Hep C Discussion Forum

Hi group I'm starting my 7th week on S/O and viral went from 13.3 mil to 40 in 4 weeks now zero but the sides are starting to get worse . I have rapid heart rate when I get to hot under my covers but I'm constantly cold with chills all the time. Body aches and headaches night sweets can't go in the sun upset stomach nasty iron like taste in my mouth insomnia But just 6 more weeks to go and hope this virus is gone forever.

Yes, insomnia is an ongoing problem for me too....not sure if its just a liver disease issue, tx side effect, or just to much stuff constantly going thru my mind? It seems as though my days and nights are mixed up as I'm tired all day but can't sleep at night? Who knows....to many things going on to figure that one out.

skewedButNotBroken wrote:

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I took my fourth dose today and I'm already starting to feel better. No side effects really just a slight headache that goes away when I drink water.

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 Yep, many including me could feel a change after just a few days.....in 2 weeks I'm betting you will feel much more fatigued,  not to worry it's not to severe but you will find yourself extremely tired during the day...you get used to it and then it improves thru the course of tx.....just stay hydrated and you'll be done before ya know it.

Dig wrote:

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Thanks all for the kind welcome. Day Two I woke up pretty tired, but I can certainly live with that. I was wondering though - does a high VL take longer to knock down than a relatively low one, or is that irrelevant?

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This was on the medhelp.org website from HectorSF. Note that this is Sovaldi + Riba without Olysio, but indirectly answers your question.

While previous studies with peg-interferon (PegIFN) based therapy demonstrated that early viral kinetics could help to predict SVR rates this is not the case with Sovaldi + Ribavirin treatment. 

Treatment with non-interferon based treatments work differently than previous interferon based treatments so what applied to interferon based treatments RVR, eRVR, EVR are no longer applicable. In other words... 
early viral kinetics with Sovaldi/sofosbuvir based treatment is no predictor of treatment success. 

Almost all patients achieve UND by week 4 (95%+). Once undetectable no one ever has a breakthrough while on Sovaldi. Again this is different than with interferon based treatment. Because Sovaldi has a high barrier to resistance. So the only way patients fail treatment is by having a Relapse after they stoptreatment. This usually occurs within the first month after stopping treatment. 

Predictors for success with Sovaldi/sofosbuvir + RBV based treatments include genotype, previous treatment experience, cirrhosis or not, treatment duration etc. 

So to sum up...Can we predict relapse with early viral kinetics with Sovaldi/sofosbuvir + Ribavirin based regimen? 
No. 

Thanks all for the kind welcome. Day Two I woke up pretty tired, but I can certainly live with that. I was wondering though - does a high VL take longer to knock down than a relatively low one, or is that irrelevant?

Hi Skewed,

It's great to hear you're starting this tx. It will be over with before you know it. Congrats!

Dig, 

Welcome to the forum. There are some really sharp minds here so feel free to ask difficult or complicated questions if needed.

-Rob

 

Welcome Dig:

Wishing you success with your tx.  Quite a few people here have been on this combo so ask away whenever you have questions or concerns.  :)

 

Hey Huey:  I just noticed it has been 3 1/2 weeks since your EOT.   Time flies.  How do you feel?  

Hi Dig,,,Welcome!!

You are right, this is the place.  I am Huey, 'real name'  and I am fresh through a 24 week treatment.  Of Sovaldi and Riba.

You need to edit your Sig to tell us about things like genotype, viral load, as you see fit, this helps us answer you and just helpful in general. once Aegean welcome.

 I think you know as well as I do that a drink always turns out to be the instant solution, followed by that almost immediate, 'tremendous' price tag. = not worth it!!!

 I too was anxious about my Sov/Riba delivery. I remember posting the following at the time of it's arrival:

 Wow, UPS just now brought my Sov/Riba. I'm about to open the box and I don't know if I'm more like a kid on xmas morning or a bomb squad technician about to open a suitcase. LOL

 Mine actually turned out to just be regular ole tablets with one type in a bottle and the other type in one of those aggravating 'adult proof' dispensers LOL. They are swallowed just like the other meds that I take, and come in similar attractive colors.

Sorry, I'm being a smart a**. My point is that there's nothing special about the medicine other than the fact that the schedule needs to be adhered to, in case you don't normally do that with other meds you take or have taken.

 You'll be fine... Happy 'Tx ing'

EDIT: grammar

-- Edited by wmlj1960 on Wednesday 3rd of September 2014 03:35:07 PM

I just got a call from Skyemed pharmacy and my meds will be here on Friday. I'm so nervous that I feel like I need a drink. I know this is crazy but this is me.

my saying these days.. "all this shall pass" u will be almost new again.. lol hang in!!!!

skewedButNotBroken wrote:

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Mike,

I have not started treatment yet. This is how I feel now, so all of this is how hep c makes me feel.

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 Ouch!!!

 Then my lack of understanding the severity of the Sx's of HepC that you and many others feel may lie within myself, and my lack of self awareness.

 I can identify with your symptoms: (feeling toxic, joint aches and pains, declining vision, low energy level, easily irritated and lack of concentration). But I tend to spred the causes of these among several of my other medical issues, and also being the result of my past 'self-abusive lifestyle'. I have no way of knowing what is due to HepC and what is due to other causes. And some of these pains etc I have had so long that I've kind of come to accept them as 'normal'. Kind of like I don't acknowledge them as being present. They may slow me down and cause significant pain in given situations on a daily basis, but usually non of them are severe enough to stop me from accomplishing what I need to accomplish, although that may require more time or alternative techniques. My main point would be that I spend very little effort on what's needed for pain management in order to make it through the day, and keep my sanity in doing it. If that makes me different, then I'm okay with it. It's certainly better than a feeling of suffering from day to day, for which I feel sorrow for those of you affected in this way.

 Come to think of it, I suppose that, to my credit, I can identify one set of Sx's I experience daily as being a direct result of HepC - decompensated cirrhosis ONLY. Last January I was hospitalized for severe abdominal pains due to excessive acites fluid accumulation within my abdominal cavity. The fluid was temporarily relieved via paracentesis, but I've experienced abdominal pains constantly, sometimes severe, since then. This is real and it is acknowledged by me constantly, so I'm certainly not completely out-of-touch with my body. I just included that to confirm that my pain receptors are not broken.

 

 

 

 

 

Hope this does it for you skewed.  I'm feeling pretty crappy after relapse, having joint pains and increased neuropathy. The uncertainty about whether insurance will pay for another round is the worst.  I guess it's just day to day.  Thankful you're getting the opportunity.  Hope to see SVR in your future.

-- Edited by Groupergetter on Wednesday 3rd of September 2014 02:43:18 AM

skewedButNotBroken wrote:

--Dzdayscomin, I feel terrible most everyday. I feel like I've been poisoned. I feel toxic. My back itches, my joints ache, I have headaches, my vision seems to be declining. My energy level is low. I get irritated easily. Most of the time I don't get enough sleep. My concentration is not what it used to be, etc. etc.

I'm really in touch with any new aches or pains, so I'll keep you informed if anything gets worse or better.

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 Wow, I stand corrected. I assume most of these are Olysio related although I suppose it could be Sovaldi too depending on the individual.

 Personally, Sovaldi has been very friendly to me. I'm a little fatigued but I blame that mainly on Ribavirin. And this is along with taking toxic HIV Rx's also. So I don't know?

skewedButNotBroken wrote:

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Well, I received official word today that my insurance company has approved both Sovaldi and Olysio WITHOUT ribavirin. They initially denied me, but Dr. Paul Martin wrote a letter of necessity and they reversed their original decision. The representative from Skyemed pharmacy told me that within a few days they would call me to verify my shipping address and that someone would be home on the day of shipment. She also stated that a specialty nurse would contact me and make sure I am educated in the in's and out's of this medication. I feel very blessed and fortunate!!!!!!!!!!!!

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 That's great Testiva!

 I initially was scheduled to start Sovaldi / Olysio but my insurance would not pay. I missed my chance to appeal and settled for FDA approved Sovaldi / Ribavirin instead. But regardless, I still also feel "blessed" and "fortunate"!

 With history of very little Sx's being reported during Sov/Oly Tx, you should have an uneventful cruise to SVR land.

Keep us updated on your progress.

 

Hi I am new here but I have just started the sovaldi/olysio combo. 4 days in and no side effects. When I was diagnosed they told me my viral count was low and there was only a 50/50 chance of cure so wait. Since then  I have been diagnosed with Congestive heart failure and at 48 need a heart transplant. Well you can't get a transplant if you have hep c. Lucky for me they have come out with this new treatment and the makers of the two drugs, Giliad and Johnson and Johnson, are footing the bill. Medicaid would not touch the cost with a ten foot pole. With my condition I couldn't even take the old meds.

So the point I am getting to is after 4 days and even with all the other meds I take I still don't have any side effects. I am a little irritable today, but hell that could just be me lol.

Good luck on your journey