Author Topic: Plan on starting Harvoni treatment in July. I have concerns. (Read 20660 times)

Mwmorris10 · « **on:** June 23, 2016, 12:21:54 am »

Hey everyone,

Michael here. A little back story on my situation... I'm a 25 year old male living in Minnesota (recently moved from Wisconsin). My mother was diagnosed with Hepatitis C genotype 1a a few years back. When this was brought to my attention I figured it was in my best interest to get tested. This was, after all, the woman that not only gave birth to me, but also raised me and was constantly around me for a majority of my life.

I got tested. One day later I received a call from the nurse. She told me the that I had indeed tested positive for hep C. My viral load was 1.7 million, and I had the same genotype as my mother, so I'm assuming I contracted it from her (go mom!).

I immediately got into to see a doctor about the results. He ordered more blood tests to check my liver health and whatnot. Everything checked out and he told me not to worry about it and just get annual check ups on my viral load and liver health.

At this point I just threw the diagnosis under the carpet and proceeded to live a very reckless lifestyle, involving a lot drugs, alcohol and partying. This was obviously the last thing I should of done. I honestly think it was the result of denial and a lot of anger and sadness stemming from the diagnosis.

Fast forward a couple of years. My life is back on track. I'm ready to nip this thing in the butt. I'm thankful to be living in a time when reliable treatment options are available. I'm set to start Harvoni treatment the 1st of July. Nothing has really changed with my lab results. No liver damage. Viral load is still 1.7 million. I have my concerns though. It's scary reading some of the treatment stories on here. I also saw first hand with my mother the negative impacts treatment can have on the body.

Mwmorris10 · « **Reply #1 on:** June 23, 2016, 12:53:26 am »

I should also add that I've been dealing with depression, sever anxiety, joint pain, minor nerve pain, and headaches since I was in grade school. I was diagnosed with severe children's migraines in 3rd grade. That was around the same time all the other issues began to manifest. The migraines cleared up in middle school thankfully. I often wonder if these issues are a direct result of my hep c.

KimInTheForest · « **Reply #2 on:** June 23, 2016, 01:10:00 am »

Hi Michael. Welcome to the forums, and thanks for sharing your story!

I think you are very lucky to be able to start Harvoni next month. You will almost certainly be cured - and in just a few weeks. I understand your apprehensions. But don't let the stories of treatment problems or post-treatment problems scare you off.

One thing to remember is that here on the forums, people having problems are more likely to post than people who aren't. So that can skew your interpretation of how many people are actually having problems during or after treatment. I say that as one of the people who has had serious post-treatment problems after my 12 weeks of Harvoni. But still I would urge you to seize the opportunity to take the Harvoni and rid your body of hepatitis C for good.

I have a feeling that the majority of people in the world do their 12 weeks of Harvoni with little or no problem, get cured, and go on about their normal lives, but with the benefit of gradual improvement to their health. Those people (and I know a number of them) don't tend to post on the forums so much (or at all) because they don't need the support or information.

Good luck, and do keep us posted. You will likely find the 12-week course of Harvoni a breeze. Don't go into it expecting any side effects or you may manifest them...

best,
kim

gnatcatcher · « **Reply #3 on:** June 23, 2016, 07:50:01 am »

Welcome, Michael. I started my twelve weeks of Harvoni last July, so I can report "from the other side." Kim makes an important point about those who didn't have problems being underrepresented on hep forums.

I had an easy ride. To help things go smoothly and minimize any headaches, stay very well hydrated. Whether you use the "one ounce of fluids for every two pounds of body weight" formula or base intake on keeping the color of your urine light, Harvoni really seems to want all those liquids.

Which treatment was your mother on? If it contained interferon and/or ribavirin, those are very rough treatments. Harvoni is easy for most people. In fact, Harvoni gave so many of us extra energy that we nicknamed it the "Harvoni High." After decades of fatigue, it was amazing how much I got done during the 12-week Tx.

Like you, I had joint pain and minor nerve pain for years -- what little of that is left after being cured can probably be chalked up to my being a senior citizen with a couple of smooshed discs in my lower back. So, once cured, you may get relief from some or most or all of what plagues you. Hep C is notorious for creating extrahepatic manifestations (EHMs) that are often misdiagnosed as separate problems.

Looking forward to reading about how your treatment is going.

Best o' luck,

Gnatty

slats1056 · « **Reply #4 on:** June 23, 2016, 09:29:11 am »

Hey Michael ,
Welcome to the Crazy Train! Hop on and enjoy the ride

. The ladies are right, don't let the posts scare You. Grab Your treatment by the horns and get after it

. If all the people that didn't have problems posted here this place would probably blow up! Read up , take everything with a grain of salt , and You will see what I mean. This is an excellent place to gain knowledge and info. as well as vent and ask question as well. This is a great site for support for You as well , it has been keeping Me sane for the last year. Everyones Sxs. and problems are different , yet some are shared amongst many. If You think to much You will talk Yourself into all kinds of crap. Keep an open mind and go for it

.

Mwmorris10 · « **Reply #5 on:** June 23, 2016, 01:29:45 pm »

Wow! I greatly appreciate the responses from everyone! I'm gonna go ahead and start the treatment as soon as I can. Your input definitely helped fortify that decision. I'll be sure to start a little log once I begin treatment. Can't wait! Thanks again!

FutureThinker · « **Reply #6 on:** June 23, 2016, 02:21:03 pm »

Welcome to the forum, Michael! I am one who finished Harvoni in May and had zero issues with it, experienced the "Harvoni High" and quickly noticed much better mental clarity in addition to the improved energy. EVERYONE IS DIFFERENT, we all react differently to these powerful drugs, so don't look for any negative effects based on the comments you've read here. There are plenty of us who are not having any major issues, during or after Harvoni treatment, so think positively and focus on getting to the other side, the side of SVR. Also, be sure to carefully read each member's signature before making a decision on how your situation compares to theirs. Some members have to take additional drugs with the Harvoni, i.e., ribavirin, some have advanced liver damage, some have other significant medical issues, etc. So you need to take all the information into consideration in forming your ideas on this treatment.

I hope your journey is as enjoyable as mine and your path to SVR is smooth. Keep us posted and all the best -- the future is bright, FT

morab · « **Reply #7 on:** June 24, 2016, 08:51:23 am »

Welcome to the forum Michael!
Most people on Harvoni have very few symptoms. I have a girlfriend not on the forum. She just started Harvoni 5 weeks ago and she is having no symptoms and is continuing to work and keep a very busy lifestyle at the age of 65!
Try to stay stress free, drink lots of water and the time goes by very quickly. Here's to hoping you get the Harvoni High! I have had a few days during tx of more energy.
There is light at the end of this tunnel.
Keep us posted!
Morab

Lynn K · « **Reply #8 on:** June 25, 2016, 02:03:32 am »

I did the old treatments 3 times with out result. I have cirrhosis and am 58. I treated with Harvoni for 24 weeks due to my treatment history and cirrhosis. Just some mild headaches was my experience. Cake walk compared with the old interferon shots.

I did add ribavirin to my treatment which made it a bit tougher but still made it through. May 4th was my one year cured anniversary after 37 years of being infected.

Good luck to you on treatment now go kick some dragon butt!

MommaT · « **Reply #9 on:** June 26, 2016, 03:53:46 am »

Hi Michael-
The good thing is #1-you found the Hep C and #2- to have caught it early enough. And #3 now is the time that the medications just have mild side effects. (when you catch it early the treatment works better) Be brave! that is what someone told me. Take it from experience found out after 9/11 that I was positive but, I have waited because Treatment options seemed too many side effects. Recently my blood work numbers (that were always normal) went crazy. I started loosing weight and had weird symptoms. I just had a Fibroscan and I am Stage 4 Compensated Cirrhosis - it crept up on me. I am getting on the new combo being approved soon. I know the best thing is to clear my liver and hopefully will stop the advancement of Liver Disease. My Gastro said once cleared I can do quite well! I was really upset that they said Cirrhosis but, it answers all questions of symptoms I couldn't explain. Don't wait! MommaT

Lee1117 · « **Reply #10 on:** June 26, 2016, 01:10:48 pm »

Hi Michael, I finished my last pill of a 12 week treatment on April 18th. I wanted to let you know that I had no issues during or post treatment. The only thing was a few headaches that were treatable with an increase of water intake. Viral load went down to20 after 4 weeks and undetected @ 6. As of June 9th still undetected. I will be retested in Oct. In my opinion I would say your odds are good for smooth sailing through this. I wish you all the best.

yag1064 · « **Reply #11 on:** June 26, 2016, 08:10:46 pm »

Hi Michael,
Welcome to the forum of enlightenment. All the stories that I read sound true to my experience. If you start Harvoni, take care of yourself by treating yourself as special. Good food, well rested, and as free of worry as you can be. Change what you can to bring peace to your mind. Live the life you have. Have fun.
Everyone will offer suggestions as I did. Everyone has taken a journey which is long and hard. Each experience is different but genuine. Remember this is your personal battle. You will be the one putting in the effort to win this important fight. You are your best advocate. We will be here to help you up when the war gets tough.
I can see the light at the end of my tunnel after nine years, three treatments, and two appeals.

Fare well on your journey,
Rick

dragonslayer · « **Reply #12 on:** June 27, 2016, 09:12:15 pm »

Hey Michael,

Im another no issues guy. As has been stated here, those reporting side effects are definitely over represented on these forums. Ive gone out on a limb and challenged some side-effects reporters and Harvoni bashers for just this reason: I didnt want their uncorroborated reports of dire side effects scaring off potential patients... You will find as you read these pages that people all too often conflate correlation with causation; just because a symptom occurs on treatment is not an indication that it was caused by treatment... That is not to say that among a minority of patients, some minor side effects don't occur... Predominantly they run the gamut from headache to insomnia.. But in general, this is an easy treatment to take, will not influence the run of your daily activities, and will be over before you know it, with an excellent outcome..

Best of luck to you!

BillT · « **Reply #13 on:** June 29, 2016, 10:40:24 am »

Hi MW and welcome to the forums,
If you read those posts again,most of those that had the hard time were the ones had the ribas added.Most of the time they only add that if your liver is buggered.From what you've said I'm assuming they won't.You have to make the decision but also realize,as I posted yesterday,the FDA just approved Gileads new treatment(Epclusa).Someone here was in the trials(I'm sorry I don't remember who)but they tolerated it very well.GL on whatever your decision is.

pansy · « **Reply #14 on:** June 29, 2016, 07:11:15 pm »

Hi Michael,

Good luck with your treatment, you are lucky if you have to get hcv, to get it when the cure treatment is available now!

Drink water all the time, and be gentle to yourself.
You can beat it, and be cured!

I think Kim made a great point, people come on here when they're needing help, advice, or an ear...
The one's who are doing fine just read, and lurk...

There are some fantastically helpful people on this site!

All the best with your 84 pills! (I kept my empty bottles as a souvenir!)

pansy

Baxter · « **Reply #15 on:** July 01, 2016, 03:01:17 pm »

Michael, I'm going to take a slightly different tack.

I probably had worse side effects than the vast majority of people here, but even at that they were basically a walk in the park. The insomnia was the worst, but it was quickly and effectively treated with ambien. In all honesty, most of the problems I had during treatment were probably attributable to the ambien rather than the harvoni, but I had to do what i had to do to get a good night's sleep every night. And, lest you worry, I should point out that my insomnia was on the extreme end of the scale - very few people experienced it as badly as I did, so the likelihood that you'll have anywhere near the problems I did is infinitesimal.

So, yeah, the 12 weeks weren't without incident, but frankly, the drug worked so quickly and so effectively that it pretty much obliterated the virus in the first week (in fact, the 2nd day of treatment was the healthiest I'd felt in over 20 years), so the side effects were far, far more than cancelled out by the generally better health.

Now I'm just over 2 weeks post-treatment, tapering way down off the ambien, and feeling even healthier than I was during treatment. In the scheme of things, that 12 weeks was a brief shower on an otherwise glorious spring day. If I were you, I wouldn't let it worry you much. If there are any issues, they'll almost certainly be mild, probably treatable, and definitely worth it in the long run.

Best of luck to you. And, oh yeah - if you want some info on the top hepatitis docs in the Twin Cities area, feel free to PM me.

morab · « **Reply #16 on:** July 01, 2016, 03:50:56 pm »

Michael, I have 3 friends who did Harvoni treatment with NO symptoms at all! They never joined the forum! Most people get through this just like that! Keep us posted!

Baxter, good to see you posting and thanks for helping me get started that day not so long ago when I first began tx.! I am counting down the days and have 8 left to go! I have been undetected since 4 weeks into tx! Beginning to see the light at the end of the HEP C tunnel.
We will see many of us graduate this year!
Morab

Outdoors6 · « **Reply #17 on:** July 05, 2016, 12:40:01 pm »

Hi, New to the site I was diagnosed with Hep C in "09" my blood work is genotype 1a now my understanding is Harvoni is a treatment with little side effects. But the VA does a Val pack does any one know if the type of med. has any side effects?
Thank You

Lynn K · « **Reply #18 on:** July 05, 2016, 01:08:58 pm »

I think the medicine you are asking about is called Viekira Pak as you have genotype 1a you will also need to add Rivavirin to your treatment.

I took Harvoni but we have many Vikerians here who will be better able to comment in their treatment

I suggest you could start a new tread about starting Viekira treatment and have questions.

Good luck
Lynn

morab · « **Reply #19 on:** July 05, 2016, 01:24:14 pm »

Outdoors6
I wonder why the VA won't get you onto Harvoni instead, as for Genotype 1a, it is one pill a day without the riba?
The Harvoni from what I have heard would be much easier on your body to take.
I have 1a and on my last week of tx. I have been undetected since 4 weeks into treatment.
Good Luck
Morab

Outdoors6 · « **Reply #20 on:** July 05, 2016, 01:25:14 pm »

Thank You

Outdoors6 · « **Reply #21 on:** July 05, 2016, 01:34:39 pm »

Not sure but my understanding the VA does not administer Harvoni and to be quite honest I would not be interested in a shot of Ribovarin to many side effects.
Thank You

Lynn K · « **Reply #22 on:** July 05, 2016, 02:33:45 pm »

Ribavirin is a pill I guess you may be thinking of intreferon who's is one shot a week but I am not aware of anyone in the US taking interferon. Viekira Pak is multiple pills and for people with genotype 1a Viekira Pak is not as effective so they need to add Ribavirin pills.

I am thinking the VA is trying to keep down treatment costs as harvoni is much more expensive than Viekira

Outdoors6 · « **Reply #23 on:** July 05, 2016, 03:56:09 pm »

Thank You.... for the information i will follow up with the VA to see what the actual reason are. I may follow up with outside GI also. I keep hearing good things about Harvoni.
Thank You

morab · « **Reply #24 on:** July 05, 2016, 04:38:19 pm »

Harvoni from what I see here on the forum has so many fewer side effects than the Viekira with the Rivavirin..

The VA needs to give the people who served our country the BEST medication available!

Maybe you should start a topic on Veterans who are on treatment, applying for tx or post tx to see what they were able to get. You deserve the best available treatment in my opinion!
Good Luck
Morab

Outdoors6 · « **Reply #25 on:** July 05, 2016, 04:49:58 pm »

After 26 years spanning from the Vietnam era to 2009 in this war with a a break in between finishing with 26 years. I would think that they would give a choice... if not like I said I will look for a GI Dr. outside..... Thanks again

Outdoors6 · « **Reply #26 on:** July 05, 2016, 04:51:21 pm »

Thank You Morab for all the information..

Lynn K · « **Reply #27 on:** July 05, 2016, 05:15:15 pm »

I am also a veteran 8 years Army but as far as I know I am not eligible for VA medical services. I tried looking into it and all I could find was you had either be a disabled veteran or on a very low income.

morab · « **Reply #28 on:** July 05, 2016, 05:22:04 pm »

It is shameful that our veterans are treated this way! You should all receive the BEST benefits ever for the rest of your lives, more so than that of a congress or senator.
There needs to be a huge system change that cares more about the Veterans of our country!
This sort of thing really pisses me off.
I commend you for serving your country! With no future benefits after/ that is so disturbing!
My father was a WWII Veteran, he was sent to college after the war by the VA, but got very little when he became ill later in life. Shameful!
Morab

Lynn K · « **Reply #29 on:** July 05, 2016, 05:35:08 pm »

I served from 1976 to 1980 I had a break in service and then came back to the Army from 1984 to 1988. I did get the Vietnam era GI bill which I used all my benefits. I am eligible for a VA mortgage but hasn't been very beneficial compared with other types of loans. And I can be buried at a VA cemetery with full military honors.

If I do become very poor I could qualify for VA medical benefits at that time but right now I would just rather use my medical insurance through my employer.

Outdoors6 · « **Reply #30 on:** July 05, 2016, 05:44:43 pm »

Lynn K, I think if you went to the VA with you DD 214 and requested medical services you should not have a problem using the services for physicals, there should not be an issue as far as that is concerned. And if you had any issues injuries in the line of duty bring those copies. Thank You....

Lynn K · « **Reply #31 on:** July 05, 2016, 10:31:42 pm »

I was just a cold warrior nobody was shooting at us "not much anyway". I went to the VA website and a far as I can tell I am not eligible. No service connected injuries (unless maybe hep c)

I don't need VA medical as my job has very good medical insurance so they let those who were injured or can't afford medical insurance get treatment. My annual physicals don't even require a copayment. BCBS

Thanks for your service outdoors

Baxter · « **Reply #32 on:** July 06, 2016, 10:12:55 pm »

Quote from: morab on July 01, 2016, 03:50:56 pm

Michael, I have 3 friends who did Harvoni treatment with NO symptoms at all! They never joined the forum! Most people get through this just like that! Keep us posted!

Baxter, good to see you posting and thanks for helping me get started that day not so long ago when I first began tx.! I am counting down the days and have 8 left to go! I have been undetected since 4 weeks into tx! Beginning to see the light at the end of the HEP C tunnel.
We will see many of us graduate this year!
Morab

Morab, I'm really glad if anything I said was able to help you in any way, and thanks for letting me know. Man, we've both come a long way in the last few months, haven't we? I'm 3 weeks post treatment now, and just a couple of months from the 12-week blood test. Feeling very confident; I still feel incredibly healthy, and with each passing day, it seems more and more unlikely that the virus is alive. Hard to believe I would still be feeling this good if the virus was running wild again!

Oh, and by the way - I hate living in the South too. And, yes - one of the reasons for that is that the medical care does tend to suck down here. Thank god with harvoni, all you need is the pills. You don't usually need any particularly skilled doctors; all they need to do is sign the prescription.

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Author Topic: Plan on starting Harvoni treatment in July. I have concerns. (Read 20660 times)