so. as was predicted by C, my meds got here on time

of course i couldn't fall asleep waiting for the knock on the door. , and i was up in a flash when it did come. hubs was on the job too.

now the prediction is this is the last time we will have to do that routine

lamassu wrote:

---

Best wishes for early and sustained SVR!

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

---

 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.

Best wishes for early and sustained SVR!

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

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, 

enjoy your late nite snack C . 

yes, his and her cake.hahahahaha, but i always give him half of mine since i don't eat as much in order to keep fitting into my clothes

sleep well forum friend ,

5

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. 

another good day for me, i am thankful for this. i did a few fun projects around the house with lots of resting periods. and after a long hot shower i am down for the rest of the nite and watching tv.

here's hoping tomorrow brings the same good feeling.

i took my thyroid pill at 1pm and woke up with no upset stomach. i even had a very small piece of cake with dinner and no gut reactions

starting now on my second nite time quarts of water, did good all day too.

my 2nd harvoni arrives wed sometime from 8-8, that's the only thing i would change..... a shorter time frame to be delivered.

hubs is up early and on it , i did get him a chocolate cake and some muffins to be on the job for this. 

mine was white cake

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

Hey 5, 

Check out the Nutrition section for some good ideas on nausea and comfort foods that might work for you. There’s a section called the Green Smoothie Ranch that has some great ideas!

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

Oh 5, Hope your feeling better again. Its funny how the yucks come in waves and go way again. I do hope its just the bugs trying to escape and failing. These bombs are not letting them get away with it. Sounds like your feeling a bit like me. I don't feel great but Its not too bad, I can cope sorta thing.

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

Take it a bit slower and if you haven’t read our Nutrition and Hydration section, I recommend it highly. There is a recipe there that may help you with your stomach upset. We posted a recipe for homemade Ginger Ale that has helped many others in a similar predicament. I hope you get to feeling better!

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 

Observer wrote:

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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

---

 hi observer . i'm only on it 15 days so far and had one bad day on the 14th day. today was better but have to make some adjustments for the next 6 weeks...and i rest a lot so i try to get 20min in at least 3 times a week.

walking the dogs would be harder for me i think... and on riba, wow.

so good to hear you are clear...woohoo.

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

i'm happy to say those woozies passed leaving only a mild woozy that i can work under  . i even managed an easy lite arobics for 20min. between sitting around. 

so the plan is on to move my dose backwards, as usual i set my alarm and plan to jump up to my dose eagerly as i have the past 15 days.

i'm starting up an hour from what the pharm suggested on the first bump back so [at 10am instead of 9am ] . then i'll try the hour bump down from there. I should be able to manage that well enough.

i'll take my thyroid around 2 or 3pm it's at my bedside with water.

and i learned my lesson about only safe foods to be as gentle on my GI tract as possible.

i got this  , 5

-- Edited by 5-1-18 on Wednesday 16th of May 2018 04:04:59 AM

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.

we were told that we had a 2 hour window each day to take the pill , so around the same time means that today.

i agree that same time is the best way.

i will only change that if i need to back down slowly to a better time [so i'm not sick before or during work].

i posted on the "changing time" thread more details.

this is about the same amount of time lapse [5hrs since Hpill, and there is no big rush, just a gentle tiredness and wooziness. [this would def be better when it's time to go to sleep].

and yea..... gallstones . usually don't cause me problems even with a little off course in the diet. but maybe too much going on up in there right now for even small amounts of cheese and sweet potato chips.

it's funny cos 4 hrs after the rush episode  on 5.14.18 i was sooooooo hungry, i ate some safe foods and didn't feel bad after.

so, i'm feeling this weirdness 5 hours after my pill......but thank fully not as strong as yesterday.

wish i could know if this will be daily , but i just don't know right now.

i'm happy i did some homework and will be careful with all of this.

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.

Hi Tig,

I'm sitting here with my booklet and the leaflet that came with the medication and actually there is nothing printed to specify this. OOPS Sorry, was conf I had read it as well as the nurse telling me about this 16 hour window. Not taking two pills less than 8 hours apart.

All I can see in print is

When to take it

Take it at about the same time each day.

Taking it at the same time each day will have the best effect. It will also help you remember when to take it.

If you forget to take it

Do not miss a dose of Epclusa. If you forget to take Epclusa, take your missed dose right away unless it is almost time for your next dose. Do not take a double dose to make up for a forgotten dose. Continue with your regular dosing schedule.

which doesnt sound terribly helpful, but, it doesn't specify anywhere a need to take at exactly the same time each day!

I do not see a web address listed with the information just a physical address in Australia

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. 

I would be interested in reading that handout/booklet you received regarding the medication administration time changes allowed. The previous recommendation was an hour per day, but haven’t read any further information on the subject. The research is always changing. Does that booklet have a web address or can you post an example of the info included? I would like to read it. I haven’t been able to find a reference online. 

Very often a time change can make a positive difference in those administration effects. Taking it with food (or different food) and a beverage can be helpful, too.

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

SeeTheLight wrote:

---

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!

---

 thank you STL 

today i woke up feeling good, so that is good news.

i called the pharm. and they said i could go backwards in time if i get the same side effects today.

i took the bug bomb [i love that!!! hahahahahaha] at 1pm today so will see if it's predictable or maybe indeed it was just one bad day.

i took the bb and got moving doing a few chores and chugging water.  now i am relaxing with food and water.......... at least i'll be sitting down at home if it hits.

the pharm said , for me , i could go to 9am for the next 2 days, then jump down to 4 or 5 am from there on the next day. 

for now it's a great experiment, not knowing how it will affect me. things i'm considering- i get energy for the first few hrs so that was good for work and didn't want to sleep on it.

now with this thing that showed up yesterday i will decide if i need to juggle it around with the time frame formula.

for all i know it may have been the gall stones reacting to the small bit of cheese and sweet potato chips that i snacked on-too greasy with all that's going in the GI tract. hope so anyway

but i am thank ful to feel good when i woke up and now.

and thank ful that we can share the journey to wellness this spring . 5

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!

so, here it is almost 8 hrs after the episode/almost 12hrs after my dose. i feel less wozzy, and with a light headed feeling with a touch of headache. my eyes don't feel so goofy either.

i've had the heating pad on the back of my neck and stomach and that really helps along with food and water

this will be interesting to track. 

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

Canuck wrote:

---

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!

---

 i'm gald you got a chuckle out of those.... that's how I feel now :)

at the time it was more "WTF?" since I was so out of it and  i'm sure I numbed out quickly enough to move forward to the next party.

thankyou for enjoying my posts.

i'm so glad we are able to feel thankful.

thankful and joyful are my daily bread.   5

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!

tig and canuck,

thanks for the nice replies.

yes, it sure helped to see my mr. go thru his treatment, and the great work situation.

I am def a nite owl all my life

I've been on thyroid meds [.5] for about 5 years now and stable.

oh some other details that could help. I have been prescribed 2mg valium for sleep for the past 10yrs. I only take it if I have to work the next nite; and stop taking it on vacations. usually 1mg worked.

right now i'm finding that I need the 2mg just to get enough sleep to keep me feeling rested.

I am hoping that once the liver is cleared of the virus I can sleep without it. I think the virus just likes to party all nite while i'm trying to sleep.

I also get botox in the glabella area a few times a year. I was happy to hear that I could continue even on harvoni . however I did get a treatment a cpl weeks before treatment started.

when I was 29 I caught the 1a virus, but by the looks of things so did a lot of baby boomers. when I was 32 I discovered the enzymes were high and that I had a chronic liver disease.......it still took me 2 more years to stop drinking. and of course I stopped all the other nonsense at 29 after that trip to the hospital when I was so sick I thot I had died.

they put me in what must have been isolation in case I was contagious and i'll never forget that feeling of waking up there all alone- thot I was in the morgue !

I believe it was that experience that got my attention eventually-it was the birth of common sense in me. but when they let me go from the hospital they told me I would be ok in 3 months. So of course I figured I could still drink and snort. duh.

my mental health was going down the tubes by the time I was 34 and that old spark of "I want to live" took over; and from there I started taking care of myself. had to change friends and lifestyle by going into programs, but that taught me how to take care of myself.

and yes, the good attitude saves me daily. and I know how to soothe myself when the sad, angry, fearful and upset feelings visit me.

for me, drinking the water is just part of that discipline I learned; plus it helps that my Mr. has always been an avid water drinker and a good influence that way . [and a good harvoni example ].

yes, 6 weeks to go and so thankful.

thanks for the posts friends

-- Edited by 5-1-18 on Sunday 13th of May 2018 07:03:13 PM

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.

I‘m impressed! Your preparation for your journey seems quite solid. I wish everyone would take note of your plan and follow your lead. You’re going to do very well and it’s nice to join you on your ride on the Harvoni Train! Your mindset is great and your desire to win is obvious. Two weeks down, six to go! 

HYDRATION STATION: NEXT STOP

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...

Yay to day 12ish! Yep, yer officially "on treatment" over here! I like your avatar BTW (and the nice water/rock pic - where is that pond thing?). : ) C.

PS - you mentioned it on the other thread, but glad to hear you have some support at work - that is ALWAYS a helpful thing. Try not to push yourself too hard (if possible), slow and easy wins the race.

Now on day 11.5 :D  . I'm so happy to be here and have had fun posting so far. And now I have my thread on the ON Treatment subforum ....so far so good here, looking forward to enjoying every day along the way, the good and the not so good.