Hep C Discussion Forum

wendyo · Guru

Zepatier Warriors

MyMallards · Member

Hi y'all,

I've been worrying lately that I'm getting all too attached to you guys. When I heard about John's good sun-friends-Gatorade day I got all giddy and baked him some cookies. Then, lacking John, I had to eat them myself. So it's wonderful to have you but sucks not to be able to hug you. Sometimes I want to just reach out and touch a C-er, you know? I 'be been accused of erring on the tactile side all my life. More than one teacher made me sit on my hands. Perhaps some day there will be local clubs for folks like us with real barbecues and ice cream sundaes!

Very encouraged, John, that you didn't feel like a 90 yo for a day. Curious if you felt less than 80. My goal is to feel 70! Ha! I continue to be plagued by joint pain/stiffness and muscle fatigue. Still have the prickly pins and needles, numbness and zings of nighttime neuropathy too. Tried weaning myself off the neurontin but just couldn't handle it. My limbs were SCREAMING.

Today I faked a degree of wellness for my four grandchildren and used up a weeks worth of energy. Rather proud that I threw water balloons at them, made them a meal with chocolate malts for dessert and got them all bathed before pick up time...all without dying in their presence. Had to play Canuck's applause YouTube as a personal reward after they left. (Happy belated Canada day btw!)

My knee MRI shows some fluid and a Baker's cyst but I decided to wait and see before treating as it could resolve on its own. This doesn't feel like the right time to do steroid injections or PT. Gawd. Just the thought of driving to and from therapy exhausts me.

So, twinster, we're both on the homestretch of the Zep now. Every day is a step closer to the finish line! We've got this bad boy by the tail! Certainly we're the lucky ones. smile

Christine

JimmyK · Guru

Greetings John.

I would like to add that Gator Aid contains Sodium (450 Ml to liter) That is the key electrolyte that needs replacing .

Adding Gator Aid is a good thing because increased hydration (input) leads to greater output. That can deplete required sodium levels. That was the main reason I have told folks to add Coconut Water to the hydration process. (252 Mg Sodium per cup).

I believe properly Hydrating while on treatment should definitely consider the need to add sodium in that we tend to piss up a storm due to all the Water.

wink

Keep up the great work!

JimmyK

-- Edited by JimmyK on Thursday 29th of June 2017 02:35:40 PM

Tig · Admin

Congratulations on your milestone today! The half way mark is a huge deal in our world. You're doing it man, good job!

Gatorade is good for you. The electrolytes are important and if you're doing a lot of sweating, which I'm not sure why, you're losing them at a faster rate. These drugs dehydrate you and maybe your system is going another route, I don't know. If you don't rely on Gatorade for your sole source of fluids, it's not a problem. There are a lot of sugars and carbs in those types of drinks, but the extra electrolytes can be very helpful. Since you're feeling better today, post Gatorade and some friendly sunshine, you may be onto something. Keep it up...

You sound good today, John. I like what I'm hearing from you. It's a very positive, upbeat message and shows me you've found good reason to smile! The days of treatment can be long, but they are a new beginning for us. All of this shall pass and a virus free liver makes it all worth it.

I'm glad there were no wet fart reports! Canuck.... what are we gonna do with her? smile

JohnAnton1 · Veteran Member

Canuck, you nailed me- 0 to 60 quick, getting better with age and Father Time entering the picture here now though. Incapable of seeing shades of Gray, I am a Black or White guy, it is or it isn't. Been that way all my life, don't like Gray, to me that is like being in Limbo.

Not sure why but today I actually woke up feeling alive again and not like I was 90 years of age, bones and muscle fatigue draining me. I altered a few things about my routine, I made an effort to go out and meet some friends, I drank some Gatorade, along with my water intake. Is Gatorade also good for the water intake as well? Most importantly, I got an hour worths the Sun at the pool for lunch yesterday, in my past life....haha, last year and beyond, you can call me a Sun worshiper, I love the beach, the sun and just laying out soaking in sun. Today woke up and actually had energy and did not feel sluggish, yeh! Sweat a storm up last night sleeping, pillow soaked and bed as well. Is that normal to sweat so much? I hardly ever sweat, even when I am working out...... I think its the toxin's coming out of my body, am I right to assume that?

Well, today is the halfway mark with meds, another month and a half to go, six more weeks to complete the cycle of 90 days! I've been told after the meds, I will bounce back to me. I miss me, miss the gym, miss feeling my old self. Yes, I'm 60 but a young 60, mentally and physically never the less still 60 though.

Okay, got to work, enjoy everyone and I too miss the new comers that join here and have not heard from them, hope all have a great day. Thanks for your love and concern.

Canuck · Guru

Our dear twins. How I wish you two felt a wee bit better than you do, sooner, but I am very glad to hear you were both out and about for an outing! Never mind the warm look Christine, it's way better than that wet one. Either way (you were covered, literally) all bundled up like that no one would see anything.

This chills-thing you two have been experiencing sure confounds me (understatement), prolly you too! Wish that would disappear.

Very glad for the MRI of your knee, but, not for the willies experienced (both of you)!

Hm, John, do you have a tendency to go from zero to 60? You seem to be a man of extremes sometimes, don't like heights AND small places, and you commit yourself to tight planes and air balloons? Maybe a little on the dry side, so, instead of a questionable 72-90 oz., you go for 192 oz. instead? I would strive for "middle" of the road (literally), maybe a road that has a few hills, nice safe wide open spaces ... and BTW a gal is only 128 oz. hee hee, but big credit for valiant efforts.

You are both making very good and valiant efforts, under trying circumstances, performing well beyond the call of duty. I respect your oomph and push.

My partner had to go for an MRI once, same as you, they quized him about claustrophobia and such, he reports nope, never had an MRI before but, no I'm not nervous, should I be?, so they lay him down and slide him in the tube, they stop mid-procedure and come running in full-speed panic-mode, they could hear him on their microphone and see him on their camera - he's unresponsive, unconcious, aspirating!!!! Or, so they thought, he was merely very deeply soundly asleep, doing his usual snoring. The instant he got in the tube, with nothing to do, he found it very soothing, sensory deprivation/nice white noise, he was off to sleepy-byes in about 1 second flat. He didn't need ANY sedation. He found an MRI makes for a lovely nap, just too short.

Beans, did someone say BEANS!!?? Weeell, OK ... as long as we are all finished with the runs, oh dear, hoping for no wet fart reports.

Can't wait to hear your next 8 week blood report and how the ortho consult went Christine. Nice your long term cheques are coming in now. Nice too John, how that insurance situation made things work out for you.

I wonder how our other zep kin are making out - I hope Meow and Angel phone home soon. smile C.

JohnAnton1 · Veteran Member

Hey Cuz, you know I almost died when I read about your MRI, I can't do one of them, I freak out.....in fact, I remember flying from St.Martin to St. Barts in one of those small planes , 6 seaters, I almost **** myself from the close quarters..... another thing that spooks me, is my fear of heights too. I figured that I would challenge the fear to over come it and went up in a Hot AirBallon ride in Sedona, AZ, never again will I ever do something as crazy as that........

Last night was okay, no chills, drank way too much water....my bottles of water are 16oz, and I drank around 12 of them, 12x16=192oz of water, I'm going a little slower today. I forced myself to go to Hoboken<NJ last night for dinner and to run into some friends, something that I have not been doing lately, need to get out more. I work from Home and feel very comfortable in my house, but this is not me. I know so many people 'd run for Mayor, but I think my past would shed light and that would not work...hahaha.... I hate politics!

Got to run, hope you have a great day!

PS- the water has begun. Tomorrow 6 weeks of meds done, half way there !!!

MyMallards · Member

John. Dude! Sorry to hear that you had to endure such a crazy night. (Not exactly a "Crazy night! Haha! Whoo hoo!' like back in the day, eh?) Totally feel you on the body temp regulation thing. I met girlfriends for supper tonight and wore tall felt boots over winter socks along with a thick sweater despite the 75 degree evening. I fear getting an AC chill because it hurts my flesh. Craaazy! The good part? I'm old enough not to care a whit what people think of how I dress. It was good to get out and laugh til I almost peed my pants. (Not quite old enough to feel okay about wetting myself publicly.)

Did the motrin/water treatment give you relief from the chills? Please check your temp if that shaking persists. Don't be like me and ignore possible signs of infection and land in the hospital with positive blood cultures. Our poor overworked immune systems ain't what they used to be! Someday they will be strong and vibrant again...but not today. Ha!

Alison, thanks for the bean cookup idea. I'm going to give it a try because it sounds really tasty and feels friendly. I have little experience with bean dishes and was thinking I had to soak the little suckers or something. Plus, you share a name with my youngest daughter and even spell it right. Ha! Her middle name is Hope. I wonder if I sensed back then how much hope we were going to need. About the MRI: my knee took 25 minutes. I thought it would be cake but I had to push the Stop,I'm Panicking! button after 2.5 minutes. Humiliating! I should not have fibbed about the claustrophobia question. I should have taken the anxiety pill. As it went I repeated the 23rd Psalm about 46 times and prayed like lying still depended on it. They did tell me that abdominal MRIs are easier than to the extremities as far as not moving. Legs want to jump more than livers? I hope yours goes peacefully with the results you hope for.

Tig, I drank to you today. wink

Christine

JohnAnton1 · Veteran Member

Christine, thats it, legs like jello, weak, oh wow, last night was a trip, it was around 80 and humid and I had no air on and under the covers shaking and shaking...... I really felt like I was running an infection or a fever, so I downed a bottle of water took two motron and went back under the covers, I really think maybe i need to drink more water, feel okay this morning.

I hope you get back to you shortly too, kind of hard when you change things up. I used to be in the gym everyday, taking one or tow days off to recoup, but now, its an effort to walk.

John

Observer · Guru

Making sure to eat healthy is a good point Christine.

beans are super versatile, I make a fry up with onions, a hot pepper (or 3) a couple of cans of beans (garbanzo and navy are my favs) sometimes chopped up chicken, corn niblets.....spice it with thyme, salt and pepper and at the end stir in a couple of clumps of parboiled spinach. Sometimes I serve it with rice and salad, sometimes I make a pastry dough, fill them and bake them..sort of samosas or something. Anyhow, this is very quick and easy and really delicious...

beans are good in salads too.

I hope things get better for you soon. 8 week labs? That's got to be encouraging... Are you doing 8 or 12 weeks of treatment? edit::::: Oops, I see you're doing 12. That's great, you're almost done!

By the way...How long do you have to be in the machine for a knee MRI? I have to have a liver one in Oct and they expect me not to move for 45 minutes disbelief .

A

-- Edited by Observer on Tuesday 27th of June 2017 04:49:59 AM

-- Edited by Observer on Tuesday 27th of June 2017 04:51:36 AM

MyMallards · Member

Sluggish. Yes. I know how you're feeling, bro. I can't stand up for more than a few minutes without my legs turning to jello. Constant joint pain gets me down too. It's annoying and unsettling for people who were used to being active. I still make a to-do list for each day as was my habit for years. There is satisfaction for me in completing the items. I used to have 10-15 items on The List. Today it had two things: water plants and mail form to insurance company. It was a struggle but I knocked them out. Ta da!

I doubt that it's the treatment as much as the disease and extrahepatic rheumatoid in my case. I'm reluctantly needing to ask for help with things I used to enjoy like mowing the lawn and doing the laundry. Hope like heck that we will regain some get-up-and-go soon.

My long term disability has started to pay me and I'm grateful for that since I'm in no shape to work right now. I sure ran myself down trying.

My appetite isn't good to the point that I can't stomach food until late afternoon. I'm going to try increasing protein as Wendy suggested but need to find something besides meat to eat. I'm sick of eggs. Maybe something simple with beans.

Had to have an MRI of my knee last week because of increasing pain and swelling. Should get results at my Ortho appt on Thursday. Hey, I needed another doctor in the mix. Also due for my 8 week labs.

Hang tough. This too must pass. I insist!

Christine

-- Edited by MyMallards on Tuesday 27th of June 2017 02:06:42 AM

wendyo · Guru

Also want to add John - as far as feeling fatigued/sluggish make sure you are eating decently too. The less processed food the better. I learned I have a hard time with rich food, cannot do alfredo sauce, all trial and error. Make sure you are getting enough protein.

Tig · Admin

Hey John,

Sorry you're feeling so sluggish. It's not uncommon to feel fatigued while on treatment. That, along with headaches and muscle ache are the 3 most often discussed side effects from Zep. If you're not exceeding 100 oz + per day, you're not meeting the need. Do your best to meet that gallon per day (128 oz). I know it's a lot, but you may be experiencing the exact problem adequate hydration prevents. I would get refillable bottles for your daily needs though. You'll save money with one of those rocket powered bottles. It might even be so cool you'll want to drink more! Whatever you try, start by increasing it to at least 100 oz. That's the easiest thing you can try right now. If you aren't flushing your system adequately or keeping those tissues properly hydrated, it will lead to these problems. Not saying that's THE magic bullet, but I guarantee it will put that Dragon's fire on the back burner, where it belongs.

If you continue to feel poorly or it gets worse, get ahold of your doctor for advice. In the meantime, get your feet up, big glass of water, turn on the box and something funny. Try to get your mind off of the discomfort. Some good laughter will give you an endorphin blast, thereby reducing your discomfort, and hopefully putting a smile on your face! Stay the course Brother, these are the rough spots you have to power through. You can do it...

JohnAnton1 · Veteran Member

Hey you, how are you doing?

I'm real fatigued at times, but Guess alright. I asked Tig, if it was due to a lesser water intake. Not sure.

I actually felt like I was going to pass out last week, when I go out of the car, probably got out to quick. Not fishing for anything, just curious.

John

JohnAnton1 · Veteran Member

Hey Tig, hope you're well.

I'm going to throw a question out here. Anyone feel sluggish from the Zepatier? My legs at times barley feel like they can support me, especially when I get up in the morning. Normal walking which used to be fine is now like an effort, doable but an effort. Sometimes, my whole body is sort of tired, sore, muscle fatigue.

Does this have anything to do with my water intake? I try to drink at least 8-10 bottles 9oz a day. Should i be drinking more?

Thanks John

JohnAnton1 · Veteran Member

Tig, since I'm not computer savvy in this forum, can you change my information below me, after 30 days, nondetectable - AST- 23 ALT-27, or do we leave what is already originally posted?

John GOT IT, JOHN!

-- Edited by Tig56 on Saturday 24th of June 2017 11:05:54 AM

JohnAnton1 · Veteran Member

Haha, yeh, Glamorous life style.....Wendy, as they say, love you for being in my life! Thank God for God. Yeh, I skated through with the insurance too..... timing was just so right to do it....everything aliened... so I decided why not do treatment. I have always been under the assumption it it isn't broken , don't fix it ( which is why after 23 years on this journey of one day at a time , I still go to meetings, its working), and I was not really feeling ill from the Hep-C, slowing down some, joints ached, fatigued, but not down for the count...... so I stayed stuck on my decision..... but I found myself between starting 3 businesses up at the same time and then nothing ventured, nothing gained, the money dried up and I applied for medical assistance, got it.... better insurance than I was paying 16,000.00 a year for ( that company refused to treat, said I was basically too healthy, get sicker), that is another subject, but thus treatment began, and my career is getting ready to begin again. What a difference a day makes, HUH!

I get all the push on the water during treatment, if I slip up, the headaches come and the fatigue, so I am drowning myself in the water intake, thanks you guys for pushing that.

John

wendyo · Guru

John I totally get it. After my charming past, I am lucky to be here like many others we have met here and in the rooms. TYG. (Thank you God) I failed 2 old treatments and right when I was going to start the Harvoni journey my job of 20 years announced I would be laid off. I managed to get on and off the train while I still had insurance and all in the same week, one of my twins graduated from trade school, had my last day at work and got the call; I was cured. Talk about a miracle in God's time!

I know you will pass it on cause that's what we do, suit up and show up!

JohnAnton1 · Veteran Member

Thanks Canuck, yes I liked him, he reminded me of someone who became a friend, a psychiatrist that actually asked me for guidance.....haha.... little did he know I was out of my mind since birth....hahha

Yep, he cut through the chase and basically said we're done, you're undetectable and your AST & ALT are normal. Continue taking the meds for the remainder time frame, total of 90 days and then we will do blood work again around the end of August.

I asked him about my stomach problems and even him being a Gastro suggested to stay on top of my diet, and avoid surgery at all costs, he'd rather not cut. I liked him even better.

Thank you for your support.

John

JohnAnton1 · Veteran Member

Wendy, I've seen so many miracles happen in and around my journey that when I walked out of the Doctors office I had tears in my eyes all spanning from surviors guilt. I've felt this feeling as well many times when I think of all my friends that died of the package, and looked up and asked him or her whatever your beliefs are, " Why Me, why did you spare me?"

I got my answers from friends that said you have a purpose now to fulfill and that is to carry hope to others, thats why John, its that simple!

I'm just so grateful today, haha, I almost swelled up again with tears in my eyes.

Thank you for being there for me. I promise to pass it along.

John

wendyo · Guru

That is terrific news John, so happy for you! Sometimes quickly, sometimes slowly............

Canuck · Guru

Wonderful John! And I really like your new doc already, nice that he knew to cut to the chase and the first thing he should say to you was, UND!!! Nice touch, and good bedside manner in my book. Hope you did get to chat over anything else you needed to tho, but all pales in comparison, when you've just been given that news doesn't it? That's a love-er-ly crash of your ALT and AST too! Not too shabby man! More good stuff is coming. biggrin C.

JohnAnton1 · Veteran Member

Christine, you're right things are just meant to be, the stage is set before the play begins here. I hope you're feeling better, and getting through what you need to, remembering this too shall pass, my favorite cliche, nothing stays the same and everything is constantly changing. Change is good although most including myself meet change with great resistance.....

Well at least for us, this change is a new beginning and a new chapter for us.

John

MyMallards · Member

YAY for YOU, John!!!!!

Fabulous results! Thanks for letting us know. Its a beautiful thing, this Zepatier. Yes, Sir!

Tried a number of times today to post a celebratory dance video on here for you but I lack the technical skill. (Dang) Just know my heart is gyrating wildly in a Happy Liver Dance biggrin biggrin about your great news.

You continue to be an encouragement to me with each post. Peace through the storm is all about maintaining a spirit of gratitude, acceptance and confidence in a higher power, right? I'm certain that our paths (rails?) were planned to cross and am extremely thankful for that.

Onward and upward,

Christine

JohnAnton1 · Veteran Member

Tig, love the picture, I know , I knew God had my hand all the way, not religious , just spiritually fit.

Tig · Admin

Congratulations, John! It was never in doubt! These are indeed miracle drugs...

JohnAnton1 · Veteran Member

Christine, I saw my new Doctor today, and the first thing he said was congrats you are undetectable.

Thank you my friends for holding my hand, Hep-C, after 31 days of Zepatier- undetectable - AST - 23 ALT- 27, they told me come back for blood work the end of August , and then a year later, but so far, now I will keep focus on feeling better after the meds- day 39 for me now, have to take them for 90 days

I know that I am not out the woods yet, merely a step in the right directions, but since I live my life just for today, today looks pretty awesome !

I know, I know, drink plenty of WATER and continue taking your med's John. The water really does work to minimize the side effects from the med's, the headaches, the fatigue, the stiffness in my joints, everything.... thank you all for pushing the water.

Christine, how you feeling lately? Thank you for being a part of the beginning of our journey on this chapter of our life.

Canuck, Tig-thank you, not going away, but needed to say thanks to you guys as well. My sponsor that I mentioned earlier told me this morning, you know these drugs to treat the Hep-C really are miracle drugs, he was at a conference yesterday in NYC, and they actually mentioned that they are now using livers with Hep-C as liver transplants. When he went through his journey with Hep-C and after many attempts to cure it, he had gotten liver cancer, and was told he needed to clear the cancer first before they would give him another liver, he cleared the cancer, started the Harvoni, cleared the Hep-C, and then was given a transplant. But today, they use the Hep-C infected liver as a transplant , and the drugs being so good that they then treat the Hep-C in the transplanted Liver. So that should tell you something about these drugs they are using today and how confident the medical field is with them working to clear the Hep-C. I'm not sure if this was a conference from Cornell in NYC, but my friend is connected with Cornell, I'd have to ask him.

Angela, stay the course,

John

Canuck · Guru

Hey Christine,

How's it going?? I'm no good at counting, but you are over 7 weeks now, right? We need a report! How are you feeling now, as compared to the prior weeks?? Are you still on/or, when did you finish with the antibiotics? Are you sleeping better or feeling any better?? I'm almost scared to ask, I sure hope some of it has let up for you. How is the big knee, still big? I was oscillating sprinkling and dead-heading my petunias today and thinking of you, it only took me a second of plucking as my petunias are few and pathetic, but you are right, they should dead-head themselves. Let us know how you are doing. smile C.

MyMallards · Member

Itching to hear your results, John!!! I might lose sleep due to the anxiety of waiting. Ha!

Best of luck to you, twinsy!

Christine

JohnAnton1 · Veteran Member

Thanks Canuck, yes, I drowned myself early yesterday, and eased up a little after 6pm, I actually sleep the whole night through without getting up to relieve myself, yeh!

Yes, I remain optimistic about my results, after all treatment was orchestrated from above. I did'nt really plan on doing treatment, I always felt as if it isn't broken don't fix it. My numbers over the past 15 years have never really been over the chart, and I never really felt my health decreasing or declining, so I was living in denial that this thing would never progress and I would probably die from something else. But it did start to progress, VL way above the 5mil mark, it never went that high ever. I think I've had this since the 80's too. I lost a lot of other friends in the 80's from the other virus, somehow I skated through on that one, guess God had other plans for me.

But , then I found myself sitting in the right place to do treatment and this time my insurance approved the drugs, the first time two years ago, they said I was too healthy and denied me.... imagine that?

So, this time I said what the heck, and roll the dice and started treatment. So, I'm good with my decision to start it. Results as I've mentioned, God's hands not mine. I'll be okay.

Yes, I am grateful to pipe into a wonderful group of people here and root for the best for all!!

I will share my results tomorrow with everyone ,

John

Canuck · Guru

Hey John,

You will likely feel better and reassured with you blood results known and with your doc visit on Weds. Happy Weds!

Fatigue, blah, weakness is a disappointing thing, it will get better.

My fatigue was at it's height during treatment, it did dissipate. You are muscling through all, exceptionally well.

Keep your fluids up and keep doing just what you are.

If you can coddle and treat yourself kindly with even more attention and care, to achieve the best possible rest and diet you can muster, and remove stressors/work from your plate, this will only help. You can try to shift your water drinking to be some heavier during days and less so at night to see if it makes for one less trip to the bathroom in the middle of the night.

It is good to have buddies, of all sorts, like your wise and experienced sponser, and your Mom, to appreciate and to glean knowledge and perspective from. We are all here for you too. Unconditionally.

You have no choice but to leave the body and the drugs in the drivers seat for now, it will not be long, before you are feeling better, virus free, stronger and back to training and the gym again.

Get ready for some promising signs on Weds, for all your hard work! smile C.

JohnAnton1 · Veteran Member

Love your Dragon emblem. When I chose a tattoo, I only wanted one, and i never knew where my life as far as making money would place me. So, glad I put it on my chest, a Dragon, tying it into my martial arts study. My audience work wise, walked me into cooperate America dealing with stuffy CEO's and a lot of technical guru's, glad I choose to put it where no one can plainly see it. People can be horrible as most judge others, sad but true. Thanks for all your advice and knowledge.

John

Tig · Admin

I see clearly now, he was referring to the viral load, not the enzymes. If that isn't undetecteable, it will be shortly. You're right in any case, all will be well!

JohnAnton1 · Veteran Member

Tig, Thanks , I think he meant the enzyme counts , like mine were over 5 million prior , I think that is what he meant but thanks for the clarity. Ye, I believe all will be well. I get it now, thanks

Tig · Admin

Good morning, John. Just so you know, the ALT and AST are the liver enzymes. I have no doubt they will be drastically reduced. Normally we see them well within normal limits following the first 4-5 weeks of these new DAA's. You're going to be pleased, I have no doubt!

JohnAnton1 · Veteran Member

Thanks to my new found family, "The Zepatiers" for all your concern and love for all os us here on this thread.

On Wednesday I go and get my blood results, my dear friend told me not to pay attention to much to enzyme count, but to pay attention to the ALT and the AST count, that is to be my focus of attention. His name is Dominick and i use him as another form of support. Unfortunately he started his treatment very early and even though he eventually cleared the Hep-C, he experienced it all, Cancer in the liver, cleared it, had to clear the cancer do the Harvoni, clear the Hep-C and then a liver transplant. He is living okay today. He's gone to some of the best hospitals in NYC, Cornell as well as others and speaks a lot at conventions and support groups about the dangers of what Hep-C can do if it progresses. He's been my sponsor too for over 30 years now, he is a friend and has seen me at my worse.

What I experience is fatigue, not serve but lacking in energy that i never felt before treatment. Knee's weak in the morning until I down my first one or two bottles of water, amazing but the water is essential, TIG, I'm convinced of it.

I sleep well, but as Ive mentioned earlier, I drink so much water, I get up every 2 to 4 hours to relieve myself. Ugh, never has happened prior to treatment. I usually though fall quickly back to sleep. No problems there. Muscle's a little ache, but no big deal, can't wait to get back into the gym but honestly, I don't have the energy or drive to do so right now. I'm feeling my age most times, but as my Mother used to say as she laid there dying, "I'm down, but I'm not out", she died in 5 1/2 months after bine diagnosed with Pancreatic cancer, horrible death.

So, Im not dying here, plenty of living left to do here.

Angela, not sure about the chills, I had them for a day of two but could not figure out if it came from the Zepatier or my attack from Diverticulosis, I could run a fever from that one too, but it went away.

Just drink 8 to 10 bottles of water a day, that seems to really help, thanks Tig and everyone else her for pushing that one. I will share my count on Wednesday with everyone, should be okay, will be okay!

John

Tig · Admin

Hi Angela,

I found that there is a common complaint during the Zepatier drug trials, up to 17% of those people experienced chills during treatment. I have a feeling that you may be one of the people that happens to. I saw no mention of the issue lasting after treatment. Side effects on Zep are relatively low overall. Most can be resolved or reduced by simply drinking copious amounts of water.

I hope the longer you are on treatment, the less these things bother you. I understand how difficult making life happen in some semblance of order can be while on treatment. Now your ankle is injured on top of it! Do your best to just cruise through the last weeks of it. If you don't have to do something, don't do it! This is the perfect time for procrastination wink

Angelbaby30436 · Member

Thank you all for you encouraging words!!

Tig: I am on edge all the time. I am sorry for that.

Observer: I will try that shuffle thing. :)

Christine: 4am seems to be my time dozing as well. My legs shaking from weakness. I tried to jump but found out that wasn't going to happen so my grand and I layed together on the trampoline and looked at the stars and made funny noises mocking the animals we could here. She is 2. I stepped down onto the chair and started to shake. Juat before I grabbed her to help her down the chair flipped somehow my foot got all twisted up in the legs. I knew better. I just wanted some fun time with her. It's ok tho. I am staying positive and I know it will all be worth it in the end. And....I too use my insomnia as my God and me time. :)

Canuck: No cast....just crutches and a stretchy wrap. It was very swollen. Just bruised and sore now. It is healing everyday. As are my spirits. They gave me a pain shot at the ER and a sceipt of toradol have I didnt get it filled. I already take Hydocodone for some bulging disks that I have. I am hoping I will be able to have the facet injections and won't have to take the pain meds. I am so scared of them. I live in a small town and pills and meth has almost taken over.

The chills come and go. I started running fever this past wednesday and Thursday. I couldn't find the thermometer so so we just used the old cheek to the forhead method. I had one just not sure how high it was. I go tomorrow to get my first bloodwork since I have started treatment. I will let them know about the fever. And I know good things are happening so I am excited to my results.

Thanks you again everyone for the welcoming and encouragement! !!!!

Angelbaby30436 · Member

Thank you!!

Observer · Guru

I was catching up on your posts and saw that Angela has been having trouble falling asleep and I remembered reading about a cool trick that I wish I'd known about when I had that trouble.

Its called the 'cognative shuffle".

Basically you choose a word that doesn't have repeating letters, like 'bird'.... and you think of as many words as you can starting with the 'b'......the university professor who invented/discovered it said most people are asleep before starting the second letter.

Anyhoo...might be worth a try. smile

Cant wait to hear about your numbers, John.

A

-- Edited by Observer on Sunday 18th of June 2017 06:12:50 AM

MyMallards · Member

John,

I'm holding my breath (except when I inhale) for your test results! I so want a good report for you that I can taste it! It tastes like the sound of the ice cream truck coming down the street.

We've got that dragon on the run now! It's destructive days are numbered.

Christine

Canuck · Guru

John,

Man, I can HARDLY wait!! They are your tests, your journey, but you'd think was all about me! - but I suurre hope your blood results come back fast - I can't stand the suspense and all this dang waitin'! Funny, even though I was cured so long ago, I am still kinda in that same place, but now, anxiously awaiting for everyone else to get their first good news, just like it was my own! You sound so much more patient than me! smile C.

JimmyK · Guru

JohnAnton1 wrote:
Hey there C, well today marked the 31st pill of Zepatier, and off to draw my blood work this morning, as they say, the rest is in God's hands not mine!

I remember asking, "Carolyn first, and then me LORD."

I can absolutely attest to the fact, you're in Good Hands. wink

JimmyK

Tig · Admin

Awesome, John!! I think you'll be pleasantly impressed with your test results. It's going to be nice to see all of you Zeppers kicking Dragon tail at the same time. I think we'll have to throw a cyber-party to celebrate!

JohnAnton1 · Veteran Member

Hey there C, well today marked the 31st pill of Zepatier, and off to draw my blood work this morning, as they say, the rest is in God's hands not mine!

I feel pretty positive about my journey, so we shall see. Wednesday I go to see the doctor to read the results to me. Yep, this is a new one, the other just upped and quit her medical location she worked for. Oh well, I'm grateful to her for getting me approved for the Zepatier. I wish her well.

Thanks for all your support and everyone else here on this thread.

John

Canuck · Guru

Hi Angel,

Welcome here from me too.

Sorry you are having a tough go of it, insomnia and fatigue! Such a bad combination. You have my sympathy (all of you who are smitten with the "awake" bug!). I never did have that problem (of being awake too many hours per day)! For me, generally, it was always the opposite, I could miss most of a 24 hour day with feeling weak, and having profound fatigue and overwhelmingly irresistable, unstoppable exhausted naps and sleeps anytime of day/night (but that was happening to me before treatment too!). My sleep/wake patterns are still remaining kinda altered, but I had been a "natural" night owl most of my life anyway. My strength is better and improving now, the overwhelming sleeps have stopped, although I still note more taxing physical output makes for more demand for sleep. Generally things (many things) have very much increasingly improved, slowly and steadily, incrementally and in some cases dramatically for me after cure, and they are still improving! I hope all our zeppers here, will start finding and feeling some relief and improvements, quickly, after cure (if not sooner!). You will improve.

That is a particular cruelty, to be sporting a broken foot, on top of everything else! Talk about adding insult to injury, or, would that be injury to insult? Either way, very unfortunate, when we are saddled with anything "extra", just right now, when we are already very busy with treatment. Not very fair at all!

Are you packing a big ole plaster cast, or one of those fancy air splints? I sure hope you have some helpful people at home, or near you, folk or friends who will pitch in to give you a hand when and as required. Sometimes we have no choice but to do some orchastrating to get what we need at home. Is your foot painful /swelling, is that also contributing to bad sleep? - what did they say you could take for pain releif at night if necessary?

I am worried about your account of "chills" - do not ignore this. Get it checked out. Do you own a thermometer? If you are having chills, monitor your temperature, day and night, if you are having fevers, you should be making a doc appointment for it right away.

When you have time, creating a signature line is helpful basic data to share, it makes it easier for everyone to have basic info at a glance when we are conversing.

John,

Very relieved to know your gut is "some"better, and that you do have your labs planned and that you do have a doc appointment set. No night sweats anymore?

Christine,

Good to know that missing bit of hx about your swollen knee, I was wondering how or why the septicemia appeared - is that what you are thinking as a possible source of the infection start? I was, BTW, further quizzing you about fevers and the antibiotic use, but over in your other thread.

Meow,

Let us know how things are going. Good I hope.

My most fervent wish tonight (for all of you), is a deep, restful, healing sleep. And if sleep does not come, then just simply a deeply restful healing night. yawn Know we are all sending only our very best possibe soothing positive vibes out your way! smile C.

MyMallards · Member

Hi all and welcome Angela!

I'm on my 7th week of Zepatier. The good news is that my 4 week viral load was undetected. Yippee! The not so good news is that I've got some extrahepatic diseases like sjogrens and rheumatoid arthritis that started within the last year. Also have a swollen painful right knee that may have inspired a staph blood infection and a few hospital visits. I had weeks of chills and fever preceeding and waited too long to have it checked. Not recommended. Some of these extras may resolve after treatment for the hep C. I try to stay hopeful.

I have had insomnia every night on the Zep even though I take it first thing in the morning. I get to sleep around 4 am. It was maddening at first especially when I was still working. Do you watch The Walking Dead? Those zombies have nothin' on me! Ha! So, I have decided to just accept it and use the time to read or pray and meditate. Some nights I journal about how I feel and what I'm grateful for. If you ever need to msg or call someone to kill time at night, I'm your girl!

Sorry to hear about your injury. Were your legs shaking on the chair out of fear, or weakness? My legs tremble when I walk down steps. It's actually kind of fun for me to watch them. All sorts of things about my changing body are curiosities to me. A couple of good things I've noticed are less hair falling out and smoother stronger fingernails.

So glad you're here and have been fortunate enough to get the Zep. Hey, it could be a team chant: Get the ZEP! Get the ZEP! Get the ZEP! Gooooo, Zep Heads! Yaaaay! (Then we raise our giant tumblers of water in cheer and drain those suckers!

Hope you all enjoy a lovely tomorrow,

Christine

Tig · Admin

Hi Angela,

No apology necessary. I know it's easy to misunderstand the written word sometimes. I'm glad we got that straightened out. We need to relieve stress here, not bring it on! When you don't feel good to begin with, it doesn't take much to boil water. It can be an unfortunate part of this illness and treatment.

I hope you stay with us and get to know everyone. We think we're all pretty great! (Humble too) Let us show you just how much, lol!! We have fun, in spite of the situation. Friendship and understanding are important to us here. smile

JimmyK · Guru

Angelbaby30436 wrote:
"....But I haven't been drinking a lot of water. Tea, soda and koolaid mainly."

Greetings,

The water is the key. The others sound a bit high on the sugar content and really defeat the hydration factor. Each of the symptoms you have described can possibly be related to lack of water.

I know it is not the easiest thing, but water right now is your best friend.

JimmyK

Angelbaby30436 · Member

Please accept my sincerest apology. I misunderstood you.

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