Hep C Discussion Forum

Hey, 

You sibs are getting along right fine, figuring things out, no in- fightin' (that would never happen in my genetic family, that's why I am soooo glad to have all you sis's and bro's here, as my bigger fam, where I can still learn a thing or two)!

I like your ambivalence and acceptance to change John.

Christine ... Attitude?? Toilet attitude or otherwise? For me, attitude has always undulated around, like a leaf twisting on a windy day! I once said I am merely a child of life, still learning, therefore, for my attitude there is no right or wrong to be had, just is. With this premise I cannot be blamed for anything! heehee

I loved the image of the mesmerizing oscillations, withering flower heads fading from demand, and quiet reflections. I am so thankful you have this time now. We have had more than a few here, account, that at some point in their hepc journey, their realization of what good things happened to them (that they could have never imagined) because of having this affliction! 

Your comment, about "life as we knew it, being on hold" ...yep, I got knocked down kinda hard off and on and then for some time prior to treatment, and while on treatment, profound fatigue (and other things) were at it's height. I resigned to it, toughed it out, did my duty (very gratefully mind you) and waited, and waited, and waited. The milestones passed, and bit by bit, I got to relish incremental improvements. The "height of things" on treatment I strongly suspect had to do with the third drug I was on (I think, but I guess I will never really know) - at times i thought it would never pass, but it did. I am still improving! The most important improvements have already happened, the rest is gravy! I love gravy! Last year was a longish blur, this year is clearer, even though I am still committed to frequent medical intrusions and interactions, so this year too still feels on the longish side - but I am soooo grateful I am cured, worth every minute and second of it, and I feel all of it has contributed to making me a different person (in many ways).

Now, me, nosey and demanding ....  I need answers or I won't be able to sleep! Are you sleeping any better? How much augmentin are you on now and for how much longer - you mentioned  a change to a 1/2 dose of augmentin?? Did the doc tell you to do that? Have your fevers resolved? You were staying close to the toilet due to rumbling guts in response to the augmentin (those risky trips to the mailbox with perhaps a fun "run" back to the bathroom) - has that stopped? Is your skin rash thing the same or better? 

Tomorrow is another day, and we'll all do our best. I'm going zzzzzzzzzzz soon, hope you are already there, in sweet healing slumber. C.

Christine, everything passes in life, that is what makes it so special. The good times never last forever and neither do the bad times, everything is constantly changing. Embrace the changes and realize that it too will change. Change is good, but comes at a cost of acceptance, you are right where you are supposed to be at this given moment in time. God's will. So you keep the faith and realize that ultimately there is a plan already in place for you, it just hasn't been revealed to you yet! Keep your eyes focused on tomorrows to come, live in the day and embrace every moment and never loose having gratitude in your life.

Every morning I get up a little weak, legs feeling funky, but I muscle out and begin my medication and drink two full bottles of water, have coffee and then believe it or not start to feel my legs get stronger and no so weak. Water I guess really is the trick here, I'm a slow learner but getting there.

Got to run, well walk to my car, its a Birthday for my wife little niece who is getting big now, well she is 9 today. Ah, she calls me Uncle John, that is so..... you know I never had children so when I hear you say you're a Grandmother, I guess I missed that part in my life. Next round, when I get there.

Keep positive.

John 

Hi, my treasured Canuck. I missed you! I knew you'd celebrate with me! But, Wow! Cheers, dancing and killer poetry! Thank you! Considering a zero tattoo on my forehead.

I'm on Zep for 12 weeks too. Close to half way through now. Expecting my undetected status will hold and some magical day I'll be a true SVR. Won't that be sumthin'?!

Counting the days til your first bloods are done, John. Then we'll lock arms and wait for results together. Oooh, I'm getting chills just thinking about it.

But Dude-twin, we have GOT to get some consistent sleep! 

Christine, yes, 7 days away from drawing my blood work. I've never doubted anything but positive results from this, after all it was all orchestrated by his will, not mine.

Funny both you and I have other things going on, my stomach has been bouncing real bad with lower abdominal discomfort that runs all day until I lay down at night to rest and then I'm up every 2 hours like clock work, trying to force myself to relieve myself, ugh.... after, back to bed again for 2 hours and up. Cipro and Flagyl, that is the culprit here. Been 7 days now taking these med's. I just want to stop taking the Flagyl, that is what is ripping me apart and just continue with the Cipro  for a total of 10 days.

I believe in my heart of hearts, I didn't come this far to be dropped. Agreed, this too shall pass!

How you feeling?

ZERO!!!!!!!!!!!!!!!!!!

FABULOUS RESULTS!! A Big Fat Zero? How cool is that!! Congratulations is in order, drinks on me! Grab your water and take a loonnnggg pull on that bottle.......... I'll wait.......... Now don't you feel great? I knew it, I just knew you would, lol.

Seriously, that's super great news. These are powerfully good drugs and will deliver as advertised. I'm happy you are all getting this opportunity to grow as old as I feel, ha, ha! Maybe that isn't worth striving for, but a healthy, happy and virus free liver sure is! 

Keep on fighting and never look back!

MyMallards wrote:

So, we are on the right path. I know it but need reminders on the hard days. Not scratching and drinking my gallon of water is my goal for today.

I have to make a confession. Father Tig, I have sinned.  On most days during treatment I have overestimated my water intake. The gallon jug is now my accuser. Almost midnight and it's still 25% full...and I've tried! Fortunately I'll be awake til 3 so I have time. Ha. Can I get a reduction on the requirement based on body weight? :::spoken so sweetly you can't resist::: 

 

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 Dear Christine,

The long answer is:       NO 

I will however, allow you to roll over the water quantity missed. Kinda like leftover minutes on your phone plan. Understand this is on a limited basis and must be consumed within 24 hours! I do like the drinking out of the hose idea! How about we just install a hose fitting somewhere??? That would make things easier! Might even be fun, woohoo! 

Hey John, good to 'see' you. I know what you mean about just wanting to feel better! Even a little bit better goes a long way. Really hoping that we will get general health improvements by staying the course with Zepatier. Our beat up (twin) bodies deserve a break! 

I got some relief from my rheumatoid NP, Barb, today. No new pills and no more tests. She gave me some better things - hope, compassion and recognition of my humanity. Truly remarkable how Barb sat with me and looked into my eyes like I'm a person, not a problem. Her kindness was palpable. It's no fun to be sick and the medical treadmill is exhausting. I was disappointed to hear that I don't need to go back there til September because she is Good Medicine! She wants to "let the Zepatier do its work." The hope is that maybe my arthritis symptoms are only 'reactive' to the Hep C and not true chronic rheumatoid based on my positive RF but normal CPP results. (Canuck, any thoughts on that?) I would like to imagine that someday I will be able to walk the beach, chase my grandkids and plant a garden. Ahhh. Hope. Dead dragon. Life back. 

So, we are on the right path. I know it but need reminders on the hard days. Not scratching and drinking my gallon of water is my goal for today.

I have to make a confession. Father Tig, I have sinned.  On most days during treatment I have overestimated my water intake. The gallon jug is now my accuser. Almost midnight and it's still 25% full...and I've tried! Fortunately I'll be awake til 3 so I have time. Ha. Can I get a reduction on the requirement based on body weight? :::spoken so sweetly you can't resist:::

Wish I could have you all over for a cookout. We could drink from the full-blast hose. 

I love that you're really not normal,

Christine

Wow this tread looks like a throw-back to about 3-4 years ago when rash was a expected side effect. So my advise Christine is DON'T SCRATCH!!!!!! No matter how much it itches scratching will just make it worse. Way back when Incivek was part of treatment the rash it gave was considered life threatening. With that much on the line we learned not to scratch. The new drugs are much better you will be fine. Keep your spirits up.

Best wishes for you.

You do sound better in that last post. I can hear it Yes, we are real. 

Greetings and Yuck. Sorry how you are feeling.

The Augmentin would have roughly the same effect on me. I am allergic and have ended up in the ER due to severe rash/itch/blotch. 

I was not always allergic to these sorts of antibiotics until around 30 or so. Reactions tend to be progressive in severity.

I don't know that Zep would have this sort of reaction but I do know the antibiotics can.

All my best

JimmyK

Well I only made it at home til 6am. The itching and fatigue was driving me mad! Plus the whole restless episode left me nauseated and unable to even choke down water. (I can feel Tig having chest pain about that. Lol) I called the on call doc who mimicked your voices perfectly and said to "go in to ER." Hmmm. Are you in collusion?! 

I drove myself in a frantic haze without even putting on clean underwear. (Twin John is surely disappointed. Its not our family norm.) It's amazing what we can do in desperate circumstances, right? Plus the traffic on a Sunday morning isn't a problem. 

The ER doctor didn't think my welts looked like an allergy to the Augmentin but 'might be a reaction to the Zepatier or something else." They gave me more Benadry, Tylenol and fluids. Also drew CBC and CMP that came back "normal." I will check the patient portal tomorrow to see if my LFTs have changed. No viral load results are in yet - I asked. 

Was interesting to see that puritis is a possible Zep dermatology side! When I left the hospital I suspected the doc had just made that up. Not sure I like being in the 1-10% though. Grrrr. 

Feeling a little less like road kill now. Staying mostly horizontal helps. I'm drinking the prescribed water hoping it helps the headache. Haven't eaten yet because I can't think of anything that sounds good and takes less than 30 seconds to prepare. Might try oatmeal or a piece of toast pretty soon. Or ice cream! I've earned it. 

Need to get some strength back so I can drive 30 miles to the rheumatologist tomorrow. That's going to be an itchy trip for no gain. But, I have to make the appointment in order to stay active with the office. If I can clear the Hep C they might treat me someday. Oh gawd. This is a far cry from my real life. At least I don't feel alone. Nobody else really gets it. Thanks again.

Onward and forward,

Christine

Just a review of common sides that "might" be found with Zep - "skin" is mentioned (as did one other person on Zep, who popped in here briefly, a while ago, but has not reported back since). All the documentation on Zep seems to lean to ... that sides (if experienced) decrease as your body adjusts to the course.

Just saying ... pruritis and skin issues "can be", from one drug (or another), and/or from other circumstances.

Ill feelings/sides/symptoms/complaints ... should always be checked when they occur, when on a course of meds, and especially when one is on important multiple meds for multiple issues. In cases of multiple meds, it needs to be sussed which drugs may cause what.

Dermatologic

Common (1% to 10%): Rash/pruritus^[Ref]

Gastrointestinal

Very common (10% or more): Nausea (up to 11%)
Common (1% to 10%): Diarrhea, abdominal pain^[Ref]

Musculoskeletal

Common (1% to 10%): Arthralgia^[Ref]

Nervous system

Very common (10% or more): Headache (up to 11%)^[Ref]

Other

Very common (10% or more): Fatigue (up to 11%)
Common (1% to 10%): Irritability^[Ref]

Psychiatric

Common (1% to 10%): Insomnia, depression^[Ref]

Respiratory

Common (1% to 10%): Dyspnea^[Ref]

You're right. I know that and don't want to accept it at the same time. I have an aversion to hospitals when I'm the one in the bed. Can not figure out how to safely avoid going this weekend though. I'm between sepsis and an allergic response. Oh darn!

I hope to get a few hours sleep. Will contact Dr on call in AM and they will tell me to go in. Then y'all can say you told me so. 

Glad I have you.

Oh friends. I have no known allergy to the cillins. I can't get in the tub because I have no confidence that I can get back out. I'm too weak to drive to ER tonight and no kids abailable to take me now. I will stop the Augmentin and take Claritin. May be best to go in AM. Thanks again! 

Hey I don't like the sound of that! Have you ever taken Augmentin before? You sound like you're having an anaphylactic reaction! Are you sure you aren't? Taking more if you're not sure can lead you into an even worse reaction. Go cautiously...

What have you done for the itching? There are some good OTC products, Caladryl lotion helped me a lot. Zyrtec and lotions got me through. You might investigate the Oatmeal products. The bath products are nice. A good soak up to your eyeballs is nice and calms the itching. Don't use anything warmer than lukewarm! Hot water and harsh soaps will make it worse. Avoid them while you're Dragon slaying.

One other piece of advice, and an important one; don't scratch!

The analogy should be something about the final crinkle of the last blister pak. I can hear it now! Use our calendar and enter the date of your last pill. What we fondly refer to as EOT. It is a wonderful day and well worth looking forward to!

JohnAnton1 wrote:

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Canuck, Confusing you, well I'm Polish that says it all..hahah. My insurance company, the first round of dispensing the drug came in two week periods, yesterday I got my second two weeks for Zepatier, totaling then a months supply, now on day 15 of taking the meds.

The Gastro that initially drew the blood work, and prescribed the Zepatier- just resigned, so it left me with no one treating me accept her last instructions of coming back in a month to run my blood work. I was in shock, that medical group would have a Doctor quit or resign and no one called me, I called them to check to see if I could take the Cipro and Flagyl for my stomach issues ( Still have a hard time pronouncing and spelling Diverticulitis) so I will talk about my stomach issues.

I am fortunate however to have a best friend who is a Kidney specialist that I can call to send me in a script for the Diverticulitis. Of course I did not take the drugs until I cleared it with the Pharmacist .

So, yesterday I called the medical Group, set another appointment with a new Gastro in place of the one that quit. Per my last directions, I am scheduled to do my blood work on the 19th of June and I scheduled to see this new Gastro on June 21st to read the results and talk about where do we go from here. I HOPE that someone medically will be with me on this round.

I am grateful to have a friend as my personal Doctor, his Father was my Doctor, and him and I have been friends over 50 years. The both of us have been around the world as young adults fighting in competitions, Judo. We have a life time bond. At least I have one Doctor in my life that knows me and cares. But he is not a Gastro. Hence the need for another one to continue my journey with treatment.

I hope that I was a little clearer on my delivery of information this time. Hope all is well with you my Canadian friend.

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 Ah! OK. Thanks. I gotter figured now! 

Man, your pharmacy must trying to make a few more pennies for themselves, for each dispensing (handling) fee (that's how it works up here anyway) - up here pharmacies prefer you come in frequently/repeatedly to pick up small portions of your ongoing prescription so they can charge you a "dispensing" fee each time! Who knew there was so little profit in these hep drugs that they have to scrapple around to squeeze a few more dimes out of the deal for themselves! On the other hand, maybe it has nothing to do with gleaning more dispensing fees, but rather, trust/mistrust of the public ... we cannot be trusted with more than 14 days worth of pills at a time? - who knows, what with our limited knowledge/abilities what we might do with them! - loose them, sell them, flush them down the toilet?? Oh good grief! Oh ya ... just recallled ...  toilet .... well, we did have one gal here one time who tried that with one of her pills. hee hee Oh ya... then there was Syd (not her fault tho), she, under the influence of riba, dropping them down the slots of the floor air register until she lost count (I used that same tactic when I was a kid, facing cold carrot coins on my plate!) - they fit and disappeared through the slots so nicely.... oh, where was I ? Oh ya ...

So, now I fully comprehend why you were so put out about that gastro doc up and leaving (I missed that bit, did not connect the dots that she was also the one who was slated to guide you through this Zep thing. I, for some reason - (I just tend to make things up as I go along!) - thought she was "just" your divert. person or something. Unreal!!! It was bad enough when I just thought it was a doc who quit on you - but being you are "mid-stream", that she was the one who worked you up and got you committed on Zep!, I am horrified she, and the whole associated practice (her co-horts) allowed that to occur with no fan-fare or prep for the event - dismal pro-activeness on their part. Yes, I too hope who replaces her is right on!! Please do let us know, and what blood letting schedule the new doc will set up for you. Good you have friends in high places lookin out for you, and you, being the adult in room, I know you will make it work no matter what stumbling blocks they threw in front of you. You've got a good self-directed plan going on here, the only bit lacking is hiring a new technical advisor replacement.

How is the gut feeling today?? Has the gripping pain left? Did you still wake up soaked in sweat last night?? I hope not. Let us know on that front too - if the cipro/flagyl has kicked in (for the good).

You must get "blister packs" (not bottles) of Zep, so I will have to figure out some analogy for the happy celebratory rattling sound for that last pill in the bottle. Dem dar new-fangled blister paks are jes a tad too fancy fer me.  https://www.youtube.com/watch?v=MKhtZX17lZQ

Good morning, John. I can add your L-In photo as your avatar if you want. It's done through your profile page. You can add attachments to your posts using the function at the bottom of your reply. That sounded clear as mud... Let me know if you have any questions or need help posting attachments.

HYDRATE!

Posting Attachments

Canuck, Confusing you, well I'm Polish that says it all..hahah. My insurance company, the first round of dispensing the drug came in two week periods, yesterday I got my second two weeks for Zepatier, totaling then a months supply, now on day 15 of taking the meds.

The Gastro that initially drew the blood work, and prescribed the Zepatier- just resigned, so it left me with no one treating me accept her last instructions of coming back in a month to run my blood work. I was in shock, that medical group would have a Doctor quit or resign and no one called me, I called them to check to see if I could take the Cipro and Flagyl for my stomach issues ( Still have a hard time pronouncing and spelling Diverticulitis) so I will talk about my stomach issues.

I am fortunate however to have a best friend who is a Kidney specialist that I can call to send me in a script for the Diverticulitis. Of course I did not take the drugs until I cleared it with the Pharmacist .

So, yesterday I called the medical Group, set another appointment with a new Gastro in place of the one that quit. Per my last directions, I am scheduled to do my blood work on the 19th of June and I scheduled to see this new Gastro on June 21st to read the results and talk about where do we go from here. I HOPE that someone medically will be with me on this round.

I am grateful to have a friend as my personal Doctor, his Father was my Doctor, and him and I have been friends over 50 years. The both of us have been around the world as young adults fighting in competitions, Judo. We have a life time bond. At least I have one Doctor in my life that knows me and cares. But he is not a Gastro. Hence the need for another one to continue my journey with treatment.

I hope that I was a little clearer on my delivery of information this time. Hope all is well with you my Canadian friend.

lol, you and brother John both get me to giggling, with your wry, funny plays with words and pictoral humour - you must be twins! at least in the humour dept - (it must be the drugs).

Good the both of you are trying so hard, and with trying circumstances testing you, you still have room for humour. "Risky behaviour", "anti-bionics", hee hee hee hee!

If it is of any consolation to you two, constipation is not all it's cracked up to be either.

I really do have my fingers crossed that the antibiotic courses you are both on will kick in soon, big time, and do their duty for you (as far a relieving what they were intended for), even if the sides from them feel like double-duty. 

So, Christine, did you end up having only the PCR and no other bloods? 8 hours of sleep!! OMG. Any fever today? I am so glad you are staying put at home.  Yes, I will be clapping more, but I'll let you in on a little secret, I admit I already had a wee mini-party for you, with that ALT drop at 3.5 weeks! Sorry, I should have let you know. 

Gee John, you got me all confused now (it doesn't take much!, happens often), who is your Zep directing doctor?? Who is taking care of you? Gastro resigned 3 years ago, diverticulitis lady up and quit without telling you, so ... is it your GP who guiding your Zep tretament and following you? Who bellied-up and got you your cipro/flagyl tout suite. And, why would you be getting only 2 weeks of Zep delivered at one time - doesn't everybody receive shipments in increments of 4 weeks at a time?

I don't know what blood draw shedules have been pre-arranged, for either of you (other than you are/were both to have 4 weeks draws), but as far as hep labs (VL's and related) going forward over the 12 weeks, what's the Zep plan?, and, in my ignorant opinion - both of you need frequent bloods (and doc visits) in relation to your other symptoms as well. 

Here is me hoping for no feverish sleepless nights for the two of you. Hope you rest as easy as this tonight. https://www.youtube.com/watch?v=vwji6HiXWCs

Hi all! 

Love reading all your posts. Hope you keep feeling better brother John. I like picturing you as how I would imagine my twin to be - which makes you about 5'4" and slender with thick dark wavy hair.  You hunt, fish, take no **** and laugh often. Alright, so I could be wrong. Ha! No matter the details, I'm glad we're getting stronger together in this safe place. 

It was such a beautiful sunny day with a fresh breeze here in Michigan. What a great day to be resting out on the deck. Irises in bloom and peonies on the verge. Chipmunk babies, sassy squirrels, bluejays and butterflies. I did pull out a half dozen weeds but then my body said 'Sit!' so I did.  It has been a long while since I've been able to feel good about putting my feet up. Healing is my work for now. It's enough.

Perhaps it's a coincidence but I was asleep by 1:00 last night and slept for over 8 hours. Halleluja! Praying for a repeat but under a lot less pressure since I don't have to be up,  dressed and in to my office. Getting dressed is the trouble. My joints won't wiggle in the morning. Unfortunately my employer has a dress code that demands I be dressed before punching in. 

Big four week lab draw done today. How long, my friends, before I get results? Went to a large medical center lab here. What is customary? I didn't feel the urgency to see how the Zep was doing until now. But now I NEED to know! You know?!

Canuck, will you clap again no matter the numbers? (I listened to the applause YouTube again today. It's my new favorite song.) I hope the results are 'a big fat zero' for me and for the encouragement of my bro-twin. 

Must agree that It's All About Restroom Location. The Augmentin is a B. My walk to the mailbox and back feels like risky behavior. This too shall pass. Everything passes...right quick. Ha! 

Jimmy, you're right. Just do it. Thanks, I live right outside NYC, and I have to park on the street, sucks but I use that as my walking. I make sure I park about a mile away to force myself to walk. Then I have my dog, she reminds me too, its time for a walk. Thanks again my friend.

John