Hep C Discussion Forum

lamassu wrote:

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Best wishes for early and sustained SVR!

Canuck, somewhat off topic but I am wondering why some docs still rx Harvoni rather than Epclusa?

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 not canuck but i can tell you my ins. makes everyone start on harvoni... mavyret if we don't respond... i really wanted harvoni since i know so many ppl that did well on it and got cured.

i'm beginning to think they put us on 8 weeks to see if we do get svr and if not then off we go to the next one..so yea, i'm hoping for the early , sustained svr too.

Ya, others have found it "close" and a little unnerving to not have the drug in hand early, but, it always seemed to work out, I can't recall a single one of thoses cases where the drug did not get there in time.

thank you for this. it is soothing to read. .

i decided to put a note on the door to "knock hard please". hahahaha, 

Yay for cake (and better days) - good you are getting some breaks from the most bothersome effects. So, you have "his and her" cakes as well!- Harvoni isn't the only family plan you two are on. heehee. So, you must know a bakery that makes good stuff. I LOVE cake! Wish i had a gooey chocolate one with gobs of icing right now! Not a sweet in the house, 'cept ... oh ya those coconut bars, now you've done it! You are a bad influence on me, I'm up late and feeding my face. Well ... you did remind me though, I too should have a big drink of water before i hit beddie-byes. Interesting how the thryroid med (perhaps depending on the time of day you took it) had an effect on your stomache, had the thyroid med bothered your stomache before (in the past)?

Nice hubby will await your delivery for you. Ya, others have found it "close" and a little unnerving to not have the drug in hand early, but, it always seemed to work out, I can't recall a single one of thoses cases where the drug did not get there in time.

Yer perking right along, stay calm and methodical as you have been - you are doing everything right, including having a big helpful good attitude! C. 

something for me that may or may not make a difference; i am watching this now.

since i switched harvi to before bed 5:15am, i take  levo[thyroid med] either when wake up alarm goes off, or when i sorta wake up around 1pm or 2pm.   i do better when i take it then rather than later.... hmmmmm.

levo also can upset my stomach.... go figure , so it might add to the daily stomach grind unless i keep sleeping thru it too.

good thing i usually wake up [sorta] so i can take it then.

we are all going to have to write a book together some day

hi STL , yes, this was the best day ever since the double woozy day last monday. we were laughing and joking at work. we were all in such a good mood and i was able to flow with it. At one point i got over excited so had to take a step back, sit down and focus on breathing and relaxation , and soon i was able to feel ok again...then joined in with everyone again.

i even had cake again with no repercussions. yay. , of course now i have to put the cake away for a few days at least

and yes, it's so good to be able to cope with it when it comes up and to really enjoy the times of feeling actually good

i've been drinking water all day and nite 3.5-4qts........ i think when i work friday and saturday so hard at work i am just thrashed by sun. or mondy.......lucky for me i just felt bad not really sick like the week before. i didn't have to leave work last nite and i like that.

today i feel ok. i even decided to have cake last nite since i felt bad anyway. and i didn't feel worse after....i felt better.

my diet is pretty clean. i think it's just the nature of my job [ casino dealer], always having to be social with the customers and of course focusing on the money and cards.

i'm thank-ful it isn't harder than it is and that they are being good to me when i have a bad day.

almost 3 weeks without cake was hard   there are so many things i can't use do to other allergies..... ginger, spices, etc. , i'll try club soda next time

-- Edited by 5-1-18 on Monday 21st of May 2018 07:32:57 PM

today i was tired and upset stomach now and then. made it thru work and am happy i got out early. just relaxing now enjoying life 

Youre doing great! Glad the woozy are a bit better.

Im impressed that you are working and also doing aerobics...wowzers 

I was on different drugs (including evil riba) and it was all I could do to drag myself out for my dogs evening meander. 

A

also, (1) 500mg tums help [taken 4.50- 5hrs on either side of my dose].

since i do have some indigestion due to gallstones the docs and pharmacy know about the tums.

we were careful with the tums for hubby too during his Tx.

i do have the harvoni hotline #  so i can get a second opinion on what the pharm said.

the booklet doesn't give any info about time protocol except yes, take at same time everyday.. included is the info on if a dose is missed [ something i plan never to do , it would stress me out too much ].

i walk or do very lite arobics a few times a week.

and i work in a place with loud noises and blinking lights  ... a casino.

Thanks for the information. In the past, if anyone had a question regarding these new drugs, the recommendation was to call Gilead’s patient care hotline. These drugs were so new just a couple of years ago, even doctors and nurses prescribing or caring for patients on these new treatments weren’t clear on specifics. We gained knowledge by anecdotal evidence and over the years now by doing our own research and that of the professional articles. As soon as you think you know something, some brainiac comes along and improves it, lol! We like to stay on top of it for all who visit our forum.

Hey, Hi 5-1 (well, actually hi to both our 5-1's!) 

Sorry i didn't check in sooner to respond to your posts about how you were feeling today (yesterday!).

Hey, while I am posting Tig is here too! Now we are all here.

I say the same as Tig, about the old rule, one hour per day, it was a safe way to do it, not creating any great big swing (overlap or absences) to help maintain a theraputic dose coursing through your blood stream, but an hour per day to shift did take forever to put into effect! 

I kinda felt the pharmacist was generous in how much, how quickly to shift the administration hours, but the pharmacist should know. Shifting forward and delaying keeping the blood levels up is perhaps not as good a shifting backward and having your blood levels go up a bit earlier - what really matters is that (once you gently get yourself to the new time you think best) - try to stay there, consistancy is important, as is not being late with a dose, and of course, never forgetting any daily dose. 

All these posts about various hours of the day and night has MY head spinning! Me, being a night owl too - you'd think I'd get it, but sorry, I got lost in your time sheduale. What was the exact time of day you were taking your dose (before any change you have started on)? How did that "old time of day" dose relate to your arising hour, meal, and starting work hour?

Sorry you are having these symptoms and feelings, not nice, but you are doing all the right things. Eat gentle, I know you are drinking well. You have listened to your body, and rested. You have already done the best things.

2 weeks in (or a short period in), early in tretament, that seems to be when people who feel stuff may feel stuff. If it is spurred by the drugs, i hope it will pass, and you adjust, as people DO find happens. If it is something else, or multiple things (contributing) to help you feel the way you have been feeling, you have your good radar on and will moniter and suss it. Didn't know you had GB issues (stones?), perhaps a possibility, but it could be a lot of things!, it very well could be just be a passsing harvoni adjustment too. Keep doing what you are doing, treat yourself just like you were "delicate". Check your BP if you have a machine at home or at the drugstore, rule that out. 

You are already ruling out stuff. If you continue with these symptoms, then phone the doc (if they are obliging and cooperative in that way, to do that) as ask what they think in a chat.

I think and hope this is perhaps just a period and will pass. C. 

Glad to hear your feeling better. Here's hoping. Seems none of the knowledgeable folk are about today. Glad the pharmacy was able to help with the time changing. I did get the impression from my nurse and the Epclusa booklet that there seemed to be a 16 hour window with forgotten pill/changing time of meds, so makes sense to do it in stages. Pharmacists are certainly handy. As you say the cause may not have been your Harvoni. Good luck today

Sorry to hear your have not had a good day today. I hope it is a one of for you. Funny we both started May 1 but being on the other side of the world I have just taken bug bomb 16. All is going well with me and I had thought that getting through two weeks with only the most minimum of symptoms it was not going to be a problem. (figured it would have happened by now) Don't count my chickens eh. lol. Anyway, I hope with a good rest and lots of water you will be feeling your old self soon. Take care!

side effects at 2 weeks  . 5 hours after my pill I got a dizzy rush, rush of nausea and like a hot flash up the back of my neck...... and I just got to work .

my boss let me go right away, even tho the nausea had lessened a lot and the hot flash was gone.

so I drove home and here I sit, not as bad as early; but def not like yesterday [on 5.13 i still felt good all the time].

... in truth my nose feels stuffed, I have that little dizzy thing going but I can get up and walk around and play on the laptop and watch tv.

of course i'm hoping this is some random other thing, I def have sinus/allergy stuff but this woozy thing and almost headache is new. i'm thankful it didn't blow up into full blown nausea and headache.

my eyes feel like a sinus thing; but the wozzy i'm not so sure about.

ok, back to the water and tv .

i'm taking my pill an hour earlier on Tuesday to check the time thing; and hope I wake up feeling good again. I may have to adjust my time that works better for my job- lucky only 6 more weeks to go and I can get the flex medical leave if i need it.

it was worse for about 5 hrs. , now it's uncomfortable and of course annoying

I've been resting this whole time [oh, am gonna cut out the bit of Claritin and b12 for now]

-- Edited by 5-1-18 on Tuesday 15th of May 2018 09:49:52 PM

heehee, oh my ... actually ... I LOL'd (sorry), it was NOT funny, but jeeze ... it just sounded funny ! ... "Thot you were dead and waking up in the morgue". (I'm sure it was not at ALL a funny time or thing to experience!) 

I like your way with words and situs ... "the virus partying all night while I'm trying to sleep". heehee

I too, was and felt, "so thankful" to get on my meds.  C.  Onward, you're killin' it!

Ya me too Tig, I am impressed. 

You have taken care with your approach to treatment, taking into account good planning in an organized and methodical fashion. Sheesh wish I was more like that all the time! You have got a lot of good things going on for you, and have done a  lot of wise things that will help you get through the next 6 weeks! Nice too there was experience around you that you can draw from. Attitude too, helps so much. Much harder to approach something that you have not done before, with chaos or fear in company.

Ah, I thought you were going to tell me that waterfall was in your back yard, cause then I and everyone would want one!

Shift work eh? I worked evenings (and nights) a lot in my former lifetimes. Are you a "natural" night owl? My working through nights cemented my night owlishness, I am still a natural night owl.  Borne habits die hard i guess. I am very glad to hear how accommodating they will be at your work and how you do not have to do too many hours.

I didn't pay attention before, if you mentioned it, that you were on thyroid med. How long and how much, is that something new, or have you been stable with it for a long time on meds?

Speaking of feeling surprized about the lack of sides? ... we had one fellow here (dif drugs than you), but he got his via a trial, he started his trial just before i was to about to start my trial (some of the same drugs) so of course I was acutely attuned to what he was going to say/experience. His trial had multiple arms, at one point he was almost convinced they had somehow put him in a "placebo" arm, by mistake, as he could discern nothing! (as far as sides). He went on to be very well cured with the very much the "real" drugs he had indeed been getting all along. Everyone is dif, even on the same drugs. I am suspecting and expecting this is going to go very well for you indeed.  C.

hi canuck

first, I googled for water fountain and that was so beautiful I used that pic.

yes, yay 12 days!

I am so blessed to have a work place that understands and a hubby who went thru it. plus other ppl at work have been thru it.

During my vacation we took care of anything we could think of to make sure the rest of my treatment didn't require a lot of me. So now it's just work 25-30hrs of work [4 days going home early when possible or necessary. They expect me to let them know when I need to go home and rest].

Then I'm not doing much on my days off , a few easy chores and fun easy projects. Always with plenty of tv time with my feet up and my big water next to me.

At home we knew what to plan for since he went thru it for 12 weeks. but he wasn't tough enough to rest and take it easy , and I could see first hand what would happen if I don't. He loves to garden and nothing could stop him-it was the way he got thru it even tho his arms and hands cramped up awful for a few hours at a time in the middle of the nite.... we used heating pads and microwave pads. Plus he had to take prescribed pain pills.

I do not like nor do I do well on pain meds, so I am being realllllly careful. I have only taken 1/4 of an over the counter ibuprophen 2 times so far. and that is for sinus/allergy symptoms that I get even with out harvoni. I have always taken tiny doses of meds when I needed them.

becos of that I was sooooooooooooooooooooooooooo surprised that so far I have no side effects that can be pointed at the Harvoni. Just my normal things pre-harvoni, and no better or worse.

I even shopped and cooked and froze my favorite lite foods that are perfect to keep my stomach going well ; I eat well . no high fat, calories ,sugar or salt.... been doing that for years  to spare my stomach and liver.

of course I do splurge at least once a week, but that would proby not be considered a big splurge by any stretch..

I get cake once a week for sure

I only drink water and diluted low-acid coffee. no soda, milk or hot chocolate. ..... really , just water and coffee like I drink.

I take my thyroid pill at 2am, and harvoni at 2pm cos i'm a late swing shift worker and need to fall asleep around 5:30am.

I have noticed that sleep hasn't felt as good. but I give myself plenty of time in the bed to catch what ever zzzzzz's are available  [5:30am - 3:30 pm, waking up at 2 for my pill]. I am eager to take my pill when that alarm goes off

I take a few grains of Claritin a cpl hrs after the Harvoni if i'm desperate . I can manage with 1 or 2 times a week. and when I say grains, I mean it. I crush it up, put a small bit on my finger tip and lick it off.

again, things always hit me strong and I have learned the hard way to take a miniscule amount. it helps just enough that i'm not miserable .

ok, that is my blog for my completion of day 12 and now going to sleep to have day 13.

that was so cute how it was day 12 for me already in your country. i'm guessing Canada? i'm in the western usa.

ok, almost bed time for me over here; it was fun adding to my blog today about some details.

oh and yea, that avatar came to me the week I started.... I knew I had to make that pic my avatar here...