Tig wrote:

---

I shoulda mentioned, you have 24 hours to edit a post and then you have to ask one of the admin members (mods) to do it. That keeps things from changing willy nilly. 

---

 ahhhhh, please feel free to reduce the giant smiley a few posts below this one.... or take it out.. 

and me, i have to edit typo after typo 

I shoulda mentioned, you have 24 hours to edit a post and then you have to ask one of the admin members (mods) to do it. That keeps things from changing willy nilly. 

ok, i will stop trying to edit it out...... been trying every few hours to no avail. 

instead i think i keep reposting some other posts....the giant smilely is here to stay till someone finds the right bug bomb. 

that's it canuck! "see the promise"

dixlexia is your mother tongue 

Hey 5,

No problem! I reduced the size of the smiley and returned the flower to an icon. The problem with large HD photos, is they overtake the page and then the text in the posts often reduces in size. That makes it difficult to read on small devices, phones and iPads. You're free to post anything you like, just leave it as an icon that can be opened. Once you “insert” it, that’s when the problem occurs. I can’t change it in the forum software or I would. 

sorry for the big pictures. i'm trying to delete them but i still see them

hi lamassu,

so good to hear your SE's are less .yay, and that you will have labs sooner 

-- Edited by Tig on Sunday 20th of May 2018 09:18:51 AM

hat's it canuck! "see the promise"

dixlexia is your mother tongue 

hi lamassu,

so good to hear your SE's are less .yay, and that you will have labs sooner 

SeeTheLight wrote:

---

Hi 5,

Glad your new time is working wonders for you. I had a pretty good day yesterday also. No bad woozies. Drove to town 160km 100 mile (whatever makes sense where you are) bit of shopping, visiting, night out etc. Apart from some very  minor feeling zuck, not bad at all. Only 2 hours after my pill and just slight nauseous/dohey feeling so really alls good considering where we are heading

---

 this is such good news

i had my 2nd good nite at work in a row.

yes, we are doing well. 5

stl 

my feet and neck are my spots; with the wrists and elbows following if i over do it...

but yea, the feet! sounds like mine. i had a blood test that said rhumatoid arthritis so at least i don't suffer the stigma of the fibro.  but for all anyone can know that might just be a marker for the same thing that HCV causes.

i stand on my feet for work, but we get 20min breaks every 20-40 or rarely 60 minutes. that is also making work easier for me.

i like the idea of the aches and pains lessening too as the get cured and our liver gets some well deserved rest.

that's it canuck! "see the promise"

dixlexia is your mother tongue 

5-1-18 wrote:

---

Tig wrote:

---

Who is STP? STL could use some of that, lol! Vrrrrrooommmm!

---

 hahahahahaha, canuck is having a vision of how it will be good for us newbies .hahahahahahaha

---

heeheewheeeeeeeeeeee, these threads are not only informative but fun too! Tig - I will have you know 5.1.18 is correct in her surmizing, "STP" is dyslexic for STL, it's short for See The Promise? heehee. It's just said, spelled and thought differently in dyslexia - it's a brain thing. Sheesh Tig, do we haveta splain everything to ya, in English? I am bilingual, my Mother tongue is dyslexia 101.   C.

Hey, everybody sounds like they had a bit better of a time yesterday/today (despite anything/everything - pills, work, travel, sleep)! Yay for that.  C.

yup, Gilead makes good (and expensive) drugs!  C.

Lamassu, I think that's great getting the EOT labs a wee bit early! Bonus. Can't wait to hear.  C. 

Yes, missed this post Tig, (speaking to other posts and didn't realise this one had arrived, but very interesting indeed. Thank You. I have read similar things re the other damage this darn virus causes and am very curious to see if some of my weird things diminish after treatment. I certainly hope so. I have had these unexplained things going on for 20 or 30 years. My feet cause me so much anguish. the pain, tingling numbness etc can be excruciating. Did get a fibromialgia diagnosis for all the unexplained pains and neuropathy I suffer, but all they want to do is give me antidepressants and you get the "its all in your head" vibes, they don't get its not in my head, I hurt, so in time I stopped even mentioning it. Recently I had a day procedure and again re general health, the minute you mention osteoarthritis and its what do you take for that but mention fibromiagia, straight away get the old "are you on antidepressants for that" I have learnt over so many years to just ignore the pain, grit my teeth, don't be idle, walk through it and stop complaining it - it doesn't help.

I live in hope that when cured this may all improve, but after so many years suffering, I don't want to be overly hopeful.

Tig wrote:

---

Thats the truth! HCV manifests itself in a number of ways from the day we get it. If you havent seen this thread on the forum, take a look at all the ways it can cause harm.

Extra-Hepatic Manifestations

---

 i did read something you wrote about it, so i felt ok about adding what he found . but i will read that after work tonite

also,i read threads here and get lots of inspiration...there was one gal who worked thru it and that helped me to realize i could focus on what to do to make it easier to get to work

Hi lamassu,

How nice to see you fellow my Epclusa taker. I do agree with you that these sides are played down a bit too. It seems most of us have some problems with these Bombs ( I think of them as my bug bombs - there is a really big bug inside of me that will take some pretty heavy duty gear to kill it)

I keep waiting for the tiredness but it hasn't hit me yet, 3 1/2 hours sleep last night. I'm a terrible sleeper anyway but even worse since my bombing regimum started. Day 20 today.

I'm glad that like 5 you have been able to find a schedule that works for you. You must be so pleased to be heading for the finish line. Good luck with your results. I'm due for my first bloods in 8 days - 5 must be similar. I'm sure it will be a very nerve wracking time, waiting to hear the results. Look forward to hearing how your go.

Oh btw 5, I already have my second bottle. My pharmacy wanted to order it in early as they have to pay full cost for it and then get reimbursed by the PBS. They need to be paid for this one before they can get the next. I didnt realise the pharmacy pay full tote odds for everything and then get reimbursed. I had been told it was very expensive but OMG. The box arrived with my cost $6.40 Full cost $22,216.10 - that is without GST so about $25G. Unbelievable! Thats darn near $1,000 a diamond!!!!!! Clearly these pink diamonds are the very best of quality.

Hi 5,

Glad your new time is working wonders for you. I had a pretty good day yesterday also. No bad woozies. Drove to town 160km 100 mile (whatever makes sense where you are) bit of shopping, visiting, night out etc. Apart from some very  minor feeling zuck, not bad at all. Only 2 hours after my pill and just slight nauseous/dohey feeling so really alls good considering where we are heading

That’s the truth! HCV manifests itself in a number of ways from the day we get it. If you haven’t seen this thread on the forum, take a look at all the ways it can cause harm.

Extra-Hepatic Manifestations

oh, and hcv does have it's own symptoms that not everyone knows is part of the disease.

hubs discovered that symptoms of muckuloskelatal   pain can also be connected to hcv, so an even worse flare up might be possible..... 

i'm hoping all my muscle and bone symptoms i have had will diminish once the colony is gone and my liver is on the mend.

and gi problems and fatigue  are also a symptom of the hcv itself, so along with the strong pill, the departing virus and the sick liver it all makes sense to me.

every one at work is so happy for me getting the cure and that also gives me more positive vibes, i'm glad i trusted them with the info.

it's great inspiration to have so many ppl cheering me on, and here too.... it's a real blessing to feel this, one i didn't even realize would happen.

carry the water on. 5

lamassu wrote:

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Hi Canuck,

For some reason my liver doc was overly concerned about the second month fatigue and moved my EOT CBC and viral load test up two weeks so I will have a 10 week viral load result sometime next week. OK by me, I would like to know. Even though I emphasized the fatigue had passed I suspect he is just being cautious. I think Gilead tries to downplay how severe side effects can be. Prospective patients need to realize they may have to take time off from work during treatment as the DAA's can really disable you from my experience.

---

 i think the doc doesn't want to put negativity in our heads, maybe? My doc said it could be stomach upset, headache and fatigue.

My hubby wound up with muscle and bone pain due to him not taking it easy on his body [yard work]; but he is gaining strength now since he was eot : mid january, and still svr and liver panels looking good.

i think it would be better service for the doc to recommend looking at habits that could be affecting the sides and meds might need a time adjustment or other things eliminated. 

we smart ppl come to the forum to hash it out for ourselves , and call the pharmacy if unsure.

i saw what hubs went thru so was at least prepared but of course hopeful i would sail thru. 

i'm happy that i feel good enough most days so far and thank-ful i got right on the things i suspected as making things worse for me.

and still paying attention , cos mainly i don't want to go thru the hassle of going to the doctor for a note off from work.hahaha....my work knows all about it now so i did that for me [ in hopes of avoiding the doctor and notes ].

wonderful chat here everyone , thankyou all. 5

Tig wrote:

---

Who is STP? STL could use some of that, lol! Vrrrrrooommmm!

---

 hahahahahaha, canuck is having a vision of how it will be good for us newbies .hahahahahahaha

lamassu wrote:

---

Can't speak to Harvoni since I am on Epclusa (eleven days to EOT) but I noticed when I was having very heavy fatigue during the second month of treatment I always felt better, less fatigued for about four hours after taking the Epclusa so I chose to take it with dinner at 7 PM so I could catch up on email or watch TV in the evenings with some comfort. Now that the regimen is almost over I no longer have the fatigue and feel fine.

---

 this is great news.... almost at the end of the line . woohoo. and i'm happy to hear you too found what worked out for you. thank you for posting this, it's very encouraging to me. ...

by what ever name they call our cure i think there will be some kind of weirdness that goes along with it.

Hi Canuck,

For some reason my liver doc was overly concerned about the second month fatigue and moved my EOT CBC and viral load test up two weeks so I will have a 10 week viral load result sometime next week. OK by me, I would like to know. Even though I emphasized the fatigue had passed I suspect he is just being cautious. I think Gilead tries to downplay how severe side effects can be. Prospective patients need to realize they may have to take time off from work during treatment as the DAA's can really disable you from my experience.

Who is STP? STL could use some of that, lol! Vrrrrrooommmm!

hey lamassu,

Glad you piped up, been wondering how you were doing and feeling. So glad to hear you found a handle on that fatigue. Good for both our May 1 ladies to know (especially STP who is also on epclusa) that you felt less fatigue toward EOT. Wow, you're nearly done. Will be nice for STL (and for all of us) to see you cross that epclusa finish line soon!  C.

Can't speak to Harvoni since I am on Epclusa (eleven days to EOT) but I noticed when I was having very heavy fatigue during the second month of treatment I always felt better, less fatigued for about four hours after taking the Epclusa so I chose to take it with dinner at 7 PM so I could catch up on email or watch TV in the evenings with some comfort. Now that the regimen is almost over I no longer have the fatigue and feel fine.

That’s fantastic! It takes some figuring and adjusting to dial these things in. Your attention to detail worked, you’re to be commended for that. Some people aren’t as dedicated to finding out what works best for them and deal with issues throughout treatment. Not you! It’s a big help when others read the effort you put forth to find out what worked for you. It gives them the belief and strength to try. Good job!

HYDRATE! 

i'm soooooooooooooooooooooooo happy  to say that the new pill time worked out good for me at work. 

also, if i just drink water for a cpl hrs when i wake up it feels ok and can drink a quart or so.. ... then i have a filling dinner of agreeable foods.... then sip water for a few hrs... eat and sip.......then drink,drink,drink water....... the time and food seem to affect how it affects me >>>> at least right now.

so i hope this new plan works for quite awhile :)

i also put some ibuprophen gel on the back of my neck before work and that worked great too... i've had to do that often now and then thru the years.

right now my whole focus is on getting the harvoni in me and letting it do it's work...... so my life revolves around making sure i'm paying attention to everything.

but.......... i did buy some cake today to enjoy on my days off since my upset stomach only lasted a few hrs this evening. i am hopeful.......otherwise i'll freeze it til it's a go.

friday i called to  get my refill for next month and the pharm phone said it was disconnected/not in service :,  at first i thot "oh dear", but called my doc and actually got his nurse right away rather than phone tag. they tried to call and got the same message. .... she emailed the pharm , they called me around 6pm and i got my order in....being delivered wednesday coming up

well here's to more days like today. i even shopped for groceries and got gas for my car after work ...

now relaxing watching some tv after a long hot shower; excited to be taking my Hpill at 6am today. this is so wonderful.

5

STL - Like you I had no real demands for me to "perform" (work/whatever) while i was on treatment, and i found that to be a blessing - i was already having to rest and sleep SO much, even prior to treatment, it worked out!

To both our 5.1.18's - Even though you are both on SOF, your NS5A's are dif (LED for harvoni) and the (VEL) in epclusa - quite dif drugs, I think rather the similarities are (that you have both already touched on) are that you are both on very potent anti-virals, and are in midst of doing lethal blows to your HCV virus. A very good state, that may not feel good at the start, or periodocally/episodally, but which i am very hopeful you both will feel less of (this battle going on) in the very near future. i am hoping what you are feeling with level out and drop off soon.

5.1.18 - Was you husbands VL higher than 6 million? That might have had a bearing on why he got 12 weeks, wheres you got 8 weeks of therapy, https://www.hcvguidelines.org/treatment-naive/gt1a/no-cirrhosis - hard to say, without knowing more details. BTW - Just a thought - 16 oz of water all at once (if you have been doing that) might be too fast for your stomache, try stretching it in dif ways, 8 oz at once, then wait a while and then take the other 8 oz, or sip constantly. Experiment and see if sudden LARGE boluses of water into your stomache may be rocking the boat a bit, and modify (see if smaller portions, spread out, do the job of getting enough water into you just as well). 

Hey, good you added sig. line info! 

Hang in there ladies - i think you are both doing super-well.  C.

[I gotta say, having a functional liver is pretty awesome] 

observer, this is such an exciting thot , i'm so happy you got there.

yes, it is so much fun to be walking the journey with everyone here, and esp side by side with STL.

You both have wonderful attitudes, Im so pleased that you have each other to share your woozinesss with   And how exciting to think that soon youll be HCV FREE and super yay about that! 

I gotta say, having a functional liver is pretty awesome. 

A

i feel the same way about tx. i love my harvoni pill. and yea, that's just the virus stressing out instead of my liver stressing out.  the meds are moving in and evicting them-the tables have turned.

and yea, how cool is that .. we have the same start day

so, woozy on my friend , have a wonderful day

Yes, it is lovely to be able to talk about this. Particularly as we started at the same time.

Funny when I asked what strange feeling I nearly rabbited on about this weirdness I feel. I see it as being relatively minor so far ....... considering I could be Hep C free in 9 1/2 weeks. Hoping this is just a short lived stage and isn't just the beginning. I keep telling myself not to blame the drugs, it is just the virus departing.... Bring It On!  I CAN COPE!

Apart from the Hep C I consider myself to be pretty fit, and healthy. I walk a lot. Might visit the doc every year or two normally. Got the high BP and have a pill now. (so no more every year or two) Apart from that just a few vitamins. And now my big pink diamond of course.

SeeTheLight wrote:

---

Oohh INTERESTING, I have something sounds very like this! Makes me feel the Medication is responsible. I know we ere on different treatment, but I think one med is the same......Makes you wonder ehh.

With me it seems to be mainly of an afternoon. I take my tab at 7.30 AM - Its now 12.30 so five hours, and its starting. Seems a little earlier today. I keep thinking I am hungry, food will fix it but it doesn't. I feel very like what you describe. woozy, sorta out of it but feeling a bit sick, certainly not myself ....woozy/strange describes it well. Its not stopping me do anything but have to admit I do feel a bit weird. I'm just putting it down to these extremely strong bombs, and deem it to be quite minor - I can cope...lol.... but I don't work either so if I can't be bothered going out of an arvo, I don't have to. Sure it would be more of a concern if I had commitments.

---

 yes! exactly. all of this. 5hours after my dose; just started monday. and the food thing, yes! i get so hungry and think it will help.

i still get upset stomach and i take tums ... making sure it's 5 hours before or after the bb [4 hours is ok]. and sometimes the water upsets my stomach , but i keep drinking it. the heating pad helps my stomach too.

i have to do the same thing with my thyroid so there's a small window i can take a tums; so i plan my bigger meal around that time 

but... when i started taking the thyroid meds i felt strange too..... i am very sensitive to meds and can only take halfs or quarters of some otc meds. 

i'm only 5' tall and 129 and it's hard for me to believe i need the same does as a 6' 180 pound man [hubby].

i'm not gonna go against the grain on this-just that it's interesting. but maybe that's why i only need 8 weeks and he needed 12 .hmmmmm

yea, i'll just have to get used to speaking up if i can't make it thru my nite at work, and go see the doc if i need time off to make it easier on me...

it's nice that we can talk about it here on the forum

Sometimes it feels like I have something tight round my head - like a tight hat/ bandaging or something. My head can also be super sensitive to the touch. Very strange feeling.

Oohh INTERESTING, I have something sounds very like this! Makes me feel the Medication is responsible. I know we ere on different treatment, but I think one med is the same......Makes you wonder ehh.

With me it seems to be mainly of an afternoon. I take my tab at 7.30 AM - Its now 12.30 so five hours, and its starting. Seems a little earlier today. I keep thinking I am hungry, food will fix it but it doesn't. I feel very like what you describe. woozy, sorta out of it but feeling a bit sick, certainly not myself ....woozy/strange describes it well. Its not stopping me do anything but have to admit I do feel a bit weird. I'm just putting it down to these extremely strong bombs, and deem it to be quite minor - I can cope...lol.... but I don't work either so if I can't be bothered going out of an arvo, I don't have to. Sure it would be more of a concern if I had commitments.

STL , well...... i feel almost dizzy but not quite. almost headache but not quite. kinda light headed but not faint. = woozy/strange 

i'm icing my neck to make sure it's not from the arthritis inflamation.

ruled out the bp; but i've been lucky with that since i have been on a low salt diet for decades 

staying on safe foods.......... no party food . 

resting/water/managing my time change well and eager to get back on the exact same time every day , before bed so i don't have to wake up to take it and the sides mostly hit me while i sleep... taking 1-3mg valium on work nites.

Wow, BP looks great. What sort of strange feeling?

blood pressure today when the strange feeling came on = 120/76

If you’re interested in a phone app, I found one called Mango Health. It’s been on my phone for a couple of years to remind me to take the rest of my daily meds. It has a few extra items, fitness tracker, mood tracker and a few others I don’t use. Check it out, you might enjoy having more noise coming several times daily, lol! It works well though and keeps track of your intake.

Yeah Tig, I started doing that while I was being tested, after my nurse mentioned the importance of not forgetting once I start treatment and I joked that I had been recently put on BP meds and wasn't great at remembering, since I wasn't used to having to take something every day. ) I was only averaging 5/6 a week. She suggested the ph alarm so I started it and hadn't forgotten a BP tab since. That must be a month or more now, so a great idea! Would never had entered my mind.

STL, tig  :wave:

i just called the pharmacy again to dbl chk if what i'm doing is ok..yes

i will drop to 7am friday, then 6am saturday and will be able to sllllllllleeeeeeeeeeeeeeep AND work.

woke up feeling good even with not enough sleep. drank 16oz of water with my pill at 9 . already started on my wake up water . 

ttyl friends , 5

If there’s ever a concern of missing your established time, use the alarm on your phone. Set the time and then a follow up alert to remind yourselves. I can’t begin to tell you how many times that has saved someone here from forgetting to take their “Bug Bomb” on time! It’s a good confirmation, along with your pill container, that assures you never miss a dose!

Glad the time changing is going well, and you haven't had a recurrence of your bad day.

I have one of those pill boxes too. Came with my Epclusa pack. Made me laugh. Real old fogie now - pill box and all - but its very handy. I leave the lid up after taking also. My Nurse had me fill it the day I started the treatment, not from Sunday as the box runs, so my week starts Tuesday, I take last bomb Monday and refill. Seemed weird but there is no doubt when I have finished a week.

Stay Well!

going backwards in my dose time>>>>i decided to reduce by 2hours for 3 days in a row then stick with the 7am . 

pharm wanted me to reduce by 4hrs and that did seem too extreme for me, but i needed to be at 7am by friday  western us time... can go to 6 next week if i need to.

the pharm had me down to 5am by friday.....but this way i feel i'm still in compliance.

i have a weekly pill minder that i fill up. i put a piece of tape over the daily pill that way i could feel it in the dark to take my pill. i will still keep that there. i leave the daily lid up after i take it so i know right away i did.

ok, i can really go to sleep now that i've made my decision.

5

hi tig, i got some info into my signature. thnx for the link.

this one here i don't even begin to know what it means... Alpha 2-Macroglobulins, Qn=400/high. 

all the others i'm fairly sure of.

5

Hey Veteran!

You graduated, how about that! We’re very glad you’re here and have enjoyed the conversation. It’s good to know your BP was okay, mine has been controlled most of my adult life, so I understand importance of keeping an eye on it. I have to think your odd feelings of late are treatment related. These drugs are doing a double whammy on your metabolism. You’re doing the right thing by taking it slowly and realistically. Before you know it, you’ll be looking back on all of it. The time goes by fast, in hindsight anyway, lol! Truly though, it does go by quick, especially if you consider how fast our birthdays come and go nowadays!

Do me a favor, if you choose that is. Please set up your signature line with a few essential bits of information. You can see from others here, your genotype, treatment, your start date, viral load, liver enzymes pre and during Tx, etc., are helpful when reading your posts. It allows us to have a quick reference of your history and current situation. There is a link to more info in mine, if you need it. Of course it’s up to you. There’s a 300 character limit.

I hope you wake up feeling 100%! Cheers!

, oh....... one time in the first week of my tx  hubby tested my bp and it was normal even tho i was scared and feeling the first weirdness.

i didn't feel sick, just off some how.

he has a machine so we will chk that

eta: wow-i'm already a veteran member 

thnx canuck 

i put that on my to do list for tomorrow-chk blood pressure. i usually have normal.

my tests have mostly been in the normal range, but enzymes were + 10 above before treatment. so was my iron, a smidge over.. b12 was low.

i started b12 right away a few months ago but have cut it off for now since i can always start again if i feel ok about it.

labs will be after 4 weeks, so the end of the month, then again in 2 weeks for enzymes . dr appt is june 6. they do enzymes every 2 weeks and viral load every 4 weeks i think.

i get all my lab results on line, have been for many years . so i have studied the meaning of most of them; and try not to panic if it seems out of range.

so,, in 2 more weeks we'll all know what my stats are

i plan to move back an hour for my next pill and then stay there a few days.. then go down an hour for a few days, then stay there a few days.......till i have the time where i want it.

i do have arthritis and from what i've seen it can flare up under these meds . so continue with the heating pad.

my neck has been sore but it is often sore anyway... ice and heat.

i managed to do some chores today, no exercise tho. my mind is alert and i have a bit of stamina but am still resting and drinking water.

yea, no cake till i feel safe again . i do hate indigestion.

do a lot of ppl get high blood pressure with harvoni? i promise to do that when i wake up and will post it.

almost time for sleep over here. ttyl . 5