw and has an air hole between the teeth. After the first night, boom no headache when I woke up. She commented this morning that I didn't get my snore motor revved all night. She said I was trying too, but the result was just a purr. Just thought I'd put that out there, sleep is good medicine and more so is quality sleep.
HCV 1985, Geno 1a
Current Treatment, Harvoni 24 weeks
Last Viral Load Dec 14: 387526 iu/ml Geno 1a
Past Treatments:
2014: PegInterferon, Ribavirin, Sovaldi (12 wks) Relapse / Fail
2000: Interferon, Riba (48 weeks) Partial Response / Fail
Fibrosure Test Dec 14:
Fibrosis Score .86 Cirrhosis
Infl Score: .96 A3 Severe Activity

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 7/11/2015 10:47 AM (GMT -6)   
Dog,

You don't have much longer to go!! Your almost there...Hooray!! We've been checking to see updates from you... Fingers crossed you reach SVR and this will all be behind you!!


Kathy and Dennis
DDMom

Post Edited (DDMom) : 7/11/2015 2:24:10 PM (GMT-6)


woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 7/12/2015 2:00 PM (GMT -6)   
Hey Dog,
July 14...Yippee Ki Yay!
I have no doubt that the 3rd time will be a charm and the beast will finally be slain. Can't wait to hear you cheer!

I was lucky...1st time was a charm for me...had essentially asymptomatic hep c for about 37 years (very mild, chronic elevations of my AST and ALT).
Diagnosed and successfully treated in 2013 for geno 1b with Incivek triple therapy. Treatment was a bear, but still...such a blessing. I'd do it again in a heartbeat. Almost 2 years at SVR now...my hepatologist wants to do annual labs for a total of 5 years before he comfortably uses the "cure" word...lol. Yeah, I know he's pretty conservative, but he is a kind and gentle soul and one of the smartest clinicians I've run across.

Anyway, lol at your wife's comment. I received acupuncture for snoring a few years back. After a few sessions my wife said I evolved to a "gentle purr"...hahaha.

Post Edited (woofer5) : 7/12/2015 2:06:29 PM (GMT-6)


imbb
Regular Member


Date Joined Apr 2015
Total Posts : 65
   Posted 7/14/2015 12:31 PM (GMT -6)   
Wow. Last day tomorrow. It felt great for me two weeks ago when I took my hoping-very-much last pill. Hope you have a great day!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 7/14/2015 12:44 PM (GMT -6)   
Thinking of the DOG....Hugs, ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 7/16/2015 8:22 PM (GMT -6)   
Thanks all.
I talked with the nurse from my doctor's office today. Since I was HCV clear last April, my doc doesn't want to test RNA until December. In October I'll go to my GP and get a liver panel and RNA.
Then another RNA and fibrosure in December from the gastro.
I've been feeling a little fatigued, maybe depressed. It's unusual for me not to want to get up and workout in the morning, so I'm a little concerned. I don't think I have cancer or anything. Just a little depressed.
It's been two days since I've had a Harvoni. I'm happy to have that behind me. We'll see how things go.
Thanks again for all the kind words.
I'll check in.

music
Regular Member


Date Joined Jan 2014
Total Posts : 272
   Posted 7/17/2015 9:26 PM (GMT -6)   
Hi dog, just a note to remind you how much you've accomplished completing the treatment and how you encourage everyone else! I don't know, of course. But I think you're feeling down could be needing to hear new tests results. Keeping you in my thoughts and prayers and expecting the best outcome! Will be checking in on you! music 👱
"When you reach the end of your rope, tie a knot in it and hang on! FDR
ribavirin and sovaldi...24 weeks. ud vl end of wk 6 & 12. HE, fib 4 & cirrhosis. 1a. UD END of 24 weeks!!! Three mo after end if treatment... Oct. 15, Undetected! 1 more hvc pcr test required.. 6th mo after end of treatment..jan...jan 15th..officially Declared cured 6 mo after end of treatment!!! You can do this, too

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 7/18/2015 7:58 AM (GMT -6)   
I agree, music. I would like to know now what's going on inside my liver.
Protocol says to wait three months. That will give my body a chance to heal some with the virus gone.
I think I'm going to hear good news in the next two reports, maybe a normal ALT/AST, but I must temper those thoughts with the realization that I might not. :)
I have sought professional counseling in the past, but I'm not there yet.
Thanks, man.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 7/18/2015 2:29 PM (GMT -6)   
Dog,

It has been over a years since Mike finished treatment and his labs took a while to normalize. His red and white bloods are almost normal. But his ALT/AST are in the teens. He is so very thankful to have that all behind him.

I am hoping you join the club for sustained relief.

I think that virus kicks you in the butt.

At this point, Mike has so much with the TP, Hep C returning, multiple OTHER troubles, it is hard to say if he is OKAY at any point as he keeps having to recover from this and than...and he is in his late 60s now....so one slows down!

Thinking positive thoughts,

Hugs,
Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

getcured
Regular Member


Date Joined Jan 2015
Total Posts : 64
   Posted 7/18/2015 10:02 PM (GMT -6)   
Hi Dog- I felt so much like you describe feeling when I finished treatment a few months ago and I wanted you to know I am thinking of you.
I expected to feel so much better then I did as soon as treatment ended but, as I now know, it takes a while for the effects of the medication to wear off. Also, not knowing for sure whether I was "cured" made finishing a big let down.
What helped me was to giving myself some time to feel better and having my blood work taken 1 MONTH after I finished treatment rather then waiting all 3 months. When I learned that I was still clear it made me very relieved and helped me get to the 3 month point without worrying as much. I also had a fibroscan 3 months after treatment ended rather then 6 months after and the results were better then they thought they would be. My doctor said that the liver specialists are very surprised at how much faster people's livers (even those with cirrhosis) are regenerating while on and after treatment then they thought they would. Since insurance covered these tests with no problem I was happy to have the results sooner rather then later. I will have more test in 6 mths but I don't worry as I did before.
In the meantime, I am thinking of you and wishing you the best results possible!! HW

dj
New Member


Date Joined Aug 2015
Total Posts : 1
   Posted 8/13/2015 12:02 PM (GMT -6)   
HEARING LOSS AND HARVONI
I developed it after 2 weeks and after stopping it has not resolved.
I can no longer perform all of my functions at work.
Is anyone else experiencing this?

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 8/13/2015 12:23 PM (GMT -6)   
dj,

Welcome to the HW Forum

You are posting on a topic where folks may not see your post.

I will cut and paste your post into a NEW thread so that others can more easily respond.

It should be at the top of the posts when you come back.

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 8/14/2015 11:47 AM (GMT -6)   
I have dropped in a few times and I see it's been almost a month since I have posted.

DJ, I have experienced some hearing loss over the past 15 years. I have to attribute mine to noise exposure. I have a high pitched whine in my head I think is due to stress. I have had concussions, but I think stress is the culprit because sometimes it goes away with rest and relaxation.

My body is telling me the HCV is gone. My urine is not noticeably smelly. My stools are nice and tight every time, never loose. Yea, I know. Gross. I'm a guy. Lol I know my body though. Eating healthy, exercising and praying the compensated cirrhosis is reversing or healing like I have read about.

I sleep better. Six hours straight sometimes. Lay in bed at least eight hours.

Sometimes when alone I have a little depression. Maybe I'm just lazy and want to lay around. I'm not sure yet. What do I have to complain about here in the U.S.? We are blessed.

Otherwise, I'm just chugging along one day at a time and have nothing to complain about.

I plan to visit my GP in October for a three month post treatment enzyme and viral load test. I will let you know what happens.

Keep up the good fight. Good luck. I wish you all well. yeah

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 8/16/2015 12:33 PM (GMT -6)   
Wishing you well, Dog. I don't think you are lazy, lol. You are a delight to have around here. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 10/8/2015 7:04 AM (GMT -6)   
Hello everyone. It's been awhile.
I went for labs and emphasized to my GP that I want an HCV RNA plus liver panel.
There were no RNA results, so I guess I'll wait until December to draw blood again for that test. However, all my enzymes were normal except bilirubin (1.7). Bili normal is .1 to 1.3, so it's slightly elevated.

Considering my Fibrosure Test in Dec 14:
Fibrosis Score .86 Cirrhosis
Infl Score: .96 A3 Severe Activity

I guess elevated bili is to be expected considering the damage that has been done to my liver over the years. I am pretty sure the HCV is gone because my body functions indicate so (I knew when the virus returned during prior treatment). I hate waiting until December though. Maybe I will hit the GP up again for that test.
Other folks have experienced normalization of liver functions after clearing HCV, so I hope I will experience the same good fortune and my bili will eventually normalize too.

When I wake up, I've always got a headache. I'm going to see a sleep doctor and figure out if I have some type of sleep disorder. This has been going on for some time and I always attributed it to HCV.
I've been feeling pretty good during the day. Still a little depressed for whatever reason.
That's all I got for now folks.
God bless.
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