New here going on week 8 of Harvoni

[vinivv]

Hello everyone just need to vent and log whats going on with me.

Lately extreme fatigue, lack of breath when moving around, working I run my own business so not real option to stop working but I have help so I am not doing a lot for very long.

Pain in lower back feels like pinched nerve, I read others have experienced this, almost debilitating sharp pain. I have had back problems forever so nothing really new here, back brace helps some, icing down and warm bath now and then but its been persistent about 3 weeks now, I noticed I have knots up my spine my back is very tight probably need a massage. 

Week 2 till week 3 I had a severe neck ache on right hand side/back of head but it went away, was grateful that went away.

I forgot to get some labs done 2 weeks back so I am late now for my last 28 prescription, I still have 1 weeks worth of pills but may be held up I hope not. I am hoping labs  get done and sent off to insurance co. I talked with pharmacy about it and they are waiting on results from my Dr. hope this doesn't get screwy and mess things up, they all know I need this expedited but if not its my fault for not doing what needed doing.....

My appetite is good I just need to drink more water, its getting cold and hard to want to drink but I fill 32 oz bottle and take to work make sure that's gone before I get home then I fill it again make sure that's gone by bedtime and I know that's not nearly enough but hell at least its something .

Ok that's all for now

[Lynn K]

The fluid intake should be about 8, eight ounce glasses of fluid so you are doing great. If it helps it does not have to be strictly water alone but fluids so milk and juice also count into your total quantity. Even coffee and tea while having a duretic effect the effect is not more than the fluid consumed. We even get some hydration from food especially wet foods like watermelon.

Best of luck on treatment hope your meds are not delayed. I would be calling someone about this. They don’t want you to fail treatment due to bureaucracy and have to spend twice as much to retreat you. 

[vinivv]

I have 8 tablets left its supposed to be here next Thursday but I will double check tomorrow that everyone is doing their part. I was mad the whole thing happened at first until I found out it was my fault

I felt like dancing a little to a song I was listening to today, at home of course in my office and I was out of breath within a minute actually pretty badly so the stuffs def working on me. Might make appointment this week with chiropractor see if I can get some help with my back. Anyhoo thanks for the reply its appreciated

[vinivv]

Last weeks labs show no measurable hep virus that's about week 7.

[Lynn K]

Congrats for your on treatment results. Now just need to wait until you are 12 weeks post treatment to know you are cured.

Best of luck with the rest of your treatment and your 12 week post treatment results

[Suepod1952]

Hi.  Worried about viral load.  Diagnosed July 2017.  Started Harvoni 8/2017.
Fibroscan F0-2. LFT's are always normal.
Starting VL 3.5 million
4 week.  VL. 774
5 week.  VL. 562
6 week.  VL. 484
My DR oadded 4 more wks of Harvoni for a total of 12 weeks. He thinks I have a chance of clearing the virus.  I have six more pills left
Someone on another blog encouraged me to email "Dr. *******" who messaged me back that I was in great trouble and would clearly fail on Harvoni and would go on to become resistant to all other medications.  He scared me to death with this mean email.  My DR just shook his head and said don't believe what you read on the Internet.
Someone recommended this forum as being very helpful. Any insight?

[Suepod1952]

Didn't see directions how to post so maybe I am in the wrong area. Help

[vinivv]

Sue its ok but you may want to start your own thread.

Harvoni is a 12 week protocol not sure why he only had you doing a 8 week, I was clear supposedly after 6 weeks but maybe there are reasons for that, I don't have my labs but will get them after my treatment, actually I am talking with my dr tomorrow and may ask to have them mailed or pick them up I am curious and like seeing things in writing.

Not sure whats up with your situation but I would question WHY dr only had you on 2months cycle that is not common practice I don't think, are you sure its Harvoni because there is another treatment that's only 8 weeks.

I have been having extreme muscle spasms in my back and neck for awhile now almost a month in my back and now have pinched nerve and it got pretty severe this  week when I stumbled at work in a shallow hole and jarred my back, nearly put me to the ground so contacted Drs office early today left message and of course never heard back today which pisses me off lol.

THEN I got a total run around chasing my last 28 day prescription down, something went real wrong and its kinda my fault but this got re ridiculous since the pharmacy dolling out my meds had no prescription for me anymore, it lapsed and had to be started over and my insurance said they weren't going to fill it. so I called everyone I could to get this expedited and it got more screwed up. Finally I got a hold of someone who was able to get the thing going again and i'll be without pills the next 2 days should have them by Friday or Saturday I hope. Not even my Drs assistant did it right who I'm gonna be talking to tomorrow if IF she calls back. Its amazing how screwed up things can get if everything doesn't go just so, I had to delay starting my meds a month because I had just had another procedure on my heart done so I could be ready and healed before starting Harvoni that's was the beginning of a disaster that is now showing its head LOL oh well not gonna worry about it, see what happens in next few days.

[Lynn K]

Hi Sue

Harvoni can be prescribed for as few as 8 weeks for those with low viral loads who do not have liver damage and never treated previously.

Viral load testing on treatment means nothing. The only test that matters is the 12 week after treatment has ended test. We had at least one member here named dragonslayer who not only tested detected with a low viral load at end of treatment but also still detected at 4 weeks after completing treatment. However he went on to undetected at 12 weeks post and is still cured now over 2 years later.

Just hang in there and keep up with your meds. Harvoni has a very high cure rate especially for treatment naive at around 98%. So odds are in your favor you will be cured.

If it does end up that your treatment does not work it is because you already have a resistant strain not the treatment creating a resistance. So if you should fail you will have resistance testing done and then go with a different treatment appropriate to the resistance you have. There have been a few here who did fail an initial treatment but later treated with different meds and were eventually cured.

But first finish your 12 weeks of meds and try not to worry until you have the 12 week post treatment test. That is the only test that matters.

Good luck and let us know how you are doing.

 

[Suepod1952]

Lynn thank you.   I duplicated my post and couldn’t move this.  It was tricky posting

[Lynn K]

We can move posts but as there have been several comments it didn’t seem like a viable option. Just keep up on your new thread.

[vinivv]

Took my last pill on Friday God what a relief so hoping to feel better soon and remain cured. Soon as I get my next blood work will post results...

[Lynn K]

Congrats on finishing treatment now just the long wait for the 12 week post test and officially cured!

[KimInTheForest]

Congrats on reaching the finish line, vinivv!

kim

[vinivv]

Welp 2 months now after treatment and blood work came back negative for virus so I am free of HepC also did some sonogram updates and everything looks normal I do have a bit of cirrhosis but not much to worry about, this is all quite a blessing and relief.

I may check back in 6 months and give an update I hope everyone here has the same results that I have had, this is a new age of medicine so much works being done next thing I am having is stem cells put in my knees. I am in physical therapy now after having gone through so much last few years and my arthritis worsening to the point it began to fuse together I had to get some help with that and its going so very well, stretching, exercise and chiropractic has been a blessing for this aging painter lol, life can get rough just keep fighting everyone never give up, and pray

[KimInTheForest]

Congratulations vinivv! And good luck with your knees!

kim

[Lynn K]

Congrats on the 2 months not detected and cured!

I assume you will be getting blood testing and abdominal ultrasounds every 6 months and seeing your liver specialist every year for follow up on your cirrhosis.

Good luck!

[Mugwump]

All my best! I can tell you that I have managed to overcome a great deal only because I am finally rid of HCV. It played hell on me to say the least and put me out of work over the years many times. The truth is that I am more employable at age 65 than I was in my 30s and 40s. I went through hell with HCV and was one of the unfortunate who had all sorts of extra-hepatic manifestations with my immune system in overdrive fighting off the dragon. My thyroid function went crazy and I was diagnosed with Graves Disease at the age of 39! Which is almost unheard of for men at that age.

I also had spells of almost incapacitating weakness with flu like symptoms in my muscles and was checked for just about every disease that can cause that problem from the time I was in my 20s all the way to a final diagnosis of HCV in 1993.

After initial interferon treatment in 2003-2004 I had to undergo steroid injections in my back for 3 years to relieve pinched nerves between L4 and L5 just so I could work at all.

Today 3 years post treatment I am more productive than I have ever been, most importantly I have regained a sense of self worth which was to a great extent stolen from me by HCV!

Cheers
Eric