Author Topic: Two weeks post Harvoni (Read 33661 times)

Bob V · « **on:** March 18, 2015, 04:24:16 pm »

I took my last dose of Harvoni March 1 and did my EOT labs March 5, UND. I went to my doc yesterday and he says I think you'll reach SVR 24. I told him things are looking good but I'll wait until we do labs at week 12, if they come back UND then I'll get excited.

I felt great two days post my last dose, like I had a supercharger. During treatment I was always tired and some days were worse then others.

Anyway that's my 411 for now.

JillLynn · « **Reply #1 on:** March 18, 2015, 06:27:11 pm »

Hi Bob. I too am waiting for week 12 EOT test! I finished Jan 7 ish and am feeling really good now!

Just hoping and praying we all make the 12 week mark UNDETECTED and this virus is gone for good!

Lukey · « **Reply #2 on:** March 18, 2015, 07:49:31 pm »

Congrats on that Bob.

I finished 8 weeks of Harvoni on 3/3/2015.
I go see gastro MD Friday to look at my VL (if I have one or not) and AST & ALT.
I'll be 2.5 weeks SVR if I'm Und at that time.
Then I guess they'll want to repeat these tests in 3-6 months.

I'll keep you posted here as to my results.

Jill - Are you Und?
Glad you're feeling well now.

Joe

anniemybaby · « **Reply #3 on:** March 18, 2015, 08:08:20 pm »

Bob I also feel a great deal more energy since last pill on Sunday hoping for a great summer I was undetected at 4 wks just had my 8 wk test today keeping fingers crossed will not have anymore labs till 3 n 6 months

Bob V · « **Reply #4 on:** March 18, 2015, 09:39:31 pm »

Thanks guys, I guess all we can do is wait.

And yes Annie, lots of energy.

BubbaT · « **Reply #5 on:** March 19, 2015, 12:23:26 pm »

That is good news, gives us up and comers some hope for the finish line,
Praise God, I'm getting better each day, thank you Jesus!

Lukey · « **Reply #6 on:** March 19, 2015, 02:15:58 pm »

Quote from: Bob V on March 18, 2015, 09:39:31 pm

Thanks guys, I guess all we can do is wait.

And yes Annie, lots of energy.

Bob,

Didn't you say you had a lot of fatigue while you were taking Harvoni?
Glad to hear you now have a lot of pep.

Joe

Bob V · « **Reply #7 on:** March 19, 2015, 03:54:20 pm »

Hi Joe
My deal with Harvoni the first few weeks I didn't notice any difference then pre TX, one day it hit me hard. I felt tired like I was getting sick and on my run my legs felt like I was running in soft sand. That lasted around 4 weeks and after that I was always tired but not as bad. I'm retired so my day consisted of one swim, bike or run with a nap every afternoon.

And thanks on the nice words.

Bob V · « **Reply #8 on:** March 19, 2015, 03:56:23 pm »

BubbaT
Good luck!

Lukey · « **Reply #9 on:** March 19, 2015, 04:24:47 pm »

Bob -

It's amazing how hard you exercised even though you've had Hep C.
I'd like to increase my exercise one of these days.
I'm 63.

Joe

Bob V · « **Reply #10 on:** March 19, 2015, 08:46:10 pm »

Joe
I've never thought about HepC has a limit to anything I did. I always knew at some point I could/would have issues but I was going to push it as long as I could. I'm an active guy and in 2001 I took up endurance sports. I know I'm lucky to both be able to compete and now I might be HepC free thanks to Harvoni....I don't take any of this for granted.

JillLynn · « **Reply #11 on:** March 20, 2015, 09:10:17 am »

Hi Joe.
Yes I am Undetected as of 4 weeks post treatment.
My next test is the 12 week biggie on April 6.

Good luck on your tests results. I know you are going Friday and we'll be waiting for your good news!

Annie....so you're doing an 8 week post bloodtest? I guess all of our DR's do it a bit differently. My hepatologist had mine at 4, 12 and 24. Although I was told if still clear at 12 weeks it's gone for good. I'm hanging onto that!
Best to you Annie! will be waiting for your good news too!

Bubba....glad you're doing better each Day. and yes, praise God!

Bob V · « **Reply #12 on:** March 20, 2015, 10:35:30 am »

Jill
Great news and Joe good luck with the results.

Annie, fingers crossed for you too.

As for labs my doc was only going to do a 24wk but I told him I would like a 12wk too so he gave a lab slip for both. I might just take one of the slips and do a 6wk lab.

Anyway, good luck everyone.

Lukey · « **Reply #13 on:** March 20, 2015, 11:54:10 am »

I hate my doctors.
I don't ever think I'm going to go to another doctor again.
They are the pits.
I think I'd rather die than go to another doctor.

I hate them with a passion.

Islandgirl · « **Reply #14 on:** March 20, 2015, 08:58:04 pm »

(re-posted from another topic)

Oh Joe, I'm so sorry.

Nobody likes people like that! We need to be able to trust and relate to people we let close to us - docs and their staff included.

I felt like that about my first gastro many years ago and shocked him by saying "no" to the treatment he was trying to force me into. Treatments at the time would have caused a geno 1b person more harm than good and the odds of gaining any good were not enough to risk. I believe this self-proclaimed "god" (lower case g on purpose

) couldn't believe I actually researched things and voiced an opinion! Anyway, I never went back to that pompous ass again!

My current doc is very empathetic, down to earth and we decide things together. She's very positive about my remaining UND, but I know that if it doesn't turn out that way, she will be caring and spend the time to support me and come up with other alternatives, even if there should be no alternative, I can count on her to help me cope and find a right path.

I wish that for you.

Please don't give up, take a deep breath and know that you are a valuable individual and deserve better. Find what's right for you and please remember that we care about you and will be here no matter what.

When you feel like talking about it, I hope you will. Feel a big hug and a vortex of healing energy surrounding you. ...Islandgirl

Bob V · « **Reply #15 on:** March 20, 2015, 10:09:38 pm »

Joe
Sorry you're having issues with your docs. Being an RN I've delt with my fair share of "God complex" docs but really most aren't like that. I'm lucky to have good docs now.

Bituman · « **Reply #16 on:** March 20, 2015, 10:15:50 pm »

Quote from: Bob V on March 19, 2015, 03:54:20 pm

Hi Joe
My deal with Harvoni the first few weeks I didn't notice any difference then pre TX, one day it hit me hard. I felt tired like I was getting sick and on my run my legs felt like I was running in soft sand. That lasted around 4 weeks and after that I was always tired but not as bad. I'm retired so my day consisted of one swim, bike or run with a nap every afternoon.

And thanks on the nice words.

Hi Bob,

Congrats on your good results, you rock! I am also an endurance athlete, 59 years young. Mostly bike these days. You have probably done a lot of charity races over the years, as have I. All sorts of events dedicated to breast cancer, diabetes, MS, homeless children, leukemia/lymphoma. I even did a training ride once with a group preparing for the AIDS SF to LA ride. But I have never observed or even heard of a ride to benefit a Hepatitis charity. Have you? I would certainly volunteer or at least fundraise for such an event. If you know of something, post up and let me know.

Other Bob

Lynn K · « **Reply #17 on:** March 21, 2015, 01:29:25 am »

Hi Other Bob

The American Liver Foundation has some events not enough but here is a link to the Liver Walk in various cities

http://go.liverfoundation.org/site/PageServer?pagename=2015_llw_main

And the home page for the American Liver Foundation

http://www.liverfoundation.org/

Bob V · « **Reply #18 on:** March 21, 2015, 09:39:29 am »

Hi Other Bob,
I've never noticed any events near me in SoCal. I'll check out the sites Lynn post after I get back from my ride. Gonna do some hills

lovinglife · « **Reply #19 on:** March 21, 2015, 01:41:05 pm »

Hey guys,
I personally noticed a real increase in energy level after about 3 weeks of Harvoni. I am 8 weeks into tx. I guess I never really realized I was SO fatigued from HCV all these years, and just chalked it up to aging and a challenging job. If this is normal, I will take it! As far as exercise goes, I would recommend we all find something we can do and learn to enjoy, and get at it. I have been exercising for 25 years - not crazy devoted, but doing something - even walking 30 minutes- all this time at least two to three times weekly. When we all beat this evil virus, we may just discover we live to be old people, so better take care of these bodies. Not lecturing, just want to share how fortunate I am and how I feel much worse I feel if I even miss a week of moving my body!! Blessings all.

Bituman · « **Reply #20 on:** March 21, 2015, 09:01:07 pm »

Quote from: Lynn K on March 21, 2015, 01:29:25 am

Hi Other Bob

The American Liver Foundation has some events not enough but here is a link to the Liver Walk in various cities

http://go.liverfoundation.org/site/PageServer?pagename=2015_llw_main

And the home page for the American Liver Foundation

http://www.liverfoundation.org/

Wow thanks Lynn. They even have one of those in Phoenix on April 18. And it's even sponsored by Abbvie and Gilead as well as Mayo, where I'm being treated! I'm in.

Liver walks are a super idea and I don't want to diminish their significance, but I had really hoped that there would be events that target hepatitis specifically. The liver walks don't even have the word "hepatitis" mentioned. The only actual liver diseases I see mentioned are alpha-1 antitrypsin deficiency and biliary atresia. They show children with these, which I guess is better from a fund raising perspective than baby boomers with hepatitis.

Oh well, liver walk Phoenix here I come.

Bob

Bituman · « **Reply #21 on:** March 21, 2015, 09:04:31 pm »

Quote from: Bob V on March 21, 2015, 09:39:29 am

Hi Other Bob,
I've never noticed any events near me in SoCal. I'll check out the sites Lynn post after I get back from my ride. Gonna do some hills

Have fun on those hills Bob. I'm going long in the morning. Be safe!

Bob (aka Other Bob)

Bob V · « **Reply #22 on:** March 21, 2015, 10:44:29 pm »

Other Bob

Have fun tomorrow and ride safe.
Bob

Lukey · « **Reply #23 on:** March 22, 2015, 02:58:02 pm »

Thank you for the comments.

I was in an awful mood Friday.
I went up there (25 miles each way) and she sent me back home, said I had to get a referral from my PCP MD. They saw me the last 2 appts with the same insurance card and they didn't pull that on me then. I was quite upset to say the least.
She did not apologize either. It was a gloomy, cold, rainy day, and not a good day for me. I felt better yesterday but still felt like flipping off the whole world.

Joe

BubbaT · « **Reply #24 on:** March 22, 2015, 07:00:14 pm »

Hey joe,

I can relate with you man, sometimes things happen and you get fed up with bS,
So I can say dang man, it's bad enuff having this crap and then you gotta jump thru all these hoops, I'm sayin to myself, dude give me a brake,

Tomorrow will be better bro, look up by faith, and tell the devil to get outta your face!
And your doc to if that helps!

As one warrior to another, fight on bro!

Lukey · « **Reply #25 on:** March 22, 2015, 07:14:53 pm »

Hi-

I guess it really wasn't that big of a deal. I got quite upset but looking back it seems that I kind of over reacted again.
Hopefully I'm learning how to watch myself better.

Making a 50 mile trip in my car isn't the end of the world.
Some times things that pop up seem huge, but they usually aren't.
I thought it was something they did just to be a pain in the neck to me, but life is what you make it.
The harder you take it, the more the stress of it will age you.
Does that make sense?

Joe

Lynn K · « **Reply #26 on:** March 22, 2015, 07:38:54 pm »

Makes me think of a book I heard of which I think was written by a heart attack survivor....

"Don't sweat the small stuff: PS It's all small stuff"

http://www.goodreads.com/book/show/2014727.Don_t_Sweat_the_Small_Stuff

Islandgirl · « **Reply #27 on:** March 22, 2015, 07:39:51 pm »

Yep, Joe, that makes perfect sense!

@Bubba, while I was trying to decide what to say to Joe, you said it all perfectly! Good job saying what I wanted to say, but doing a much better job of it.

One thing I do try to remember, the D... government and insurance regs are making our docs jump through hoops and increased paperwork just to get approval (much less payment) for them to treat us!! Not saying to put up with less than you deserve, just mentioning the frustration for everyone dealing with Big Brother's changing requirements... I'll stop now

Glad you're feeling better, we're all in this together, hugs ...Islandgirl

Lukey · « **Reply #28 on:** March 22, 2015, 09:41:11 pm »

I have a lot of things to be thankful for. I need to keep those things in mind if I come across any more rough days. Over reacting never helps a thing, that's a fact. When the dust settles, you can look back at the energy you wasted.

Bob V · « **Reply #29 on:** March 24, 2015, 04:15:54 pm »

Joe
You're right energy wasted but we've all done it...at lesat I have

Long_Haul · « **Reply #30 on:** March 24, 2015, 04:56:38 pm »

Joe, happy to see you are doing a bit better. I don't think those not in this situation really understand how much stress we put on ourselves just because we are trying our best to beat this damn dragon. Chin up my friend and I hope you get some more good news to cheer you up. There are a lot of good people on this forum pulling for you, we all need a shoulder some times. 2 more days to EOT for me. Then I am in the waiting game until end of June.

Feel better and best wishes,

AL

Lukey · « **Reply #31 on:** March 26, 2015, 01:05:08 pm »

Hi LH,

Thanks for the kind words.

I was doing well then and am doing well now. Did you assume I wasn't?
I may have a bad day once in a while, and if I let on that I did here, that doesn't mean I'm not doing well on other days, it just meant that I wanted to let the world know I was having a bad day on the day that I had it.

I was preaching a tad too much about holistic health things, and many around here are not into that, but I always will be. I was also looking for answers about some things in my personal life, and that was something I was not going to find here. It was taken the wrong way by at least one person and no one else seemed to want to say a thing about it. That was frustrating.

Someone flamed me here last night but I reported it to the admins and the post was locked and I assume the flamer will be banned if they keep it up. I should have done the same with another person here that I felt replied to me very rudely. I made a post that I probably should not have made, about someone I met of questionable repute. Instead of reporting the post to the admins, the person chose to judge me and attack me for it, which was not the right way to deal with it. She seemed to take what I said out of context and judge things about me that were not true, and I found that insulting and very rude. If that happens again, I will report that person to the admins rather than attempt to deal with them.

On facebook if I come across someone I find repulsive, I just block them and that's it with them. On the WWW, it's not uncommon to meet people like that from time to time, people that you know inside you really don't want a thing to do with.

Hoping for our long term SVR. Congrats on the EOT.
I was EOT on 3/3/2015, 3 weeks ago.
Now I can get back on my holistic health therapies.

Long_Haul · « **Reply #32 on:** March 26, 2015, 02:01:41 pm »

Hi Joe, I was actually referring to the doctor issue you ran into. No big deal. I know for myself with most of the problems like that I get ticked off when someone did not do what they are getting paid to do. Healthcare is expensive enough as it is and having worked diligently to support people in that field for 16 years, I don't like seeing lax workmanship that affects patients and adds frustration. So, that being said, I am glad you are "Good" and we now wait to see if our bodies are rid the virus. I wish you well in your wait and success in the future.
Thank you for your kind words,

AL

Lukey · « **Reply #33 on:** March 26, 2015, 05:32:39 pm »

Thanks LH.

I have an inferiority complex at times.
I think I'll like this site a lot better now that I have a plan about how to deal with someone that I may not like here. It's not a bad forum. They have tolerated some of my ups and downs quite well. As long as they're willing to discipline anyone that might attack me, I'm OK with this forum and I don't plan to be a problem here as far as their rules are concerned.

I was pushing my luck with this forum earlier and it got me banned for 30 days.
I wasn't going to come back, and I thought I was mad at them but I changed my mind. Maybe I was going through a type of healing and just felt like mouthing off, I don't know, but I seem to be past that stage.

Lukey

Mike · « **Reply #34 on:** March 26, 2015, 06:50:31 pm »

Hi Joe,

There are some many ups and downs having HCV - it's like a roller coaster at Ceder Point!

I, too, have had some bad experiences with medical professionals.

In fact last year, prior to starting treatment, I had to be cleared by an ophthalmologist in order to begin a course of Sovaldi+INTF+RIBV (this is because Interferon can can cause or accelerate vision problems and I'm diabetic).

At the beginning of the exam, the doctor entered the room, accompanied by an assistant who was in training. I explained the purpose of the visit - to get clearance to start Interferon - and the doctor turned to the trainee to explain.

It went something like this: "Interferon is a medication to treat Hepatitis C and can cause eye damage. Hepatitis C is generally contracted by IV drugs users, homosexuals and...bla, bla, bla."

I almost jumped up and told him to go f@#%k himself; but my eyes were already dilated and I had paid the copay for the eye exam.

Well, tomorrow I have an appoint with the same doctor for my yearly eye exam. I'm actually looking forward to it, and feel that it is a chance to educate a medical professional about HCV. I can tell him the treatment went well, I experienced no vision problems and I'm cured! Trust me, I'll have a big smile on my face when I utter those words.

The point being: As forum members, we all come from different walks of life, different life experiences, different backgrounds, different ages groups and genders. But we all share one thing in common, which is Hep-C and the stigma and ups and downs associated with this disease.

We all heal in different ways (there's no right way) and that's alright, because we are a unique, diverse group of individuals with one common thread: Hep-C.

Thanks for being a member.

Best wishes.

lporterrn · « **Reply #35 on:** March 26, 2015, 07:21:20 pm »

Hi Joe,
I am sorry you had a bad experience with your doc. I wish everyone had better experiences. In fact, I've been thinking about this a lot, and I will do a blog on it. Sorry for your pain, but thanks for inspiring the blog idea.

Really nice to have you back.

Lukey · « **Reply #36 on:** March 27, 2015, 08:46:32 am »

Mike,

I had the eye test also but then decided not to go on Inf therapy after all. I remember the dilation drops they put in my eyes. I hated it when I had to drive home and the daylight seemed so bright for my eyes.

Yes, I know how the MDs can say things like that about Hep C, and which ever category you fall into, it's still an unnecessary insult to you.

Lucinda,

Thanks for welcoming me back and thanks to you admins for working to keep this a good forum.

Joe

Mike · « **Reply #37 on:** March 27, 2015, 05:18:39 pm »

To follow up with my last post:

I went to my ophthalmologist today for my yearly eye exam. Last year was my first visit to this ophthalmologist and, as I reported:

"At the beginning of the exam, the doctor entered the room, accompanied by an assistant who was in training. I explained the purpose of the visit - to get clearance to start Interferon - and the doctor turned to the trainee to explain.

It went something like this: 'Interferon is a medication to treat Hepatitis C and can cause eye damage. Hepatitis C is generally contracted by IV drugs users, homosexuals and...bla, bla, bla.'"

Today, when the doctor entered, he asked how I was doing with the Hep-C, and I told him very well, I don't have it anymore and I was cured!

He said, "you can't cure Hep-C, you can just keep it in check."

I said, "No. Hep-C can be cured and no longer have it."

He looked at me in disbelief, so I explained that "Hep-C is an RNA virus that must replicate to survive, and once replication is stopped, the virus dies off rather quickly. Once the last virus dies, there is no more left to replicate, the virus is cleared and you're cured."

The doctor was astonished.

I went on to explain the new advancements, and the fact that I was probably his the last patient he would ever need clear for Interferon, as the HCV treatment has advanced to the point within the last year, Interferon is no longer in use (I treated with SOL+INTF+RIBV).

I encouraged him to do some research on the new treatments (Google it) and he would be pleasantly surprised.

He told me he would do so this weekend, and said: "That's the best news I've heard in years. Hep-C is not my specialty. That is just so great to hear!"

The point: Don't assume that medical professionals are up to date on HCV treatment. I spent about 15 minutes educating this doctor (and his assistant) on the new treatments, how they work, and how clearing this virus improved my quality of life.

Best wishes, Mike

PS - I still have 20/20 vision

Islandgirl · « **Reply #38 on:** March 27, 2015, 05:34:23 pm »

BRAVO, MIKE!!!!!!!!!!!

Good for you - we all need to take these opportunities when we find them. Unfortunately, there's still a lot of stuff in print stating just what your doc said - that it can't be cured, just kept in check - education is needed everywhere so the truth will be known and the misconceptions corrected. THANK YOU! ....Islandgirl

lporterrn · « **Reply #39 on:** March 27, 2015, 06:35:00 pm »

Fantastic Mike!!!!

mspatnc · « **Reply #40 on:** March 28, 2015, 01:19:34 pm »

Hi All. My name is Pat. I started Harvoni on March 17th. So far, absolutely no side affects and already feeling better. Is that just my imagination or could it be possible.
My depression and fatigue is all but gone. I found out I had hepc in 93 when I went to give blood where I worked. I did a 6 month stint of interferon and had to get off. I was virus free for 3 months after that and felt great, but then, of course it hit me again with a vengeance. I have been totally worthless since then from this devil of a disease.
I feel so fortunate and blessed now. I had my Harvoni within 3 days with no trouble whatsoever receiving it and as I said, already feeling better.
BUT, I do have a couple of questions: Could the side affects start later on after medicine builds up in my body and if you show virus free after treatment, could it come back as in the case of the interferon?
Thank you all for your information.
Pat

Lynn K · « **Reply #41 on:** March 28, 2015, 09:21:29 pm »

Some have more sides some have none individual experience

One day at a time is all we are given tomorrow will bring what it does.

Congrats on receiving treatment hope it goes easy for you and may you make SVR forever

nicole_1234 · « **Reply #42 on:** March 28, 2015, 09:53:21 pm »

There are giant billboards and signs on bus stops all around Los Angeles that say "HEP C IS CURABLE" right now with a phone number. Assuming it's Gilead but I haven't phoned.

Islandgirl · « **Reply #43 on:** March 28, 2015, 10:58:04 pm »

Great news, Nichole!

Too many things in print that still say it's not curable and too many people, including health professionals, that think the same way.

Billboards are a great attention getter and if only a few research or ask questions, it's a huge step for all of us! Thanks for sharing. ....Islandgirl

mspatnc · « **Reply #44 on:** March 29, 2015, 04:10:21 pm »

YOU GO GIRL! God BLESS AND KEEP YOU!

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Author Topic: Two weeks post Harvoni (Read 33661 times)