Hep C Discussion Forum

Tig · Admin

RE: Peeking out of the closet -on Zepatier for 21 days

JohnAnton1 · Veteran Member

Hey Tig, hope you're well. Thanks for all your support on this site.

John

JohnAnton1 · Veteran Member

Jimmy thanks, amazing how beautiful a day is. Nothing stays the same forever, always changing.

I took meds for my stomach infection, it gave me some relief but not as good as I will feel tomorrow.

Thanks for your kind and warm wishes.

John

JohnAnton1 · Veteran Member

Christine, yeh, we are twins in our journey starting the Zepatier around the same time. I'm grateful to have someone going through this the same time as me. I'm grateful for my Canadian freind and Tig, I'm just grateful today.

It took me along time to make that decision to start treatment. My original Doctor who was a Gastro and a Infectious disease Doctor tried over 15 years ago to get me on the Rivoban and interferon cocktail, no way I told him , not until they come out with something non evasive..... hence begins my journey of today, Zepatier. He retired 3 years ago, I miss having him in my life. Besides one of best friends being a Kidney specialist, most Doctors really don't seem to take an interest in their patients. I found that out yesterday. Yes, I will make another appointment to discuss my condition with another today. I'm lucky my Pharmacist is great and lucky to have my friend who is the Kidney specialist in my life, but I need one that will monitor my treatment with Zepatier.

So yesterday I took the meds for the stomach ,Ugh, they are real hard on the headaches and the stomach, jumped in bed, must have ran a fever all night, sweating profusely, changed my T-Shirt 3x's, but I slept. Feeling a little relief from the meds, and now waiting for my refill of Zepatier to arrive.

I wish us and anybody else doing treatment a speedy and a healthy recovery period.

How are feeling? I feel around 75%, not quite great but little to no side effects from the meds.

Thanks for your reply Christine, have a great day.

Canuck · Guru

Well my dear, this is just fer you! Right along with my great big smile .... https://www.youtube.com/watch?v=a9NIZOvfKpc. biggrin

So glad you made that phone call today!, so glad you stayed home today!!, uhh, hm, wait a minute ... did she say "today"? .... like, as in ... she didn't mention tomorrow and the rest of the week (and the 2 weeks the doc probably meant) that she should be home nursing herself along with the augmentin??? confuse

Err on the side of caution, you are on the beginning of a roll!!, stay off work if you can arrange it, starting today! I would. smile

Happy PCR draw tomorrow! C.

MyMallards · Member

Canuck, I did a big thing today after you planted the seed of an extended rest. I talked to the disability Rep about my multiple diagnoses and my need for a healing break. It looks like I will easily qualify maybe as far back as November.

Will you please clap?

MyMallards · Member

Hi John,

We started Zep so close to the same time that we're practically twins!

I'm sorry you're having a rough time of it today. Although I have no experience with diverticulosis I've had patients with it and their pain in a flare was hard to watch. Hoping you are soon more comfortable and the Cipro/Flagyl bullet works. I certainly hope you get the pick of the litter in your new Gastro and not the runt! Right now I bet you could use some consistency. Wishing you a nice long string of better days.

I know the worry that goes with adding medications while taking the Precious and Expensive Lord Pill Zepatier. We really, really don't want anything messing with it! I warn the whole handful of tablets to 'try to get along down there' and force myself to trust the pharmacist and the good folks on this board. So if anybody around here says 'Drink' then I fill up my water tumbler. I believe they are providing me Good Orderly Direction.

Are you getting enough rest time? (Please, Tig and Canuck, refrain from sneering at me. Ha!) I didn't drag my exhausted butt to work today and I feel so much less awful. So, if there's a way you can eliminate something it may give you more energy to bring to the task of getting well.

We WILL get well. This beast will die and maybe some of the other physical plagues too. Keep us posted, eh?

Christine

JimmyK · Guru

Sorry John, better days ahead!

Y'all drinking enough water?

JimmyK

JohnAnton1 · Veteran Member

I figured that i would jump into this thread too. Day-14 tomorrow on Zepatier, last night real bad abdominal pains, feels like here comes the Diverticulosis again, had this more than once, this year. Cypro and Flagyl usually clear this up in 10 days. So I called my Gastro- she resigned, need to find another one- this sucks - then called my Doctor- he prescribed the Flagyl and Cipro ,for Diverticulosis , then I called my Pharmacist and asked him can I take those medications with the Zepatier. He told yes I can take the meds without interfering with the Zepatier, the combo just make me sick to my stomach, and oh here comes real horrible headaches from the Flagyl.

Well, I will go back to this office where the Gastro just up left and no one even called me to let me know that.... and roll the dice for another pick of the litter to monitor me. Sad.

I hope you feel better my friend. I'm moving forward just a bad day, I guess

Canuck · Guru

I know 4AM well.

I am very relieved on many counts (for you) - one ... that your GP TOLD YOU to stay home! Yay - somebody needed to tell you! (I only mean that in the kindest way). I had a niggling worrisome feelings about your hx of fever(s) thus why i kept prying prior - I was glad you had the blood cultures done in the ER that day! Now that we are connecting the dots, fever, blood cultures, staph - I am VERY relieved you are on antibiotics now!!

2.5 grams of tylenol is about 5 (extra strength) 500 mg tabs per day? (not counting the tylenol that may be in your norco). You do need all of the drugs you currently have been prescribed for symptom relief and tretament, but Tig is right, between you GP and the hep doc, they can tweek which are the least harsh on your liver. I am banking on, that with a couple days of the antibiotics under your belt, perhaps your fevers will start to resolve and thus the extra tyenol will not longer be required as much. I would never discourage you from taking any kind of analgsia drugs they prescibed you, as i think you may be reluctant to make use of them, thus not getting much relief.

Antibiotics, use of your drugs at hand, REST, no work, (2!) infections clearing, and your body finally getting used to being on ZEP, and, winning the viral war - I am betting things will turn around pretty soon. smile Better days are coming.

"Wall hitting" is a personal experience and judgement - only you can decide - or, your body does for you - but i would safely guesstimate you have been repeatedly bumping into that wall (for some time now)! One way or the other, your are well bruised

What the worst that would happen if you took a really good wack of time off work? Not just 2 weeks.

What would you docs prescribe, to help you sleep, if they knew you were getting inadequate sleep and rest? Rest, sleep are very important components of body repair as you already know.

Are they going to repeat the blood cultures?

You have quite a few things going on right now, I would not object to extra CBC with dif, and CMP - but, if BOTH docs know EVERYTHING that has been going on with you, what you are taking, your symptoms, and how you feel, and they are comfortable no doing the extra bloods, then so be it.

Surely your GP has the sensitivty by now? I would phone and double check what your staph was sensitive to, and that they have indeed got you on the antibiotics suited, that no chnage will be required.

I hope my droning on, and on and on drives you to sleep my dear. wink C.

wendyo · Guru

Hey lady! So glad you saw the doc and you are getting the rest you need. Try some chamomile tea in the evenings.

MyMallards · Member

I failed to answer your question Canuck, about how long I've had the fevers going on. It's been almost 3 weeks. I have a tendency to wish away my symptom. I wished real hard too! Ha! Now I wish I hadnt waited so long to start antibiotics.

Currently wishing I could sleep. Recognizing a pattern though. 4 am is my new norm for finally drifting off.

-- Edited by MyMallards on Wednesday 31st of May 2017 03:42:18 AM

Tig · Admin

Any yogurt from the grocery store should contain live culture. The Greek yogurt does, too. It's always listed on the side if you're not sure. I buy the store brand, so it's readily available. I highly recommend it and your other end will thank you for it!

Take care and watch out for that rumble down under! A word of caution: Never trust it to be "just" a little gas... wink

MyMallards · Member

I appreciate your warnings. I also welcome your Blunt-ness. That stuff will kill brain cells in a hurry. ;) So, excellent idea to alternate Tylenol with aspirin if my liver will like it better. Yes? Not on any blood thinners. I was in excellent health before everything started to cascade last fall. At least that's my illusion and I'm sticking to it!

Not sure where to buy 'live culture yogurt.' Does Greek yogurt count? Is it typically avaliable at a big grocery store or is it a health food store item? I'll take some Culturell while awaiting an answer. My belly is rumbling and I never rumble. I thought it might be the famous Harvoni train just passing through Zepatiervile but now I'm not so sure. Charmin Ultrasoft at the ready.

-- Edited by MyMallards on Wednesday 31st of May 2017 12:36:15 AM

Tig · Admin

Hey Christine,

I'm glad your PCP (that stuff is illegal wink ) sent you home for a week, excellent! I like that extra rest and caution at a time like this. Good call, imo!

2.5 gms of Tylenol everyday is a lot for somebody with a wounded hepatic system. Since it's for fever reduction, can you take plain old ASA instead? Or switch it up? Are you currently on any blood thinners? If you're going to require an antipyretic, lower doses of aspirin might do the trick. If you can use it... There's another question for you! Your doc is going to love us, lol!

You need to get right out and grab a case of live culture yogurt and/or probiotics as you embark on the Augmentin adventure. You may also want to get an extra couple of rolls of Charmin, just in case. That stuff loosens the goose... You're among friends and we will talk POO when necessary!

Get some reading material and a jug of water before you hit the sheets. Plan on getting some needed rest and work on getting that fever/infection under control. We'll be checking on ya!

MyMallards · Member

Yes! I'm shooting for a really big ZERO!

Today I was called at work by my PCP. Was sent home with orders to go to bed for a week and then we'll talk. Hmmm. I may have truly hit a wall here...or the wall hit me? Megadose of Augmentin for at least 2 weeks. I did call the specialty pharmacy before taking the first dose because nothing is going to derail my Zepatier treatment! Not even dying of a bacterial infection. Ha! No problem with taking both says pharmacist.

I'm taking a total of 2.5 gms of Tylenol daily and that's keeping my fever mostly just under 100. I don't want to unnecessarily tax my liver you know. It's a balancing act. Also, I have only the barest of info on the blood cultures. No pluses and no sensitivity. I only get a little info through the patient portal. Just what filters through. It's odd how we still limit how much we allow people to know about their own bodies. Today didn't feel like the right day to battle for more information but I considered it for a minute. Ha. Someday I'll wrangle it out of a hapless medical assistant when no one is looking. I like filing my records in a growing 3" binder.

I did talk to the Hep C clinic about my recent LFTs and I don't need to repeat them Thursday when I have my 4 week VL drawn. I thought that was reasonable of them. I love when medical professionals are reasonable, don't you? Funny how we nurses don't clump ourselves in with the lot of them. Nurses are separate, special and oh-so reasonable. Must say though, I have landed in a really wonderful clinic. The carpet is frayed but the staff is knowledgeable, efficient and compassionate despite being overwhelmed by a massive Hep C population piling up. They are literally piling up in the waiting room. What in the world is going to happen when all the baby boomers start getting tested as per the constant Gilead commercials?! I hope they DO but I can't picture how they'll all be managed. Eek.

I think someday, if possible, I'd like to help in an overworked clinic with bad carpet and good practitioners. I could pass out big glasses of water, water, WATER to babyboomers who've exited their closets.

So grateful to have y'all. It might be too soon to say those three little words but I think I do.

Tig · Admin

I have a feeling that viral load is going to be a bit FAT ZERO!

Canuck · Guru

Great! 2 kinda "improved" days (in certain important ways) in a row?!! biggrin

Hm, so your preliminary blood culture report returned ... did it say +1, +2, +3, +4, or give any clues like that? Are you still febrile, and what has your fever been running at and for how long?

I could find no contra-indication for antibiotic use while on Zep, except for one antibiotic called "nafcillan" where the interaction might cause a decrease in the uptake of the Zep.

Without knowing more (just hearing about your hx of fever and a positive blood culture), if your family doc is looking to antibiotics (I myself would welcome antibiotics if I was febrile with a positive blood culture), I am sure he/she and you will run it by the hep specialist as well.

Your pain medication also contains tylenol as well, right?, so, may be explaining some downs in any otherwise constant fever you may be running? No idea how much anti-pyretics you may be taking though.

All just a big bunch of guessing from my end.

I know you will get right on it and check out what the family doc thinks about your blood culture.

I'm glad you got another small sunny reprieve today with your friends - you well deserve that. smile C.

MyMallards · Member

My plan for tomorrow is to check with Hep NP to see if I can get LFTs held and get just VL.

Also got positive blood cultures in ER -staphylococcus warneri. Haven't seen sensitivitys yet but need see if my PCP ellects to treat this. Perhaps that would resolve the fever and keep me clear of more feelings of truck collisons

Another relaxing day in the sun with friends today really lifted my spirits!

Hope your holiday weekends included moments of great deligh!

Christine

Canuck · Guru

..." my 4 week labs that are due this week. Is it reasonable to ask my Dr. if I can skip the CBC with dif and CMP because I just had those done in ER a few days ago at 3.5 weeks. I would like to just get the HCVRNA Quant? The goal is to save money and blood" ...

Yup, considering they were done fairly recently ... I would ask the doc your question (given your considerations, especially if cost is a concern), and then just leave it entirely up to him - if he is partial and feels he wants a look at all again (or more), so be it, you gotta be poked regardless of how many vials they take - I don't know costs, but as far a tests go, these are not thee most expensive tests you can have, the PCR is I believe the most expensive one.

Personally, I would err on the side of too many bloods being done (but that's just me), I liked the constant feedback I derived from my very frequent testing regime, I found them reassuring and affirming - besides, I am not sure how many more blood drawing opportunites you will be having "in total" over your next 12 weeks, when and what they will be comprised of. The more info the better, is my theory.

Re: your other question about severity of illness and direct relationships to how elevated your pre-treatment VL or LFTs appear? - Tig and others have seen folk here with low or within normal limits LFTs, it did not mean they were not being severely affected by their HCV. If they could mainline us, every day, for weeks/months and years on end, I am sure we might see many fluctuations in VL and LFT's and in other bloods as well. When things are elevated, you still may not "feel" a proportionate negative, and visa versa. Everyone is dif.

I did not understand VL "fluctuations" (until I came here) - I was confounded when my VL (about 6 months prior to treatment) was about 10 million, then, just before treatment, it dropped to less than a million! Confused me. With lots of expereince and advice I recieved here, I got it figured, and with much reading (in my spare time) I have gleaned the "amount" of VL (at one particular pinpoint of time in an untreated person) is not so important - one is still very much harbouring an active HCV infection.

Unless you have some past LFT's and VL's to compare against you will not know how much they "may" have been fluctuating (up and or down) over the years - your body has been trying for many decades to react and deal with this invader, onging bloods, over long periods of time, may have revealed the struggle.

As far as "severities" Tig well outlined the generalities of using elevated ALT's as markers of inflammation"spikes". You can still be very much sick and infected with HCV and show low LFT's at times.

Very high VL's perhaps are still considerations when choosing treatment drug regimes, and possibly in how infective your blood is to another, ie. should one donate a bag of blood when you are at 10 million VL, are you potentially more infective than a bag from a person with a VL of 12?

I am very glad to hear of your happy distractions, very good any things you can do or can think of that will help. smile C.

-- Edited by Canuck on Monday 29th of May 2017 11:00:43 PM

-- Edited by Canuck on Monday 29th of May 2017 11:47:15 PM

Observer · Guru

What a lovely day you had!

It's always difficult to let others do the work when you're obviously a worker bee type gal, but I'm really glad you just looked after yourself.

And kids playing in mud is good for every body's spirits. Mud, mud, glorious mud.... biggrin

and a year of fallow won't hurt your garden at all, might even be good for it. Next year you will have lots of energy for gardening.

Alison

MyMallards · Member

I had a better day today and I blame all of you! Information is always a stress reliever for me and I can never get enough of it. I don't even understand the concept of TMI. Really helped me to read the enzyme link, Tig and get some reassurance that I have what it takes to Do This Thang! Smiled to see Alison's VL history and success. Canuck, you have a way of making me feel like a big badass warrior who's getting a needed hug.

Understanding that attitude always matters, I'm alarmed by what pain can do to send mine spiraling. My sponsor is always reminding me that I can change my attitude with action. So today I took a couple actions (initially against my will). Invited my kids and grandkids over for a cookout and let them do all the meal prep, grilling and clean up. Very weird to sit still and watch them do it. Just kept my feet up on the deck recliner and pounded the water. Not sure I can get comfortable with that but it is what it is for now. It was nice to have the house full of life and the yard full of kids taking mud baths with the hose in my raised garden beds. (Have decided that it's okay to skip the vegetable gardening this year.) After they left I painted my toenails- an action intended to show love to the feet that are a focal point of the pain. Teeny actions but its something.

So I have a question to pose about my 4 week labs that are due this week. Is it reasonable to ask my Dr. if I can skip the CBC with dif and CMP because I just had those done in ER a few days ago at 3.5 weeks. I would like to just get the HCVRNA Quant? The goal is to save money and blood but if the exact 4 week mark is sacred, I won't even ask.

Happy Memorial Day and thank you Tig for your service.

Christine

-- Edited by MyMallards on Monday 29th of May 2017 02:36:30 AM

Tig · Admin

Hi Christine,

Sorry to hear you're feeling like Poo You've got several things going on at once and that doesn't make things the least bit better. I'm glad to read the strength in your words though. You have what it takes, we can see that and I hope we can do or say something that will bring you some relief. We're going to try!

I am including a link below that is a real good explanation of how HCV affects the enzymes. It's fairly basic terminology, but answers your question on whether they enzymes show damage. They definitely show injury, but to what extent is left to further testing. The ALT is a good indicator of inflammation and you will often see it rise when the viral load spikes. Some will feel that dull ache under the ribcage during periods like that. The capsule expands and it can hurt. I suffered with that and since SVR, it has left the building. I expect you'll notice a difference as well. There are many manifestations that occur from this disease, some very mild, some not so mild. There were times after I achieved SVR, when I realized some things weren't bothering me like they used to. A sore joint or itching, among other things, disappeared without notice. One day I thought, damn, I haven't felt that for awhile! It's worth looking forward to. Nothing happens overnight, but you know that. Medical people know too much, lol! They are also educated, realistic and forever hopeful. It's what gets us through some days...

Hang on to the knowledge that you've got a Dragon in full retreat right now. Keep popping that pill and guzzling the water. Remind yourself, each drink of water is extinguishing a wild fire, the Dragon's Breath I call it. I agree that it might be an excellent opportunity to take some time off. Even if you can cut your hours in half would help. The FMLA is an excellent idea and will provide you the freedom to take care of business if needed. Business being you....

HepC Liver Enzymes

2015-08-30 08.37.36.jpg

Observer · Guru

I had VL over 5 million, then 3 months later it was 3 million then I didn't pursue treatment or test again for many years...then just before treatment (Dec.2015) it was 'only' 700 Thousand-ish..

but now it's ZERO...and soon yours will be too.

A

Canuck · Guru

Sorry for these days - it WILL get better! Believe me. You have strength, knowledge, you have proven yourself to be as tough as tough can be, you have the right attitude - those things counts so much at times like these - you WILL weather this, eventually, there will be an end to days and times like these.

At times, I felt a hopeles crumpled mess, thought to myself "when will this ever end", always felt too hard, too long, but ... it did end, and bit by bit, the drugs did their part, and bit by bit the negatives slowly started to lift, little by little I could find repair going on, and still do. Journey's for some are harder than for others. Some days my "hope" was all contained within that pill bottle! And just like you do, I tried my very best to dwell on anything positive, that helped too. Someday (not so far away) you will be gloating over small improvements you glean. These first promises of hope are slivers to hang onto and savour, as one builds to another, like your first gimpse of your declining ALT/AST!. Being able to come here and vent and share helped me (it still does!). My friend/and partner was an immense support for me too. Sometimes just the smallest things helped. If nothing else, you can be assurred that we will always be here for you.

I just hope you start getting a break from the odd thing, even if just now and again, sooner than later (like how about right now would be nice! - just one good sleep, just a little ease-up on some of the things you have been experiencing for too long and too hard.

I am glad you are off at home this weekend, I am glad you tried to take more of your meds, I am glad you have that leave ready and at the wait. Keep considering your work options and how much you can be expected to do, and how much you are expecting from yourself. If ever a leave was justified, would this not qualify?, in anybody's book?, especially given that you have an opportunity to do so without penalty, except for the temporary penalty of not being able to do what you love, and wish for, for a period of time? Health trumps all in my book.

The last 9 months (and prior) have been hard on you, it has "compiled" to fulminant in conspiring against you, this bit is also hard, all the more reason to do anything you possibly can to try to orchastrate some easing - using leave, more meds/perhaps dif meds/or a tinkering of your meds, any creature comforts that will help relieve stress and pain and demands of you. I certainly hope you have some family or freinds who can support you a bit. (I really do think you might start getting wee breaks from the odd thing soon - that is what I expect and hope for).

It is my understanding that type II mixed is thee type best associated with HCV, and glad to hear your docs reiterating the "other association", that with resolution of HCV there may be resolution and improvements seen in type II mixed, sometimes marked/complete! Something very much to look forward to.

We have had some here on this site, with differing extra-hepatic type maladies, mostly all easily related to and associated with having HCV, and many who have seen resolution.

One step at a time, first we just have to figure out how to get you feeling less horrid, and the sooner the better!

How does you fever go?? C.

MyMallards · Member

Have been reading some other threads/bios and I have a question. Are pre-treatment VL and LFTs significant indicators of how sick our livers are? My levels were wimpy compared to many others here with a VL less than a million. Or, are value reductions with treatment the main thing? Perhaps you can point to a thread with the answer.

Its approaching 4 am and again I'm not sleeping. I recognize an unhealthy pattern here. I miss the days when I'd just drop into bed and be out like a light. Now my body won't "go" but my mind won't "stop."

MyMallards · Member

Oh, friends, I desperately want to report something positive I really do, but today I can't find it. All I could do today was make it to the couch and a couple of runs to the kitchen for water refills. Not exactly runs, more like shuffles. Pain and fatigue are killing me here. Maybe the good thing is that it's the weekend so I don't have any guilt about not being able to work. Btw, I filed for FMLA months ago after I got the rheumatoid diagnosis so at least they can't fire me for absences. I work for good people who appreciate me but I like the assurance. My PCP is the one who encouraged me to file even though the paperwork for her is her "least favorite job." I'm sure she'll just love the disability forms! Yikes. Haven't mentioned before but she originally sent me to a Rheumatologist who in turn sent me to the Hep C clinic and a hemo-oncologist (for the cryo workup). Rheumatology won't treat me for RA until I complete Zepatier and hemo-onc doesn't want to see me again until I finish the Zep either. Both specialists were hopeful that my joint and cryo pain might lesson with hepatitis cure. It hasn't lessened yet and today I'm struggling to hold onto hope.

Didn't get to sleep last night til 4 am despite throwing all my meds at the pain. Norco, neurontin and restoril. It's crazy. I'm a total lightweight with drugs and in my other life I'd be unconscious with all that! It's a long and lonely night when you're miserable. This does help though - writing these long narratives and feeling understood. It's so disorienting to be grabbed by the throat by this beast. Feels like a sneak attack and that pisses me off. Nevermind that I knew it was lurking for 30+ years. Hopefully I will have the opportunity someday to encourage someone to come out of closet of denial sooner than I did.

I have read and re-read your posts about listening to my body and not pushing it. I believe I've hit a wall here and denying that the wall is hard is probably not going to work too well. It really hit me that my body can "demand and dictate" what the limits are. Whoa. It feels true. Must try to get my mind in alignment with that. Pretty sure the Serenity prayer will help as it has for me in the past. "God grant me the serenity to accept the things I can not change..." while I'm courageously changing the things I can. Go Zepatier! Go me. Go Hope.

Thank you again, pals, for being out there somewhere.

-- Edited by MyMallards on Sunday 28th of May 2017 02:23:19 AM

-- Edited by MyMallards on Sunday 28th of May 2017 02:24:42 AM

wendyo · Guru

Hey Christine,

Glad you went and got some help/relief AND were treated with some good news as well. WOO HOO on those liver enzymes. Suggestion.....see if doc will write up paperwork for FMLA. That way if and when you need a day off, you are protected. Just sayin'.

Canuck · Guru

Oh dear, I was hoping the fever thing had just somehow luckily resolved - (thanks for sharing all the info BTW - I know, I pry) - your situ does sound very unpleasant and you must be made of very tough stuff (and given how much you have been having to deal with, it is good thing you are made of tough stuff!). Sorry today turned out the way it did too, very unfortunate, but ... I am glad you all tried to get some intervention/treatment, answers.

I am glad you have a back-up plan B in the waiting - you will know what to do, if and when the time comes - you have been stoicly rolling with the punches, listen to your inner voice, when you hit thee walls you will know it - the decreasing of hours (whether wanted or not) from a heavy 40+++ to a 30 hr week does NOT seem unreasonable, AT ALL!, (understatement), given all of your physical reasons, those that are telling you not to push it nor yourself. I cannot tell you what to do - but i am worried about how much pushing you can do under your current circumstances. It is a hard thing, to be objective with yourself (like you were saying - as a nurse what you would be saying to your patients!), as far seeing their needs for rest, pain relief, meds and no work.

I caved during treatment, had to, no choice in the matter, "it" just took it's course and I had no choice but to go with the flow. I had good support and no demands, so that made it much easier. I did not feel badly at all about cooperating with what my body was demanding and dictating - just had to knuckle to the body's program. "Un-relenting/exhausting" are key words here for you, as are, "insomnia and pyrexia", words that are important to hark. Thank goodness you have the gaba and norco at hand, and possibly an avenue for time off.

That was a pearl amidst a bad day tho!!! - your ALT more than halved!, and the AST correspondingly dropped! Telling indeed! biggrin And, amazingly you withstood the insult of a rapid 2 litre infusion on top of your voluntary oral intake! Could be your fever (I don't know how much it is spiking, running, vacillating), it may be enough to allow your body to be demanding/tolerating more volume than expected without overload! (What are you thinking is the most likely reason for a constant or undulating fever??)

I can only hope (being that you are just finishing your first 4 weeks in) that "some" of these things that you are feeling will lessen, as you get beyond the first hump of treatment.

Sorry for your bad day, but glad you at least got to know of the drop in your LFT's. Hang in there, I think you are doing a super job under very trying circumstances. smile C.

MyMallards · Member

Thanks, Canuck, for your sweetness. At least it felt sweet but I could be wrong. Ha! My emotions are all juicy lately. Will have to research to see if that's a symptom or a side.

Today was rough.

To answer one of your question, yes I am still trying to work because I'm stoic by virtue of my Dutch/German/Irish heritage. (Someone dead must take the blame.) I used to be the 45 hour week nurse with plenty of energy to spare. That was before the crash last fall with the RA and cryoglobulinemia diagnoses. The pain and fatigue is unrelenting. Now it's a success to patch together 30 work hours a week. Have started an application for long term disability under my employer provided plan just in case. (The thought makes me gag.)

So today, I woke up exhausted and stiff. Like the tin man in Wizard of Oz. Tin nurse? Had to call in late but made it in by 10. By noon my fever was climbing and by 2 I was in ER at my PCP's insistence. I might be overdoing it. You'll be happy to know, because you're sweet, I think, that I got a quick 2L of IV fluids on top of my already ingested half gallon of water.

I also got blood cultures and a bevy of labs before they released me. Warned lab staff about my hep C and they were reeeal cautious. Ever feel like a leper? Apparently I don't have pancreatitis. Yippee. That made me laugh in a just-this-side-of-hysteria way. Hey, I definitely need a case of that right about now! (Picture my jumbo eyes just bugging OUT as I consider that scenario!)

So nothing really came of it besides more tiredness and an undiagnosed fever. Note, however that fatigue doesn't lend itself to sleep. Just love how insomnia gives me so many more hours each day. Ha. But, and here's the silver lining....wait for it... I did get some nice ALT/AST results. Since starting Zepatier 3 weeks ago my ALT has gone from 33 to 15 and AST from 39 to 27. Ta da! I'm considering that a win -just for today.

To answer your questions about my rheumatoid/cryo type 2 mixed, I'm taking gabapentin for the neuropathic pain and Norco for the muscle/joint pain. Not too much because I'm stoic. Probably not enough because I am never comfortable. If I was my nurse I would make me take more! (Do you ever have that, when you write something down, you see your own crazy thinking?!) Oh well, I forgive me. I'm doing the best I can.

Tig and Wendy, you were sweet first. I haven't forgotten that. As in, my memory isnt completely gone yet - just fuzzy around the edges. Thanks all for your interest and encouragement. It helps, it surely does. May God be sweet to you.

Canuck · Guru

Hi MyMallards,

Welcome to the forum. This is a good soft place to land for company (I have found).

Love your sense of humour (despite all).

I'll bite - to try to answer your question? .... (I've never been much good at problems tho), I would hazard a guess that the correct answer is ... one gal? I'll probably be wrong again!

Glad to hear you are 21 days done, no sides (that can objectively be discerned), and that you are doing the required water "time", but sorry for what else you have been experiencing.

We have had a few other about here with cryo involvements, auto-immune things, and/or extra-hepatic manifestations of all different sorts, and with the annihilation of our HCV, we might also look forward to spontaneous/evolving resolutions to these, as well as liver regeneration/recovery, reductions in fibrosis Fscores, and more. Cryo testing is not a straight forward thing to fathom (for me) type I,II,III and severities - all I know, is that some types can resolve when HCV resolves.

Are you having to work all the time, no mater how you have been feeling? I hope you can take time off, when you feel it warranted. Rest, as you know, is important too, especially that you mention your sleep disturbances.

Did you ever get to the bottom of "a week of fever and chills" you mentioned in your first post? I hope you are not still having fever and chills?

Did your doc say what you could take for body discomfort/sleep? What's "on fire" and what "hurts"? What were his recommendations for your rheumatioid factor?

I guess you will be seeing the doc quite soon, for a 4 week blood draw/check-up?? What blood draw schedule has been set up for you during this 12 weeks? VL at week 4 and week 12?

Hope tomorrow is a better, easier day. smile C.

MyMallards · Member

Do you, my new best friends, have any idea how MUCH water fits in a gallon?!

Tig · Admin

"It's a damn lonely disease when you're hiding from the truth. " That's the truest statement all day!

I like your attitude! I think we all spent a good portion of our infectious days repeating the same mantra, "That Dragon won't get me"! Yeah, right.... I know that cold realization when it hits. Well, don't be too harsh on yourself, we all road that same train and despair turned to ambivalence and to outright denial in many cases. But then the day came when the majority of us realized while we were denying the truth, that fire breathing lizard was kicking our liver's tail all over our abdomen. Can't worry about that now. What we can do is kill this thing and move forward with the opportunity to do some healing and educating others that nice liver enzymes and no symptoms, doesn't mean the absence of problems.

Just keep positive and sharing that smile. You're going to be fine and we're going to enjoy sharing the journey with you.

MyMallards · Member

"I will get my life back. I will drink insane amounts of water." Repeating this ad nauseum today! :::glug glug:::

While living in the Denial Closet I muttered "Dragons aren't real" or "My dragon is small and tame, it surely won't hurt me." As a nurse I had witnessed what interferon did to some patients and I was more terrified of that than the virus. Basically I was too chicken to try the treatment and it was off to the closet. Hats off to those here who demonstrated bravery back in the bad old days. If I only had to take 12 weeks of easy street pills I'd consider myself a wuss, I guess. However, taking up the fight so late with a badly burned liver and cryo to boot, well, just could be a opportunity to reform my sissy ways. Haa!

Thank you for your generous support and stories. It's a damn lonely disease when you're hiding from the truth.

Tig · Admin

Hi Christine,

Welcome! I'm glad you came out into the light, too. Looking at your signature and history explains why you're not feeling well. The joint pain especially. You asked if this can hit you like a hammer after years of nothing. That answer is a clear YES!It's high time to get rid of this beast!

Once decimated, you will certainly begin to feel better, but with the number of issues you've been dealing with, it will take time. You need to stop this thing now before it has the chance to make things even worse. None of us want to see that happen. Zepatier should do the trick!

If you've been reading the forum, then you know you need to be drinking lots and lots of water. A gallon per day is the rule. It will help the headache and fatigue. These drugs can dehydrate you quickly, believe it!

wendyo · Guru

Welcome Christine and glad you decided to come out of the closet

YES you will get your life back.

Hope you are drinking plenty of water. If you have sides or not, it will still help flush your system. As HCV is a slowly progressive disease, what you experienced is normal.

Others will be along shortly to give more feedback.

wendy

MyMallards · Member

Peeking out of the closet -on Zepatier

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