therapy wanted

[notalone123]

Inasmuch as I started on a 12wk Harvoni treatment (aka the $1k pill) on 11/14, I am really posting for support. I am computer literate but very reclusive about posting anywhere on the net. I am 1b and my hepatologist has told me that my viral load has been as high as 9 million. After the holidays he added 6 tblts daily of 200mg Ribavirin (more side effects). I call recall a very infectious specific incident in the early '70s involving 4 paratroopers, 1 an experienced user, and the other 3 (I among them), plus a shared needle and a street drug. That means that I have potentially had hep c for over 40 years. It first came to my attention in 89 after hernia surgery. They bluntly told me then that I better get my affairs in order. I must be made out of titanium because I drank liberally throughout those years. I am currently not drinking which brings me to my point. I am depressed. I do a lot of cardio and weight training, as I have exercised faithfully throughout my life, but now I am out of breath. My mind feels fogged over as if I'm experiencing the onset of Alzheimer. I get confused sometimes. My legs get unusually tired, and I have trouble sleeping. I feel congestion in my chest and my eyes itch, and I'm way too irritable. I feel like my blood pressure is up as well. I hate being on this treatment program but I realize the alternative. I stumbled on this blog and thanks to your entries, I know now, (pending a checkup), that all of you are experiencing and sharing what I'm going through. I'm still depressed but I can suck it up and hope because you guys have been there before me. Keep posting, and I wish each and every one of you remission forever.

[Lynn K]

Hi Notalone

Great name as here you are not alone. I am very surprised you were on just Sovaldi there is on regime I can think of with solo Sovaldi. Do you know your genotype? Has the scaring of your liver been evaluated by either a fibroscan or liver biopsy? I guess what I am asking do you know if you are fibrosis score F4 aka cirrhosis?

The ribavirin can make you feel extra tired and weak because it can lower your hemoglobin levels. Many with hep c complain of brain fog but if you have cirrhosis worst case it could be the beginning of hepatic encephalopathy but lets hope for the hep c brain fog.

I was in the service in the late 70's and likely contracted hep c the same as you in 1978 or 79. I found out in 1990 when I donated blood.

Anyway airborne, hang tough I know you can do this and we will be here for you when you need us.

Blue skies

[notalone123]

Hi Blue Skies,

Airborne! Thank you for your response. My time with the 82nd was among the signature experiences of my life. A shared experience of that intensity truly does make for a fraternity of soldiers. Sorry for the delay in responding. I kind of slipped back into my funk after posting. There is a uniqueness to this disorder as it relates to baby boomers since it was discovered so late. For me it was a 'chickens coming home to roost' kind of reaction. I was going to delay my response until I confirmed with my doctor as to my genotype and fibrosis score but your feedback and perspective was truly helpful and I decided not to wait on my response. On 10/02/14 part of my lab result,  hcv rna pcr, quant was H 9700000 iu/ml. Two weeks after starting Gilead Science Harvonie (90mg ledipasvir / 400mg sofosbuvir) tablets same reading was <15. Also ALT previously was as high as 310 and afterwards show normal range. For some reason they started me on 200mg Ribavirin 6 pills daily. I suspect that it was to accelerate the cure because harvoni with ribavirin research showed that it still maintained a >90% success rate and cured in half the time. Same lab reading on 01/12 after starting Moderiba (rivavirin) showed <1.18 but with the previously unseen notation, hcv rna, Not Detected. I see my doctor next week to evaluate these results. If it's a cure, that's great because adding the ribavirin completely crashed my mental makeup. But if this brain fog remains I'm going to be very concerned. Sorry for the lengthy reply but you are the only one who responded and you basically threw me a life preserver. I greatly appreciate that and I can tell you I will pay it forward with similar encouraging posts on this site. Thank you and I hope you have this condition behind you or are well on the way towards accomplishing that. Airborne!

[Lynn K]

Yeah I didn't jump in the service just a leg tank mechanic. I do jump now but civie style for fun and laughs at my local DZ.

So yeah I am guessing your doc being proactive gave your treatment a boost with the Riba so that is a good thing you doc is taking good care of you.

UND just means below detectable levels withing the tests ability to detect the virus. That is why we don't stop taking the meds at UND but continue till end of treatment as prescribed. I was UND at week 4 but with my history I am taking Harvoni for 24 weeks and we added ribavirin as soon as it was sent by my insurance so beginning with week 9.

The proof of cure is if after you stop treatment you still are undetectable 12 weeks after stopping meds which is called SVR 12 or sustained viral response at 12 weeks post treatment or EOT.

So did deep Airborne every day all the way  Hoo rah

[notalone123]

Civie style, for fun and laughs you say? You've got way too much guts. If I'm not attached to a static line, I don't jump. Hope you're doing well. Me, as of recent, not so much, which is why I'm delayed in this response. As I said, I am a little reclusive but you keep coming back at me, so I'll try to ante up replies. I have more to add to my profile. I am genotype 1B, and my firbrosis score, much to my dismay, is F4/0.18. Additionally, as of today, I'm told that I've had a relapse and they've extended my treatment program, to include the butt kicking ribavirin. I like to write. I'm trying to get a work of fantasy from the editor's desk to a publisher/agent, and my writer mindset sees these circumstances in slow motion, with the earnest efforts on my behalf from multiple parties, and the meds working hard to eradicate, and well meaning family/friends pumping me up with positive thoughts, but in the end.....? I told the doctors office that the ribravirin is altering my emotional state, so take the aforesaid wa wa poor me with a grain of salt but I could use some of your sky diving guts. Anyway, it's simply a matter of perspective and that's why I'm on this blog. I get big doses from you the the others. Thanks for your attention to my progress. More updates to follow. Airborne! 

[Lynn K]

Guts nah maybe dropped on my head as a baby too many times lol. Reply if you want, when you want, if you want, no pressure. I am just cheering you on even if I don't hear from you. Better to focus on your real life and real tasks at hand.

Many have experienced emotional difficulties on Ribavirin you could and probable should consider asking your doctor if you could be prescribed an anti depressant if you want although they have their own set of issues as well so that choice I leave to you and your doctor. Hopefully others may have suggestions on what worked for them on treatment.

I have faith in you

All the way Airborne all the way!

[kate0b1]

hi notalone, riba is a tough med there are a ton of us on here who are either on it or were on it in the past so lots of support. you don't have to post if you don't want, just follow along with the rest of us 

kate

[zeena]

 hey airborne.
      I too had a strong reaction to riba. Now that I have been off of it for 3 months there is a kind of new me emerging. Before the meds I seemed to be catching up all the time, not able to take charge. Too tired,then the meds happened and I took some fmla time. I am the financial and emotional support for my husband and son, not too much room for mistakes here, so under riba...You must forgive yourself during these days under meds. It is frustrating I know, which would come out in loud bursts, towards those expecting me to be o.k. when I wasn t,my son dubbed me as bat shit crazy. Before meds I also got fortitude from my nightly wine.I needed to go to a treatment outpatient to help with that and it was great.See if there is one near you. Shop until you feel the right fit.It  gets better and when the riba leav
es your system and it does, your mind is clearer than ever.  good luck!!