Finished 12 wks of Harvoni Jan 8 and not feeling good

[Hepsub]

101 fever typical!!! jesus I'm so sorry kim... Yea something seems like its going on, hopefully its just a delayed response from your body.....Do you take any supplements or herbs for immune support? What about your diet? Im sure you've heard these questions a million times but just out of curiosity form someone who has just seen a functional medicine doctor to address my neutropenia.. what exactly were your WBC markers if you don't mind sharing? Maybe i can bounce them off of my doc as hes pretty brilliant (literally not just an expression of admiration) . Can you, in a few words, re summarize your theory, if you have the time and it pleases you to share (again just curious, thirsty for info from other patients post treatment)? Im 23 days post treatment and a rash i had pre treatment and not during treatment has returned.   In the last couple days I've also developed a "malaise" or what feels like a mild viral infection (phlegm in back of throat, sore armpits, muscles) that is disturbing me and making me start to really believe the hep c has returned.  Hope your feeling better soon...

Pz


P.s.
If all else fails have you every seen a homeopath? The field is ripe with con artists and opportunist but as a skeptic i can through experience, attest that if you can find a true practitioner, there is something to it.. What about acupuncture? Sorry if you've addressed these things with other members on the forum in the past, I've only just arrived this year.

[KimInTheForest]

Hi Hepsub. I think I will refrain from big discussion of my theory about my 9-month-long post-treatment health crisis until I  know more. But basically it ties into the news/hypothesis presented last month at ILC2016 in Barcelona that Harvoni and other DAAs may inadvertently disable the body’s immune surveillance by reducing inflammation so rapidly, thereby allowing cancer that had been latent and under control to manifest during or shortly after treatment. The studies referenced at the ILC pertained to recurrence of liver cancer in patients while on the DAAs. But the hypothesis about the DAA’s effect on immune surveillance could perhaps extend to other latent cancers or cancer precursors that had not been causing us trouble pre-treatment but flared up into full-blown active disease process as a result of the body's immune surveillance being disabled.

As for my now "critical neutropenia" - my neutrophils are now 0.5 (ref range: 2.0-7.5).

White Blood Cells - 2.8  (ref range: 4.0-10.0)
Hemoglobin - 108 (ref range: 115-155)
Platelets - 94 (ref range:150-400)

Lots of other stuff out of range too. Will post more details as they come in.

kim

[FutureThinker]

Kim, I am glad to hear you are using all your resources to get this figured out. Don't hesitate to get even new opinions. I remember hearing last year about a movie star who had to go to SEVENTEEN doctors before the correct diagnosis was found!!!!  17!!!! She had some rare disorder I'd never heard of, but the point is, keep searching until you get to the answer.  You beat HCV, a major accomplishment -- keep asking until you are satisfied and feeling better.  Keep us posted, FT 

[WholeFoods]

I just wanted to vent a bit... I'm a year post tx and still suffering debilitating fatigue triggered by the least bit of stress. I've been so frustrated lately as it seems for the past couple of months people are coming out of the woodwork wanting me to do things for them, even despite the fact I continually tell them I'm overburdened and exhausted. What is it with people that won't go away and leave you alone?! It borders on outright rudeness and feels abusive to me. This is happening at work and at home; coworkers, bosses, neighbors and family. To make matters worse, most of these people don't help me when I ask, they always have an excuse. I used to be mostly dependable, so I can see how it started, but things have changed for me and I'm struggling now. I tell people this, but they act like I'm lying. Or maybe they want me to struggle for some sick reason. I'm about to get rude and tell these people where to get off. Thanks for letting me vent.

If anyone else here is struggling like this and has found a way to deal with it, please let me know. Thanks!

[Katie]

I just wanted to vent a bit... I'm a year post tx and still suffering debilitating fatigue triggered by the least bit of stress. I've been so frustrated lately as it seems for the past couple of months people are coming out of the woodwork wanting me to do things for them, even despite the fact I continually tell them I'm overburdened and exhausted. What is it with people that won't go away and leave you alone?! It borders on outright rudeness and feels abusive to me. This is happening at work and at home; coworkers, bosses, neighbors and family. To make matters worse, most of these people don't help me when I ask, they always have an excuse. I used to be mostly dependable, so I can see how it started, but things have changed for me and I'm struggling now. I tell people this, but they act like I'm lying. Or maybe they want me to struggle for some sick reason. I'm about to get rude and tell these people where to get off. Thanks for letting me vent.


If anyone else here is struggling like this and has found a way to deal with it, please let me know. Thanks!

There is a word I never used for so many years and have found it to be useful.....NO.  You can and should say no and actually, you don't even need to explain if you don't want to.  People will take advantage and I am fortunate in that I am at the point in my life where I can be a recluse very easily.

I don't mean to imply that I have turned into a callous uncaring person as I haven't but I am very selective and have pretty much weeded out the negative takers in my life.  They keep popping up, here and there, but I spot them quicker these days.  Good luck with that as it is a difficult lesson to learn.

[KimInTheForest]

I just wanted to vent a bit... I'm a year post tx and still suffering debilitating fatigue triggered by the least bit of stress. I've been so frustrated lately as it seems for the past couple of months people are coming out of the woodwork wanting me to do things for them, even despite the fact I continually tell them I'm overburdened and exhausted. What is it with people that won't go away and leave you alone?! It borders on outright rudeness and feels abusive to me. This is happening at work and at home; coworkers, bosses, neighbors and family. To make matters worse, most of these people don't help me when I ask, they always have an excuse. I used to be mostly dependable, so I can see how it started, but things have changed for me and I'm struggling now. I tell people this, but they act like I'm lying. Or maybe they want me to struggle for some sick reason. I'm about to get rude and tell these people where to get off. Thanks for letting me vent.

If anyone else here is struggling like this and has found a way to deal with it, please let me know. Thanks!

I hear ya, Whole Foods. I have been in a similar place for far too long now post-tx. I agree with Katie's suggestion of the power of "No". I have been saying "No" for so long with this post-tx malasie, that people have quit asking. But for me, I also have to say "No" to myself, and that is the hard part. There are so many things I want to do and want to set in motion. But I am not able to follow through at present. So I have to gear down.

Am continuing to see doctors, get tests. No answers. Am about to start an alternative therapy that I am hopeful about. Worst case scenario is it will have no effect. From all I have read, I don't think there is any chance it will do me any harm. So... not much to lose, really. Would give anything to be back to the level of health I had before I started treatment.

kim

[Katie]

Acupuncture, if you can find a true healer, can help immensely in "opening up blockages" where your energy isn't flowing and help everything function better, including you immune system.  I don't know how it works or why but have been having pretty regular tune ups for the past 10 years and contribute it to my overall good health, which for my age, or any age for that matter amazes doctors.

Wishing everyone healing grace and wish the best for you!

Katie

[KimInTheForest]

Acupuncture, if you can find a true healer, can help immensely in "opening up blockages" where your energy isn't flowing and help everything function better, including you immune system.  I don't know how it works or why but have been having pretty regular tune ups for the past 10 years and contribute it to my overall good health, which for my age, or any age for that matter amazes doctors.

Good suggestion, Katie!

kim

[FutureThinker]

Kim, you've been in my thoughts and prayers this week, and it sounds like you're feeling a little more positive.  I really hope your plan works and you are feeling better soon.  Let us know how this works for you -- Take care, FT

[Luna7]

WholeFoods, if I can put it bluntly, I think these people just got used to sucking on you and it's time to shake them off!  Once they are in that role they don't let go, and you may need to find new people to relate to.

I used to be such a caretaker, and even majored and worked in the Social Work field awhile, but decided I don't like that role. Now when I give to others I'm very clear about why and it's because I really want to give to them.

I had to shake my brother off and it was very hard, because I really wanted to have family in my life. But I noticed he asked me to do all sorts of favors for him but when I asked him for help it was always 'sorry I can't'.  Well, sorry I can't have you in my life. I'm sounding a bit flippant here, but it was very painful to accomplish. I finally realized that I don't want people in my life who don't care about me, and perhaps I wasn't really loving myself, but often helping people because on some deeper level I thought it would make them love me.

I have no idea if any of this is what's going on with you -- am just sharing my experience with this dynamic.

[Katie]

WholeFoods, if I can put it bluntly, I think these people just got used to sucking on you and it's time to shake them off!  Once they are in that role they don't let go, and you may need to find new people to relate to.

I used to be such a caretaker, and even majored and worked in the Social Work field awhile, but decided I don't like that role. Now when I give to others I'm very clear about why and it's because I really want to give to them.

I had to shake my brother off and it was very hard, because I really wanted to have family in my life. But I noticed he asked me to do all sorts of favors for him but when I asked him for help it was always 'sorry I can't'.  Well, sorry I can't have you in my life. I'm sounding a bit flippant here, but it was very painful to accomplish. I finally realized that I don't want people in my life who don't care about me, and perhaps I wasn't really loving myself, but often helping people because on some deeper level I thought it would make them love me.

I have no idea if any of this is what's going on with you -- am just sharing my experience with this dynamic.

Well said!  Exactly my story too and I like the bluntness as it is just how many people are...living in their bubble without any consideration for those around them  Shake off the takers and your stress level improves.  Stress is a killer!

Enjoy this wonderful day in May and take care of yourself first!  That isn't selfish but will allow you to help others around you who deserve it.

Katie

[fourlocos]

Hi
I have been reading this forum for over a year now and decided to finally post.  I am 16 months post treatment with Harvoni.  I also started having problems about a 10 days into treatment.  And I have lived in pain since.  Mainly my feet and hands.  But joint pain travels daily.  Nerve and joint pain in my feet is off the charts!  I have been a specialist and they thought it was RA only to find with more tests and ultrasounds that it isn't.  They feel it is damage from 40 years of Hep C that I never knew I had.  I have swollen lymph nodes in my groin area here and there as well.  It feels like my immune system is messed up.  I am tired, foggy and have headaches almost everyday.  I want my old self back!  Wrinkles on my face that I never had before mainly my eyes.  I feel like I am 90 years old.  I still work and I walk 2-3 miles per day besides an active job.  But I feel like crap!!!  Here is a link for you all.  You can look up your liver doctor and actually see how much money they have gotten from Gilead and other drug companies.  Just put in the doctors last name and city/state.  It is eye opening!  https://openpaymentsdata.cms.gov/physician/118282

[morab]

fourlocos
That is very enlightening information. My GI specialist dropped me after getting me Harvoni. NO followup, no lab scheduled, no returning my calls, no counseling!
Yet he seems to have made over $35,000 in 2014 from big Pharma.
My GP thought that was illegal to take money like that because he doesn't.
Eye opener.
Morab

[fourlocos]

And we haven't even seen the 2015 results yet!  Harvoni had only been out three months at that point.  My doctor was as bad but I have seen others report that they were shocked by the numbers. 

[morab]

fourlocos
It doesn't tell you on that site exactly where the money came from unless I missed something but yes, since that was just for 2014 and Harvoni came out in October of 14?
That is alot of money. I have a friend who still can not get ins. to pay for her to get the drug here in the US. And Gilead does not care at all. They only want to treat those in really bad shape.
What a disgrace!
Morab