Hep C Discussion Forum

Shemp · Senior Member

RE: Mavyret and Me

Canuck · Guru

ew. flu's. yuck. Really too bad. ya, the epsom salts bath sounds therapeutic, maybe. Water, in all forms, from immersions to heat paks to drinkable, you think would be helpful. Here's to short lived afflictions, I hope mighty short. C.

5-1-18 · Guru

get well soon shemp and tig. take it easy and hydrate... smart water is easy

Hoodietree · Senior Member

Hope you feel better soon Shemp.

Agree with Iris and everyone else, good call on nixing the abx. Curious if you got a flu shot this year, just as a data point. We can still catch random flu strains, right, even after getting that precautionary shot. no sense borrowing trouble but of course I always worry.

Will have to keep Iriss recipe handy just in case

Let us know how youre doing, k? Check back in so we can give you hair pats and virtual chicken soup

Tig · Admin

Hey Shemp,

I agree, give the antibiotics a pass. Iris is right, taking them for the wrong reason will cause all kinds of hate and discontent within your system! I have been down with a nasty chest cold all week, so I can relate to the feeling you’re having. I don’t get sick very often, but when I do, I don’t screw around! I hope you’re feeling better soon, Brother...

Shemp · Senior Member

Thanks Cheddy,I didn't even want to think FLU.But I can't ignore the symptoms.I do have a nurse advocate from Abbvie.Guess I give her a ring.

Cheddy · Moderator

Oh no. The worst day. Well, it does sound like you are describing flu symptoms - fatigue, achy bones, even the teeth. I had something similar while in NYC. It was quick, except the fatigue.

I agree completely with Iris' comments below. Antibiotics are for infections, not viral illness, and you need a full run when you do take them. Otherwise the infectious bacteria can become resistant. Her recipe sounds like a really good idea. Personally, I would take ibuprofen, too.

Beyond that, I don't know what the specific drug interactions with treatment (say Theraflu or the like), and specifically the interactions with Mavyret. Do they have a number you can call?

Well, Shemp, you're near the end. I was hoping you would skate through, but your whole body is getting hit with a powerful treatment ingested specifically for the liver.

Ray of sunshine: less than 2 weeks to go! Then the next level of healing begins. It's not for the faint of heart, is it? I just crawled over the finish line. Then I saw the entire sun.

Hang in there - and REST! I recommend old movies or audio books for distraction. An epson salt bath might be nice, too.

Note: when I go into a clinic or even on an airplane, I use the hand sanitizer around my nostrils in addition to my hands.

Shemp · Senior Member

Thanks Iris,I really didn't think antibiotics was the way to go.You know how it is when you're feeling bad.just looking for a ray of sunshine.

Iris Dragonfly · Guru

Ikes!!!, do not take the amoxicillin! Antibiotics are only for infections and the full course must be taken when prescribed. If you have leftovers someone did not take all of their Rx as prescribed. Taking antibiotics when not needed creates resistance to them.

You likely did pick up a bug at the dr. I cannot say for sure what kinds of over the counter cold meds are ok. But I'll tell you what I took a few times to nip an oncoming cold in the butt while I was on treatment, or even after one is ill... take a glass of water and put 1 tablespoon of honey, 1 tbs. lemon or lime (fresh squeeze), 1 tbs. cider vinegar, a pinch of salt, and generous (as much as you can stand) cayenne pepper and ginger. (I used powedered) stir well, and down the hatch!

Hope you feeling better soon! And thanks for the B-day wish, bb, Iris

Shemp · Senior Member

Happy birthday to all,and a belated happy thanksgiving.I was really out of it yesterday,worst day I've had in 10wks.I don't know how much of may be sides related.or if I'm coming down with something.I did go to my Docs office Monday.I don't like dr's offices(too many sick people).Since them it's been a slow slide downhill.Very fatigued,every bone in my body hurts,my teeth hurt and I have a low grade fever past 2 nights.If I am coming down with something,I don't know if I can take anything for it.I have some amoxicillin,and there are no drug interactions I can find,but do I really want to do that?I'm hoping this very learned group can shed some light on being sick while in TX.I have 13 days to go and am determined to see this through to the end.Any insight would be great.

5-1-18 · Guru

Shemp wrote:
Had my follow up Doc app.today and he didn't tell me anything I didn't already know.Enzyme levels good, and undetected.He doesn't want to do bloods at EOT because he says the new DAA's are so effective it's not necessary.Mid March will be 12 wks after EOT so i'll just have to wait till then.17 days to go.

they did that to me too. tested UND at 4 weeks then told to wait till the 3 months eot. it was still UND, so i think they are finding new standards for testing.

Cheddy · Moderator

Yuck. I hate waiting, but I see his point. The space between EOT and SVR12 can leave you hanging. For some people it's an anxious time. However, I am pleased to hear that we have reached a point in time where DAAs are are becoming so reliable that a doctor can feel that confident. Personally, I would insist on the test as kind of a chill pill. One day, we will panic no more - sigh.

Yeah NYC is overfilled maze. No way I would drive there and I'm glad to be in the peace and quiet of my own home.

Thanks for sharing your love story. 35 years of friendship is a remarkable thing.

Get some rest, pal.

Shemp · Senior Member

Had my follow up Doc app.today and he didn't tell me anything I didn't already know.Enzyme levels good, and undetected.He doesn't want to do bloods at EOT because he says the new DAA's are so effective it's not necessary.Mid March will be 12 wks after EOT so i'll just have to wait till then.17 days to go.

Shemp · Senior Member

Thanks for the warm welcome back.The truth is she doesn't push me at all.The honey -do list is more of a things I've been meaning to do list.She was my co-driver for 12 years,and understands that my life on the road isn't exactly(as seen on tv).When you spend 24/7 in a confined space that doesn't stop for 3 days except for fuel,you better be really good friends.Been that way for 35 years we've been together.So get that image of a cruel woman with a whip out of your heads.Hmmm.I won't go there.So this week no schedule, no hurry,no worries.

Hoodietree · Senior Member

Welcome back Shemp! Glad you and your wife are on such good terms that the honey do list is something you like to do or at least arent complaining about too terribly much. Thats really nice

5-1-18 · Guru

welcome back shemp. i'm so glad to hear you had 6 good days and only the one bad....... and that you drove thru tx like a champ

i hope you have some time off before your next trip and can just relax a bit

Canuck · Guru

Jes splain to her, that we all keep pushing you and saying to you, that you simply must keep trying to pace yourself, get decent stress-free rest periods (during work and at home) that allow you best to cure/ heal, and deal with the viral war and aftermath you are going through, and to retain some reserve for yourself (physically and psychologically). She should understand, just explain it to her, your temporary needs. She wants you to be well too, it will not be must longer that you will be under the demanding/duressing effects of this cure, and not too much longer after that, that you will be in a recovery period. You should be the priority right now, as much as possible (not things, duties and obligations), this process of getting rid of the hepc will not last forever, this is temporary, after recovery you will have the rest of your healthier life to catch up on what needs to get done. Keep trying to conserve, pace and treat yourself as well as you possibly can.

Your comment about it being cold/rainy, and that influencing you to not want to drink water on days like those? ... if I heat my water (on cold rainy days), it being hot/warm, I found that I welcome the water more that way - soothing, warming. smile C.

Tig · Admin

Enjoy your week off, Shemp! Sounds like you need a rest, but I’m not sure a honey-do list that long will allow it. At least all that work will be on your time and schedule, not dispatch. Momma might drive you harder though, ha, ha! I know you’ll prevail

PS: Coffee counts as water, just control the caffeine. Actually, coffee is extremely beneficial to the liver!

Shemp · Senior Member

Thanks Cheddy,It was pretty much the week from hell workwise.7 days 2900 miles. Left the house last Sat.night.3deliveries in NJ Mon.3 in CT Tues.Back in NJ Wed.to reload and back to FL for Fri.Healthwise it was really good.6 good days 1 bad.I'm starting to sleep better.As of today I have 19 days to go.I have a DR app.Mon to tell me what I already know.Who knows maybe he'll tell me something I don't know.Pretty sure the bad day I had was because it was cold and raining and I didn't feel like drinking water.Anyway,thats past and I'm taking off next week.I have a honeydo list as long as my leg.Been putting things off for the last 2 months.Sorry to hear you're in NYC in the snow.I left the northeast just as it was coming in.The city is brutal when it's 85 and sunny,cold and snow puts it over the top.Try to enjoy!!

Cheddy · Moderator

Welcome back, Shemp. How was the drive this time? I hope you can rest now that you are home.

Any better luck with the sleeping? Do you have another drive lined up? Am I right that you have less than 3 weeks to go? I make it sound like a short time, but I remember that it feels like FOREVER when you are struggling to get through the fatigue. I couldn't even climb the stairs on Sovaldi/Ribavirin, but you have done as well as can be expected, working and all. I trust you will enjoy many improvements after treatment. It feels fantastic just to be my old self.

I'm on the road, too. I was hiking in Zion National Park just over a week ago and am slogging in snow this week in NYC. I'm here for a family wedding. Then, at last, some down time at home. And no holiday stress for this girl. Nope, not doing it.

Let us know how you are doing. It nice having you around.

Cheddy

Canuck · Guru

Champ,

Go with your instincts or best guesses (until you are otherwise self-enlightened) ... if you think (are convinced) the wakefulness coincides with and is directly related to the max. peak blood levels of Mav, then perhap you are right (despite any opinions to the contrary from anyone) - i think your theory on wakefulness might be a plausible possibility. (You said you take the Mav at bedtime and then, 5 or 6 hours later, when the max Mav level occurs, that is what is awakening you at about 5 AM?)

Had you noted this possible co-relation sooner in the treatment course, you might have had time to experiment with changing around the time of day dosing of the Mav (extremely slowly, with the OK and as advised by your doc) to be an hour earlier every day until you were taking your bedtime dose to be (say) a supper time dose, then (perhaps) the peak blood levels of Mav would have happened earlier, when you were under the heaviest influence of your nighttime sedation, perhaps then not waking? It may be pulling straws (or counting sheep may be more like it! heehee) but ... just thought I would throw my 2 cents into the lottery of dose timing , ... it's kind of late now to slowly shift the time of day dosing for your Mav to be earlier.

Like you said, being that you have had a hx of sleep trouble, perhaps no matter what time of day you took your Mav and when it peaked, you might have still experienced sleep difficulties at night, hard to say eh?

I know you will keep trying to do the best you can to treat your body well. Just keep trying to get as much quality rest, de-stress and relax time as you can, even if the normal sleep quota is not at all cooperating. zzzz ;o

Cheddy · Moderator

Zolpidem makes me weird and groggy. I'm glad it works for you, but more than 5 hours would be better.

Yeah, you're probably right. The meds that are slaying dragons are bound to effect other areas, being so powerful. I'm glad you are able to take the good with the bad - no small feat.

I like hearing your resolve, Champ/Shemp.

Good to hear you got a good night's sleep. Wishing you many more.

P.S. Do you mean that cat that gets on top of your chest at dawn to ask for breakfast? I love that guy, later on.

Shemp · Senior Member

Thanks Cheddy,

I've had problems sleeping for years.Doc put me on generic Ambien it's called Zolpidem 10mg.No drug interaction I checked myself.I have no problem going to sleep but 5-6 hors later I'm wide awake.Not groggy,literally wide awake.I think it has to do with when my meds peak.Before I cleared the virus they were fighting.Now I guess they're kind of bored and they want me to wake up.Kinda like my cat.Had a good sleep finally last night and feel much better.27 more to go,no stopping me now.

Cheddy · Moderator

Dang it Shemp. I'm so sorry this is happening to you As Tig points out, it's a funny kind of normal to have these ups and downs. Thank goodness it's only 4 more weeks. Unfortunately that feels like forever when we are in the middle of it.

You've done so well on your treatment with food and water and a good attitude. Now we just have to figure out that sleep thing. Sleep is medicine. I can't imagine being sleep deprived and making long drives. No wonder you get worn out. I don't know what your sleep meds were before but do they work now? Are they compatible with Tx? Do they make you groggy the next day? Have you tried cal/mag? That helps with body tired but doesn't always slow my curious mind down. Lots of us have trouble with sleep so I hope more can chime in with what helps them.

In the meantime, rest whenever you can, even if you don't sleep. Find what keeps you calm.

Yeah, that Tig does run deep. It is like the tide, coming in and going out. Just remember, you're not in a boat! That's a big honking truck your plowing through deep puddles, and you know how.

At least here, you have the company of friends who know what it's like to go through this. I wouldn't wish it on anybody else.

Please keep us up to date. We'll be checking the tide charts.

Cheddy

Shemp · Senior Member

Hoodie,

Thanks for the kind words.Some days I don't feel like a champ but,this too shall pass.I never realized Tig was so deep.Words to live by.

Hoodietree · Senior Member

Hang in there champ! Im super proud of you and so happy that you joined us here with your marvelous wonderful attitude and your strength of character and fortitude.

iPhone auto-corrected your name to champ and Im just gonna leave it because in this case it is fitting

Tig I live this so much. The visual it evokes and the poetry of it, and also in a practical sense its true and right!

High tide may swamp you, while low tide might allow you to walk across the bay.

5-1-18 · Guru

i kept working too shemp, but luckily i had a flexable schedule and sympathy from my coworkers.

you are amazing! driving up and down the east coast while on tx. wow

we'll all be thinking of you in prayer and thots.

5

Shemp · Senior Member

Thanks for the support guys.27 days to go.Failure is not an option.I did notice once I cleared the virus there were some pretty dramatic changes.Most of them were good.I finally got more than 5 hours of sleep last night and I feel like a new boy.5-1 I wish I could take time off but,I own my truck,it's all on me.Heading north this weekend.I've got maybe two more trips before EOT.The things you do for money.

Observer · Guru

Heya Shemp,

youre almost on your last 4 weeks, eh? Sorry to hear the sides are coming back so much.

Thats a frustrating type of insomnia...my husband has had bouts like that...wide awake way too early for no good reason...I feel for you. He is like a zombie when that happens to him...

I have no helpful ideas, except perhaps magnesium...Thats good for the nervous system and helped me with my insomnia...although I got the kind that wont let me fall asleep in the first place.

You are a great dragon fighter and youve almost won. Try to take it easy

5-1-18 · Guru

hang in there shemp; you can do this!

have you considered time off from work with sick leave, medical leave or fmla as needed?

5

Tig · Admin

Hey Shemp,

I can’t compare what I was on with your meds, but I did notice, as do most people on treatment in general, continual metabolic changes during treatment. There are so many things happening inside you right now, the ones you feel and the ones you don’t. Trust me on this though, they are BIG changes and your body tolerates some better than others. That doesn’t mean anything except the drugs are working. We used to consider the worse we felt, the better the results! Thank goodness we don’t measure treatment success on the degree of side effects. I suggest you look upon these waves of side effects as you would the tides. High tide may swamp you, while low tide might allow you to walk across the bay. Before you know it you’ll be cruising high and dry on that boat, above it all... Hang in there, Brother!

Shemp · Senior Member

The return of the sides,

Fellow warriors,I need some insight from those that have traveled this road before me.I just finished wk 8,4 more to go.The first few wks were an adjustment.Nausea, anxiety,insomnia.By wk 4 they seemed to level off and I was pretty much ok.Wk 6 came and I got great news from the lab,actually had a few days where I hadn't felt that good in a long time.Wk7 was a slow roll downhill.Sides were coming back and I was just worn out.I had read on this forum that others had them return late in treatment as well.My biggest problem these day is sleep.My Doc had me on sleep meds before tx,but now it's just crazy.Now,I take my meds at night because of my work schedule.10:30 each night because my day is usually done by then.A little snack,meds bed.I'm up every day at 5 AM for no good reason.My eyes open and there is no hope of going back to sleep.I looked into Mavyret the other day and learned that it peaks 5 to 6 hrs.after you take it.Do you think that is what is waking me?I feel like the walking dead.My Doc and Abbvie are clueless. Any insight would be much appreciated.

Shemp · Senior Member

Hey thanks Canuck,I don't know how you got that recording of my wife.Maybe thats why I can't sleep

Canuck · Guru

Aw, lovely for you Shemp, your first UND!, just one of many more, you will be UND now for the rest of your life. Good-bye virus, finally! So nice for you to have this first UND under your belt, makes all the past strife and hard work and unpleasantness a bit easier to take, seeing some tangible results. And just look at those really nice, teeny, tiny LFT's - wowie, so nice and low now compared to before! It's a lovely crash!

You look great Shemp!, even if you feel like you have been dragged backwards through a rosebush. Your attitude, strength, LFT's and UND and sense of direction is very, very good. You will get to where you want to go. Soon you will be finished!!

Are you home for a while now, to rest up and maybe celebrate just a bit?

In honour of the great occasion of your first UND I highly recommend some nice long deep healing sleeps and/or as many impromptu naps as you can manage to fit it - maybe just the relief of reaching this first UND milestone will help you sleep a tad better tonight. Hope so. wink C.

Here ya go Shemp, this one's jes fer you - sleep tight. https://www.youtube.com/watch?v=wwxre4eFbb4

-- Edited by Canuck on Saturday 3rd of November 2018 03:19:09 AM

-- Edited by Canuck on Saturday 3rd of November 2018 03:40:13 AM

5-1-18 · Guru

Shemp wrote:
Thanks Cheddy,
1979 was when I got it .I was diagnosed in 2000.They offered me clinical trials but I couldn't get myself to commit to experiments.Really glad I waited,hope my liver forgives me.

really it's better that you waited for these new daa's cos they were created specifically for hcv.

your whole body and mind thanks you for waiting

Shemp · Senior Member

Thanks Cheddy,

1979 was when I got it .I was diagnosed in 2000.They offered me clinical trials but I couldn't get myself to commit to experiments.Really glad I waited,hope my liver forgives me.

Cheddy · Moderator

Nice numbers, Shemp!

40 years! Talk about waiting. It must have been a shock when you even found out that you could be treated at all.

Really good news and good work, Shemp. Gear down and coast on down that hill..

Shemp · Senior Member

Thank you Iris,the good part about my Doc is I can steer him pretty easily.He doesn't object to my requests.5 more weeks till EOT and it's getting easier.This is a good day.

Iris Dragonfly · Guru

sweet music! CONGRATULATIONS Shemp, very glad for you!!!

Weirdness with the dr. thank goodness he was wrong.

Onward!

Bb, Iris

Tig · Admin

Anytime my friend! Here you go I just asked it if you’re on your way to SVR. The answer is clear!

Shemp · Senior Member

Thanks Tig,5.It's really is a feeling I'm still trying to get a grip on.Tig ,do you think I can borrow that magic 8 ball?There's this powerball thing I've been working on.It might help.

Tig · Admin

Congrats, Shemp!! I knew it, my Magic 8 Ball told me so. I love that thing, it has never been wrong. Those are some mighty good numbers and of course that last little thing, “Undetected”, is the HCV Holy Grail! I’m glad you’re not on the road right now, you would’ve had to pull over or wreck, lol!

I’m thrilled to hear your great news, Brother. It’s all worth it!

5-1-18 · Guru

shemp :w00t. , isn't it the best feeling ever??????????????

and yes... laugh and cry. it is that good!

-- Edited by 5-1-18 on Friday 2nd of November 2018 07:20:33 AM

Shemp · Senior Member

I got Hep C via transfusion in 1979 after a car accident left me bleeding out of pretty much everywhere.40 years I've lived with the beast.But today the results are in.

ALT 12

AST 18

HCV RNA Quantitative NOT DETECTED

I don't know whether to laugh or cry.I do know in this case Shakespeare is wrong.Parting is not sweet sorrow.And I hope the door hit ya really hard on the way out.Thank you all for your help and support.You have become part of my new life.That won't change.

Shemp · Senior Member

Canuck,

The reason my Doc gave me for doing bloods at 6 weeks was he put me on treatment for 12 weeks instead of 8.Guess he figured it was half way.As far as being sleep deprived goes,I don't sleep well to begin with.Mavyret seems to make it worse.5 1/2 or 6 hours is about the best I can do.Once I begin to wake up it's over,there's no going back to sleep.I did use the Ativan once in a while for stressful situations,like driving in New York city.It helped .I see I just got an e-mail from my lab.I'll keep you posted.

Canuck · Guru

Aw, that's a bugger, when yer waitin', and ya think "yay the labs have arrived" and then .... nope! (worse yet, add in a negative false-alarm, and then it's ... just go back to waitin!). I always hated these waiting parts.

I thought it was a little funny that your doc was going to do your first on-treatment labs at week 6 (versus at week 4) but, that doesn't matter so much, weirder still was that he was only going to do a VL? at the 6 week mark, and he was not planning on doing LFT's at the same time? confuse , so, I think that was very good on your part to to expressly request that he also do the LFT's.

Your LFT's should have been back by now (I think), these VL's seem to be returning more and more quickly nowadays, but generally the LFT's have always seemed to arrive back the quickest, and usually surface within days and often arrive back before the VL's return.

Shouldn't be much longer though before you get some good news coming back to you.

So you said you were sleep-deprived .... cuzzzzz... why?, insomnia?, worried/waiting for results?, just wired for no good reason?, how did it work out BTW using the ativan - did you have to avail yourself upon it very many times to relax?? Did you take the ativan like a "sleeping pill", or, how did you end up best utilizing it.

I recall how I agonized over getting my lab results back in a timely fashion, even some of the very first assessment ones, not just the on-treatment or post-treatment ones. One time the lab completely missed taking a sample and I was going crazy waiting for the results to return (I actually had to figure that one out for them!), another time the staff (for the longest time) just did not know where or how to look to find the results that were there! (argh!), another time ... bloods drawn in one part of my Province (in one health jurisdiction) never routinely get forwarded out to a different doc, if that doc is in another part of the Province (in a different health jurisdiction) - a specific request has to be made or else the info will never travel! Another time, for the life of me I could NOT understand why my first VL and GT came back missing the GT, I had been fretting over what the load would be - dreamt about it, a nightmare that it was one million!, results came in ... 10 million, bugger, and no GT!, man ... I was frustrated, I kept going back to reception and asking and asking for "when does the GT part arrive?", "nope, nothing has come in today" she kept saying, "nope, not today either" she would report ... while i waited for the non-returning GT to return, I kept studying the big dismal-looking 10 million VL number on the page over and over, sigh!, funny though, when i noticed ... way, way far away from every other typed word on the page, separated away from the main body of info on the page, standing alone, all by itself, were 2 keystrokes .... no heading, no capitalization, no explanation - just this way-up-in-the-corner (in a vast sea of otherwise white mostly blank paper), a tiny "3a". Duh, and boo.

You can look forward to good news, right shortly, it makes the wait all the more rewarding.

Are you off work for a while now?? Can you stay home and rest up a bit, or, after you get your good news are you going to go out again? How are you physically feeling now? I am really hoping the last half of your mav is going to go faster and easier for you. smile C.

Shemp · Senior Member

Tig.

Ya we can go with that.And snowbirds are migrating back.I noticed a lot more volume at the lab.But,for that one fleeting moment I was whistling zip a dee doo da from my,well you get it.So far it's been the high point of my day.I'm guessing a couple more days.

Tig · Admin

Hey Shemp,

Funny, but not funny! I can feel your pain and aggravation. That seems a cruel way to start someone’s day. Is this the first time you used their portal? Could be it was the first message notifying you the portal access was now active and listed your previous results. Let’s go with that! I know your coming results will be far better than the pre treatment numbers. It shouldn’t take more than 3-5 days to get them back. Stand by....

Shemp · Senior Member

Picture this if you will.It's 5 am.A man sits in front of his laptop.The pale light illuminates his bloodshot,sleep deprived eyes.It's the only light in the house.He checks his e-mail.There is one from his lab saying the results of his bloodwork are in.What sort of magic is this, he wonders.He only had blood drawn 3 days ago.Could it be that the lab people were this efficient?He logs into his lab account.It says results from tests on 10/29.Oh happy day.He begins to read.ALT high AST high Fibroscore unchanged V/L unchanged.(deflating balloon sound here) Heeey... wait a minute.He scrolls back up to the top of the page and finds..... the date of the test is actually before TX.Way to go lab.They sent the same results from 2 months ago.Oh well,he did have that Christmas morning feel,if only for a moment.He'll keep you posted.Thanks for letting me vent.

Shemp · Senior Member

Thanks Tig,

GREAT to have ya back.

Hep C Discussion Forum

Legal Disclaimer: