bluegene wrote:

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Once again, I stand by my guns-- relapse or failure after tx on OS is not attributed to the OS  combo itself or to a persons individual physical makeup. Its attributed to one of the 4 catagories I posted earlier.

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Your guns are shooting blanks.  No such thing as a perfect drug with 100% success rate and 100% safety profile with no side effects.  I can't imagine why you would believe there is. Unscientific and unrealistic.  

Clinical trial results (especially with 13 people!) are not the same thing as real world results if that is what you are basing your opinion on. 

Fireman Rob wrote:

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Lol-I stand corrected. You're right, I had a typo and was using my tiny phone screen when I put that in. My BMI is 16.5- 17 after measurements and basic calculations. Average for my height and weight is 18-24.

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After thinking about it for a minute I assumed you were thinking of your body fat percentage and you accidentally typed BMI.  

11-12% body fat would be lean and consistent with a very fit and muscular person.  With a BMI of 11-12 you would be string bean; not capable of a fireman's duties.  As far as I'm concerned you are still a lean machine and we know you are strong like bull  :)

Just one last note before I sign off for evening... the riba/peg with or without any combo of oral drugs has a cure rate of about 50%. Sovaldi bumped that up substantially but it still falls short of a near perfect 100 like the OS combo alone. In addition is the fact that all who take either riba or peg or both suffer indelibly and in many cases permanent damage to other organs ,particularly kidneys. Enough damage to where a second treatment was previously forbidden until Sovaldi came along. I cant imagine why anyone would promote those 2 draino of drugs--riba/peginterferon. Once again, I stand by my guns-- relapse or failure after tx on OS is not attributed to the OS  combo itself or to a persons individual physical makeup. Its attributed to one of the 4 catagories I posted earlier.

Lol-I stand corrected. You're right, I had a typo and was using my tiny phone screen when I put that in. My BMI is 16.5- 17 after measurements and basic calculations. Average for my height and weight is 18-24.

Theres your answere to the side effects of your tx. How are you even alive with a BMI of 12??  The average person at 6ft. with a BMI of 12 would weigh about 100-110 lbs...or do I stand to be corrected?

Bluegene:

I'm glad you like your O/S (at 9 days in).  Let's see how you feel at 90 and then 3 months later.  No hepc tx is without side effects.   May all of ours be minimal and result in SVR.

Lol- all good, Isis. Before my dx I was training really hard. Now that I'm on a near plant based diet, my weight is falling off to the point where my coworkers are always commenting about me being too thin and I'm actually uncomfortable with it.

I went from a lean 185 to 162 lbs. since March and I'm 6' 1". That's what happened when I went from Six to zero protein shakes a day. Ha ha.

My wife keeps telling me I need to gain my weight back. Hopefully this is the end of my HCV after tx so I can get back after it.

Too funny. Thanks for the good laugh!

Happy Pioneer Day!

Fireman Rob wrote:

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I also have a BMI of 11.5 to 12 percent. 

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 Good lord, you must be a lean machine.  Pure muscle.  Don't worry; I'm old enough to be your mom.  Just find this interesting.  lol

Bluegene,

You won't find many people that live healthier lifestyles than me and I've have plenty of side effects on S/O. drugs affect everyone differently, plain and simple. I also have a BMI of 11.5 to 12 percent. An explanation for sfx would be great. My diet is clean and organic too!

Respectfully,

Rob

Hi bluegene,

To suggest that Sovaldi and Olysio don't have side effects is fanciful. A list is available and more will be added.

No Phase 3 Trial results for Sovaldi/Olysio have been published. Doctors are using this combo based on the tiny patient numbers of the Cosmos Trials.

Patients do not choose whether to add Ribavirin. That is up to their doctor's whim.

Whether 12 weeks is enough is still not established, particularly for Geno 1a, and for those with the Q80K polymorphism.

Some patients do have problems with Riba and Peg. Many don't. They will continue to be the backbone of HCV treatment for many years, in many countries.

To begin with, if you, (and everyone on the O-S tx) are taking riba and or/ peg with the OS  than no further ado is needed to elaborate upon the whys and wherefores of side effects and symptoms. The obvious is belabored. Your nightmare is the riba/peg per se. On the other hand, if your taking the Golden OS alone and still experience some bad side effects/symptoms Id bet 10-1 odds your in one of the following catagories:(a) taking other meds for other illnesses (b) smoke/drink (c) eat ANY foods that are processed, frozen packaged, canned, high sodium/potassium, nitrates, hydrogenated anything, boxed (like 'fortified' cereals),soda/sugary drinks, candy bars, etc. etc.  (d) suffer from a per-existant chronic condition which is substantially affecting some other organ thereby placing a heavy tax burden on the already overburdened liver. The Olysio-Sovaldi clinical trials, all 3 phases, are conclusive beyond debate. The tx is well tolerated with near zero side effects for those who care for their physical health. This includes bottled spring water from a reputable source/supplier. Exercise within one ability. And above all else a liver-friendly diet 24/7: fresh produce along with organic, non-processed protein sources. Complex carbs, not simple carbs, and high quality protein such as chicken white breast. Delete the spices, salts, sugars, certain oils, saturated fats. Increase the good fats (mono and poly). Take care. Bluegene.

Hi Rob,

Your description of the symptoms sound very familiar. I experienced the same problems with my eyes and the discomfort from bright light exposure. It's vitally important to care for your eyes throughout Tx and afterward. I'm also developing severe problems with arthritis and joint pain. I'm about 8 months EOT and the arthritic problems are really a problem. The only thing they've done thus far is to keep me mobile as pain permits and about 1600 Mg/day of Naproxen. I'm not a big fan of these anti inflammatory agents but being able to move is kind of nice too. I'm hoping that time will help reduce these issues for everyone affected by them. Of course I was on the old SOC's, so the outcomes may be entirely different. But I've seen a lot of similar sun issues when Riba was part of the protocol. Those of you on Riba and Olysio together should compare notes to determine how your recoveries may progress. 

Keep your chins up and your attitudes positive! Your outlook really helps to brighten the future! Good luck!

Tig

That is right in line with what I had during my rapid viral response RVR , not so much the joint pain though or the eye's burning, it was light. I think that is due to the Aloe Vera Juice I was taking the year I was waiting on Tx; because of the FDA. You can not take this wile your on Treatment,

I love it......another Leonard cohen fan!!!!  I've been a fan as long as I can remember,,,,

my doc was very firm about staying the course and finishing,,,,and I will do it,  I want SVR.  I want it for all of us....everyone.  it's still not as bad as the interferon ribo.....if I hadn't gone thru that, it'd think this was really bad.....but...I can do this.

Rob, I too have been experiencing arthritic and muscular symptoms after failed tx.  My knees pop every time I get out of a chair, and the muscular issues in my legs have returned.  I kept a bottle of Systane eye drops next to my bed, and one at work which seemed to help the eyes.  The eye problems have gotten better after ceasing treatment.  In general symptoms of arthritis are appearing in other joints and back as well.  I started taking Glucosamine/MSM a couple days ago hoping this might help?  I had headaches to some degree pretty much through treatment and photosensitivity.  Tried to stay covered or out of the sun while on tx.   Hang tough, you are doing the right thing. 

Time flies when on treatment.  In a few short weeks it will be over and your probability for SVR is high.  Keepa go, and look forward to being free of this virus. 

I want to post this so others can see what this tx can bring that hasn't been widely reported and probably occurs in only a select few of us.  The side effects I'm experiencing six weeks in on S/O are as follows:

-Extremely sensitive eyes, to the point of constant irritation and itchiness.  If I even think about touching them, they turn blood red.

-Joint pain and muscle stiffness.  I feel like I'm getting arthritis in my knees and wrists.

-I'm much more irritable and short with people.  I'm not an emotional person and I have been the last couple of weeks.  Add anxiety also.

-Photosensitivity.  Being in the sun for more than 10 minutes makes my skin sting.  This is weird!  Sunlight bothers me and my vision too.

-Occasional headaches that only go away with sleep.

-Extreme fatigue that is off and on.  Some days are better than others.

-Decreasing spurts of mental clarity.  Some days I would forget my own head if it wasn't attached.

This is probably on the more unlikely scenario list for most of you considering this tx but I find all of this really ironic since I'm so young, eat well, and I'm very active and have likely had HCV for only 10 years.  These things can and do happen with this combo.  luckily my CBC and CMP blood work are looking good or I would really question this. 

Overall, I can't complain because I'm not stopping and I'm still working a very physically demanding job.  Maybe this is why I'm having these sfx?  Anyway, I can't complain about paying the bills on tx.  It's all I could ask for really and I still feel blessed that this is doing the job it's designed to do.

Take Care Everyone!

Hi Mary,

Sovaldi/Olysio is doing the same thing to me.  It's not the joy ride most were expressing before I started. LOL- That said, you're almost done so don't quit!  This tx is making me feel like an old man and I'm only 32 with an extremely active lifestyle.  I'm just glad I can still work (most days).  It seems like I have days where I feel fairly well but others are really becoming challenging.  The sad part is I still have six weeks left and every day seems to go a by a little slower.

I find exercising when I feel the worse seems to help the most, in addition to drinking about three liters of water per day. 

I just hope I'm not developing arthritis because of this!?!  My joints were fine before this. Now I can barely do pushups without my wrists screaming STOP while the popping noises commence!  Hang in there, all this craziness will likely go away when we're done...  We're in this til the end and it will be worth the short term challenges. 

Hang in there, Mary...  We're going to beat this for good!

-Rob

Hi Mary:

Your doc might approve some Ibuprofen to help you through this.  Heat helps me with aches and pains.  Don't know what I would do without hot baths and Thermacare heat wraps.  

You will be riding again soon; I'm sure of it.   Have a listen to this song called "Ballad of the Runaway Horse":  

https://www.youtube.com/watch?v=5BD7CFwiIsI

Thanks everyone,,,,...I know we all have our trials and hard times....and good times and joy...I will get through this.  I think it's surprising my family the most,,,I've been so good and now it's surprisingly tough.  It's still a walk in the park compared to interferon and ribo,...and I know we will reach SVR.  all of us......as we say in horses,...time and miles...time and miles.

In on week 4 of the Sovaldi/Olysio treatment with riba.  My blood counts are a little off so I am dosing down on the riba.  I have has some difficult symptoms, but NOTHING like the peg/interferon treatment.  I did my second set of blood work today so hope to have my counts back tomorrow and viral load on Friday.  Praying for clear!!  I am experiencing headaches, all over joint pain and fatigue.  I hate to even list it, as it so much better than the last treatment. 

Hoping for good news on Friday!

TazKat wrote:

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Hang tough!! if I can do it, anybody can.. :)

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Hang tough!! if I can do it, anybody can.. :)

Mary, sorry you're feeling rough.  Keep focused on EOT and the prize.  Hoping to see SVR in you future.

I'm starting my last two weeks of S/O......I feel like I'm being poisoned.  I was feeling great for a long time,,,,with the exception of the side pain, in the middle of the treatments.  Now I feel like every joint, and all my muscles are screaming,,,,,I'm exhausted and can't sleep with the body aches and pain,,,,so only two more weeks,...

it feels like theres nothing left for the meds to do and they are going through me fighting everything,,,,I look at it as one last scan,...one last attack....

my brain is still very clear and sharp.....countdown,,,,

Congrats and best of luck, Audrey. Looking forward to the good news coming on those test results. 

Hey Audrey,

Congratulations and a job well done! Enjoy the start of your Hep C free future!!

               WOOT.

Hey Audrey

Congrats on making it to the end of your treatment, wow that went fast.

Now ! Relax, sit back and strap it down

matt 

Two weeks down and ten weeks of treatment to go. 

I have more energy and the fog has lifted.  I spent all day yesterday in my workshop, and I felt good at the end of the day.  If I did that 2 weeks ago, I would have felt like I was hit by a truck.

The insidious part is that the symptoms had progressed so gradually I did not realize how much they were affecting me.  I see now that I have been attributing too much of my decline to age.  No, I don't feel like I am 20 again.  But I do feel better than I have in years.  This is an unexpected gift!

Outstanding Audrey! Wishing you the best of luck for SVR! 

Well done, Audrey.    Wishing you the best of luck for SVR!

Congratulations and good luck Audrey! 

- Tom

Congratulations Audrey on finishing tx.  Hoping and praying this does it for you.     I was able to get back in the sun a week to 10 days after eot without much problem.  Keep us posted on your progress.  Good luck, and be well.

Good Luck, Audrey!

Congrats on finishing tx. My fingers and toes are crossed for you as I'll be in your shoes in six weeks. Be brave and know we are all pulling for you.

-Rob

LOL! Thanks Huey.

I just pushed the LUCK button,,, I have to warn you though, this doesn't work with the lottery lol

Well, tomorrow is my last dose of the sovaldi/olysio. Guess I can get bloodwork tomorrow afternoon? Wish me luck!!!

Yes it is the virus,, you see the virus likes certen kind of cells better than others and off these liver cells are the best, but muscle and bursa sacks in our joints also have a lot of what the virus likes, so the virus gets into those parts of the body too.

I get what I call "flare ups",  when every joint in my body aches.  It's all I can do to get out of bed.  I did all of the arthritis tests, and they all come back negative.  They are so intense I am forced to take pain pills, just to function.  I have been told it's the hep C.

Hey TC

Congrats on achieving UND in only one week.

Your higher Bilirubin levels are most likely due to the Olysio as Protease Inhibitors have been known to raise these early in the treatment but commonly reduces later in the weeks to come. Do you know exactly what the reading is? Sometimes if their extremely high they will monitor you very closely and may adjust your dose.

As far as effecting your outcome not likely if you can keep up your full dose.  BTW are you also taking Ribavirin?

matt

Hi TGC,

After my four week blood test I can see the same thing happening to me. This is normal for the meds to cause higher Bili and decreased red blood cell counts. Pretty sure this is the effects of Sovaldi that causes an anaemic effect on your body.

Levels will return to normal after the tx and your red blood cell counts shouldn't drop too low. That's an impressive VL reduction in such a short time frame! It looks like you're responding well.

Others here can probably offer more insight but I wouldn't worry. Keep us posted on your clinical trial and feel free to add the details of your condition to the signature line so we can all compare notes as there are a few of us on this same tx.

Good luck!

I'm in a clinical trial - went from 8mil viral load to 15 in 3 days, UND in 7 days so I am an early responder to the S/O combo.  The trial coordinator said I had high bilurubin the past two times she took my blood (3 weeks, and 4 weeks).  Anyone know if this is a bi product of the combo?  I had Cholestatis of pregnancy with both pregnancies which is the bodies inability to process bile but I thought I got that because I had Hep C.  Now I am confused.  Anyone know if the high bilurubin, if it doesn't go down, will cause me less chance of achieving SVR?  

Thanks Gatorman!!!

Outstanding news, pl1952. SVR will be just around the corner!

Thank you, Matt, for the good wishes!  :)

Hey PL1952

Congrats for your Hubby, that is a really important test to clear, tell him we all are very happy for him as it just has increased his percentage of SVR on ton.

matt 

Hey tom.....with the first week i felt more energy....and slept better.....two weeks later my brain went clear....I had extreem side pain but it's gone and I feel like a new person,  these meds have changed my life.  I was undectectable at 4 weeks and have 3 weeks 2 days left of the S/O.  I cant even tell you all the ways my life is different....it's amazing and I'm ready to start the rest of my life with gusto!

My back ache is almost completely gone.  I stopped taking the medicines for my back yesterday.  I guess the doctor was correct -- not related to the Sovaldi/Olysio.  I plan on reducing the weight I use for my workout just in case.

I am now a week into the treatment, and I am starting to feel much better.  I have had no side effects, other than possibly the thing with my back.  I feel like I have more energy.  I am not sure whether it is a physical change or my stress diminishing now that I am actual able to do something about this disease.

I have also lost my HepC "tan".  I am so pale now that I resemble the Pillsbury Dough Boy.  My AST and ALT (usually 2x to 3x normal) were not that high, but apparently enough to affect my skin color.

Thanks Greg!  I hope you'll be joining me, Isis and the others come October.  We're gonna beat the living hell out of this virus, once and for all!

Lot's of good news here, congratulations to all.