Hep C Discussion Forum

A Big congratulations to you Sanuk! Awesome news.     

Sorry you are feeling yucky Razor. Do check with the doc! I don't have any VL's planned for another 11 1/2 weeks. They won't do one until 12 weeks EOT. That's ok, I know it's gone!

Never too cold for ice cream Tig! Yep, it's pretty cold here. At the start of a nice little snow storm. Expecting about 8 inches or so. Good day to stay inside tomorrow!

Our Sister, Canuck of the North, is really a gifted writer! We're fortunate to have her on our team and part of the family. I think it's time I sent her a gift card for Dairy Queen. It isn't too cold for ice cream is it? Looks mighty cold compared to my temps! Stay warm you cold weather people. 

Thanks Canuck! I do wish that I could of had more VL tests. It would of been nice to see a big fat zero next to my name. But I know its gone, so jut have to wait out the next 11 weeks or so. More waiting....     That's ok though. I have been so busy that I haven't haven't had time to think about it.

I think my hep c doc is just planning on doing the VL at 12 weeks. I have an upcoming physical with my regular doctor, so I will ask her to run those other labs as well. Yes, those WERE my numbers. The VL was over 22 million. Crazy high!     Not anymore though. Not sure about the fibroscan either. Will have to ask about that. 

Cracking me up about the past couple of weeks! Still cracks me up.

Yeah, 36 of my 56 years. Long time to feel the effects of hep c. I do feel sooo much better now. The brain fog is starting to improve and my body feels better too. It feels awesome to have this virus out !!!  The only thing is that the roof of my mouth is sore. I have had this before, so not sure if its related to anything or not. Gargling with hydrogen peroxide helps. 

36 is becoming my new favorite number!

Got to get going, have to fight with not only Christmas shoppers, but there is about 10 inches of snow heading our way. First one of the year. 

Thanks for the support. You know how to make people fell better!

. 

You got that right Ruby!

Thanks Pablo. It will be very interesting how my body reacts post treatment. If I do get pains, I won't worry. Well.... maybe a little.  

Yeah!! You did it Girl   The next 12 weeks will fly by just like the last 12   We'll be claiming our SVR status at the same time WHOOHOO!!

Ruby

Hey Razor,

Good goin'! 

All the labs, all the way they should be looking (right from the start!!). This will only be re-enforced with every lab you have, from now on.

I hear your trepidation, it is to be expected, but LISTEN to what you already know inside, what your head is telling and showing you.

Alt good, ast good, vl good, even that GGT good, and just about from day one too! You've waged the war and won!

YOU KNOW how ineffective that drug regime was 6 years ago and what it's running rate was for cure - no wonder this regime has worked SO stellar for you (AND will continue to do so)!

You got yourself the right stuff this time, and it has worked, and you got it beat now.

I have a feeling you are right, about influences of diet, (and anything else that your body may not quite be ready for) from copious meals to too spicy ones that can make your complete regain to health bumpy. I do hope you are still doing your very best to to coddle yourself with the greatest care and gentleness, on all fronts, that you know how to do. You have been through a VERY long stressful time, you still need time, after EOT to start your re-couping, in all ways. You will. 

I am so pleased for you, and proud of you, for making this epclusa cure happen. You are an inspiration for many others who deserve the best drug regimes available to them. 

Long live you and sof/vel!!  C.

It won't be long now Ruby! 

Congrats Razor on your und status! Sorry that you are not feeling that well." This to shall pass."  What my Mom says when things aren't  going well. I have found it to be true. Hang in there!

just had VL, undetected as far as the test goes <12 IU/ml. Been here before (dont want to sound negative), just hope this time i can achieve SVR. Maybe the discomfort i am experiencing is the copious amount of Indian food i have eaten this week .

3 days without pills and now incredibly tired.....also increased pain from liver region!!!. Hope to get VL result today as see Doc.tomorrow.

Oh yes Tig, a Florida vacations sounds like just what the dr ordered!  We do get a lot of fog this time of year, especially since we live very close to lake Michigan. Actually, the cold weather helps me to feel more alert. When it gets hot and muggy,that's when I get tired.Go figure. I have always wanted to live in a warm weather climate. Maybe I will be a snowbird.  Live somewhere warm in the winter. Maybe someday..... By the way, my dancing shoes are ready to go!

Hi JimmyK!

There's alot happening here! I'm so pleased, knowing you've one week left Liz. Doesn't seem like you could be this close yet. These shortened treatment times are the best! I'm sure you're excited to reach EOT and SVR12 soon after. I hope you bought polish for your dancing shoes!

I'm paying attention to the fact that both of you have mentioned brain fog. I think that is one thing all HCV patients are familiar with. I'm convinced I'm still affected by it. Could be age catching up to me too! I wanted to ask, since both of you live in the COLD North, could the fog you speak of actually be fog? Could be the cold has caused "sluggish brain syndrome". The cure for that is a Florida vacation! How's that for a prescription? Ha, ha!!

RB, thanks buddy! You stay in touch, too. We like to hear how things progress. Good luck...

Thanks for all of your support, and good luck to those of you on the last lap......

I have one more week of treatment! Then the waiting begins all over again.  The first 2 weeks went really fast and I am sure the next 12 will be the same. There are 2 things that i have noticed the most since starting Epclusa. I had pain in my lower stomach and it's gone now. The biggest thing is how much more aware i am of everything. My vision seems clearer, and the brain fog is starting to lift. So much so that I am thinking about my life the last 35 plus years and how out of it I sometimes was. Some decisions weren't the best as I let people take advantage of me, thinking I was doing the right thing. It was the right thing for them, not me. Mostly things about income, and employment. Ok... I can't blame it all on the hep c, they were my choices, but things are about to change. I can't help but wonder how different my life would have been. Sob story over! I am so grateful to my family and especially my daughter who has been awesome through everything. I don't know what i would do without her! She has been the water cop, making sure that i am drinking my water everyday! Having this forum to talk about things and hear what other people have to say has and will be a lifeline for me.It will be interesting to see how my body and mind feel after the drugs are out of my body. I am excited to see what the future holds!

Canuck - I am feeling better, but it's still hanging on a little. Thanks!

4 more to go, Yay! I am a week behind you. It sure feels good to be just about done.

I am sure those pains will go away for you. 

Next stop.... SVR!!!

Hi all,

last 4 pills staring at me, had all the bloods and VL done yesterday in preparation for the Doc next Saturday. All bloods now normal apart from WBC and Platelets, which i put down to my enlarged spleen.

Been feeling normal, no real sides, except now and again in the last 2 weeks, aching in the Liver region and some short lived intense pains on the side of my head !!!! Whatever...Que sera sera.

Should have VL result next Thursday and will update. I suppose the next thing will be an Ultra sound, and then i have to check out the 5mm nodule on my lung that the MRI showed up....so boring....Still, i am more fortunate than a lot of others.

Onwards and upwards.

Up the Blades....14 unbeaten. COYRAWW!

Sanuk,

I used to have one something like that ... sorta went, "I can live anywhere" (under just about any kind of circumstance) for XX amount of time! But I think you are right about your similar "time-limit XX thing" for "anyone can do anything" (but I do think the XX part turns out important)!!

"Walls", from pain, to tolerating the sight of blood, duress/stress/worry/anger, desperate for hope, longing for normalcy (whatever that is!) - us being tested to the limits of our human endurance seem to have very weird gumby-type lengths attached to them. Just when you think you've run as long and hard and as far you can, stretched to your limit, something gives (or breaks), and sometimes just the smallest breather, gives us a chance to don our shoes again, or, to start over barefoot.

I just gave in to whatever HCV treatment threw at me, just did it dish-rag fashion! My big wall actually came before I started treatment, I was so stressed about whether I was going to succeed in getting into my HCV trial, or not, I was embarressed when I had an unplanned melt-down in some poor unsuspecting doc's office one day. Had to go there, at their persistent pushing, for some other "technically" unrelated issue. Whilst there, I lost it, started with one uncontrollable rebel tear escaping my control (the time-control for the waiting I had been enduring ran out). Cried all the way home, but managed to start re-booting next day. Many weeks later, I found out I was going to get into the trial. That helped, A LOT!

You shoulda seen the look on that surprized docs face. She couldn't figure out what she had done, what my problem was, all she wanted was a bit of tissue from me, what's the big deal, I just muttered something about waiting for HCV treatment, stress, etc and skidaddled for the door! 

You have already endured chapters and almost the whole book, then, to have this to take care of this too - you are entitled to feeling you are stretched to your limits. We could have done without sides. 

I think your sides will decrease, you will cure this HCV, and then you will get in your trial. I found coming here helped me. I hope it will for you too, anything to make it a wee bit easier. 

You are likely not cirrhotic (according to the history you showed), if your doc thinks your liver function is OK, then maybe he will let you take some limited form of analgesia for your body pain. That might take the edge off one part of it. 

Hang in there. Let us know what he says.

(More water). C.

Hey Razor, Phoenix, Ruby,

You're all getting down to the winner wires!! Oh, these are all going to be such exciting finishes! I can't wait to see them all!  C.

Sunuk-Sunan,

So sorry for these troubles. Yes, increase the litres, despite all. Remember, you are in the initial starting period, the heaviest time people DO tend to have and report sides/complaints - I hope these pains are going to start decreasing for you soon. 

I agree with Cheddy, if you have a soon sheduled appointment with your doc, and even if you don't, then do consider seeing him soon, to discuss body pain and your options for relief. 

Some of what you are experiencing may be unavoidable, and will just naturally start decreasing as you progress through your course, and, the increased water intake should also help. It may be just be a matter of time, and a short time I hope.

You started at a disadvantage, what with your level of strength post Ca treatment, and with prior tendency for arthritic symptoms, so, with Murphy's Law applying I am not entirely surprized the sides you are experiencing, picked on you, especially in these two areas (musculo-skeletal and strength).

I don't think I read a post from you until now (10 days into the epclusa) , or maybe I missed one, but I was SO pleased to see you finally got it! If I recall rightly, they did not keep you waiting too long then? Also, what time of day did you end up deciding to take your dose, and do you take it with a meal?

Drink, drag yourself to the toilet, try to see the doc to discuss pain control options, wait, it may not be long before things let up. I agree with you, you did chemo, you will do this too. I think it will let up soon. C.

Hi Phoenix

The only thing I have to say is WHOOHOO!!!

RR

Hello! I start week 10 tonight. 3 more weeks to go!      The only side effect that I still have is fatigue. Working thru that and I hope that in a few weeks I will start getting some energy back.

Jen - I too have joint pain. Mine started before treatment and has not been any worse on Epclusa. I do drink a gallon of water a day, and YES I am really sick of having to go to the bathroom all the time! So are my bosses at work. Someone has to come in for me every time  I have to go. I work with kids and they can't be left alone, so...      Small price to pay for feeling better!!

Sinus infection hit me a few days ago. As if I wasn't tired before, it's much worse now. Going to bed very early tonight. Good night! 

UGH!! not  only do I have to pee all the time, but I can't get to the toilet very quickly.  I don't have the strength and it hurts to move. 

Tell me it will get better sooner rather than later!  I'm not sure I can manage 10 more weeks of debilitating joint and muscle pain. Ok maybe I can, but it won't be pretty.

I've gotten through cancer treatment's fatigue, nausea, bone pain, and the never ending "flu like symptoms", but this joint pain and muscle weakness is like none other. In cancer treatment I never felt disabled. Now if I don't use the handicapped toilet stall I won't be able to stand back up.  

Ok, I"ll stop whining and drain another liter of water.

Thanks,

Jen

Hi Razor-Blade,

I thought I was drinking a lot of water already.  I easily drink 3 liters a day now.  More?

thanks,

Hey Friends!

I'm now about 10 days into my Epclulsa treatment.  The sides have mostly been strange nausea, heartburn, fatigue, and painful joints.  I can mostly deal with all of these except the painful joints.  It's just so painful to move - my ankles, knees, hips, back, and shoulders are almost always painful.  Is this an Epclusa thing? A hep c thing?  I have arthritis, but this doesn't get better with movement.  In fact it seems to get worse.  In the morning I can barely get out of bed it hurts so much to move.

Have any of you all had problems like this? n

Thanks!

Hi All, 

Glad to see everyone positive. Interesting article Tig, explains the importance of adherence. I forgot 1 once but remembered 4 hrs later....

Start week 11 tomorrow, so only 14 days left (not that i am counting lol).

Could not resist doing some bloods today. AST 38, ALT 23, so consistent with the last test, GGT 40, down from 72 .

WBC still low 3720 and Platelets 118,000, any ideas ?