Author Topic: Viekira Pak + RIBA (24wks) treatment started 24/3 (Read 91623 times)

Philadelphia · « **on:** March 30, 2015, 04:37:49 pm »

So I thought I'd keep a treatment journal of sorts, for myself mainly, but also anyone else who might be starting this journey.

Side note, I am in Australia, so some things will be different. My accent, for example. Our cute marsupials. Our health care system. But other than that - the same!

Week 1 done and dusted. 23 weeks left. A mere drop in the ocean.

How do I feel? Interesting question. I think I fixate on side effects. "Fixate? You?" I hear you say.

So let me tell you the side effects I may have experienced. Perhaps an increase in bilirubin. Perhaps a decrease in haemoglobin. I am occasionally light headed. But that could well be another medication I am on. It has made me light headed in the past. I think sometimes I am slightly short of breath, but then I look back and realise I've just walked up a hill.

I get blood tests at two weeks to look for many things, these included.

So far, I am not nauseated. I am not headachey unless I don't drink enough water. I am not fatigued.

So let me tell you what I've learned one week into treatment, and those who have already read my other thread have seen this, so skip to the end.

Last time I tried treatment with the interferon/riba combo, I knew it was going to be rough. I knew there was a high drop out rate. I knew the treatment felt worse than the disease while you were living through it. And so I was determined not to let the treatment beat me.

I spent the time I was on treatment fighting the treatment, not the virus.

This time, I've taken onboard that the virus is the enemy, not the drugs used to treat it. The drugs and I are working together to hopefully eradicate an unwelcome visitor.

So if I need to rest, I'll rest. If I need to take a day off, I will. If I need to ask for help, I'll do it.

We're in this together. Ombitasvir, dasabuvir, ritonavir, paritaprevir, ribavirin and me.

Go us.

lporterrn · « **Reply #1 on:** March 30, 2015, 06:13:00 pm »

Fantastic that you are sharing this info. I didn't notice the accent, and your user name "Philadelphia" threw me off. Thanks for posting!

KimInTheForest · « **Reply #2 on:** March 30, 2015, 06:28:13 pm »

Great attitude Philadelphia! Good on ya, and good luck!

Kim

Philadelphia · « **Reply #3 on:** March 31, 2015, 03:24:04 am »

Tues 31 - first day back at work since starting treatment last week. I survived. I survived and so did everyone around me. It's a win-win situation for sure!

I started the day with my usual 3km walk, then a frantically busy day at work where I really didn't stop moving until 4:00pm. I was tired at lunch and had to eat on the run, but I made a point of sitting and chatting with some colleagues after work and that was a good way to end the day.

Now I'm home and I really should go hang out a load of washing and pick up a few wheelbarrow loads full of manure, but only one of those things will get done. I'm sitting in the lounge for a little while. Then I'll think about dinner.

Yesterday I was in Sydney at a meeting and took the opportunity to duck over to the hospital managing my treatment during lunch. I met with the CNC who is wonderful and she shared the same information about viral load numbers sometimes still being detectable around 8 weeks but patients achieving SVR that I've read here. She said the new DAAs are making everyone revisit what have been the "knowns" and "expecteds" in HCV treatment.

To wildly paraphrase Shakespeare:
"O brave new world, that has such treatments in't"

Philadelphia · « **Reply #4 on:** April 01, 2015, 05:02:11 pm »

Last night I felt slammed. Tired, tired, tired. I dealt with a multitude of issues at work. Every time I went to sit down someone needed to speak to me on the phone, or I had to respond to an email, or an enquiry, or someone knocking on the door. I need to manage that better. As the boss it's hard not to be available, because that's what makes you a good one. But for the next few months, they'll have to manage without me being as on-game. Prioritise, triage.

I can tell by looking in the mirror that my bilirubin levels are increasing. I am getting yellowing in the whites of my eyes. I'm not bright buttercup yet, but you can notice it. Everything I've read says if it hits, it tends to do so in the first week or so and dissipate by the fourth week. Here's hoping, or I'm going to spend my time looking like an extra for the Twilight werewolf scenes.

I can't gauge my haemoglobin. I don't think it's dropping rapidly but I just can't get a reading on it. I still walk every morning, I still make roughly the same time and distance, I still enjoy it and don't struggle, but I am tired by the afternoon.

Still minimal nausea, headaches only happen if I'm not hydrated and I am not suffering any skin conditions. One important thing I learned last night is that if you don't want to be up three times in the night to pee, don't drink much water after 9pm. Seriously.

I'd like to hope that this is as bad as it gets, but one thing my illness has taught me is to never underestimate its sneaky impact. So every day is a new day, every day is what it is.

Philadelphia · « **Reply #5 on:** April 02, 2015, 05:35:02 pm »

I was tired yesterday too. End of the week, getting ready for the Easter break, busy at work ... But yesterday I let everyone know I was tired and they took up the slack that I needed to drop.

I was a bit itchy/scratchy last night too, but as that has only happened once or twice, I wonder if it's not somehow linked to the Thai massage I have once a week. Massage yesterday, itchy last night - it's possible. I took an OTC antihistamine and things were fine. I also slept REALLY well.

This morning I feel quite human.

I have a break now, which should allow me some down time and an opportunity to recharge my batteries. Ten days down!

Philadelphia · « **Reply #6 on:** April 02, 2015, 08:40:23 pm »

Officially on two weeks break. Netflix viewing binge starts in 10 ... 9 ... 8 ... 7 ... 6 ...
#becauseholidays #becauseican #becauseidontneedareason!

Philadelphia · « **Reply #7 on:** April 04, 2015, 12:05:24 am »

Normally I'd go for a walk each morning, but it's been raining so I haven't. It cleared somewhat this afternoon so I went out and picked up two wheelbarrow-loads of manure. Yep, I am tired. That made it crystal clear I could have stayed out longer and pushed myself, but why? It'll still be there tomorrow.

Philadelphia · « **Reply #8 on:** April 04, 2015, 06:35:08 pm »

Another three loads of manure late yesterday.

Today: A 2km walk with the dog. Swept the back paved area of the house. Put on a load of washing. Made the bed.its not even 9am yet. I'm ready for some heavy duty tv watching.

Philadelphia · « **Reply #9 on:** April 05, 2015, 05:09:58 pm »

Today marks two weeks done. I had my mega pill extravaganza this morning. Three more tonight. I'm just heading out the door for a walk once I've fed the animals. I feel remarkably normal today. Well, as normal as I ever feel.

Philadelphia · « **Reply #10 on:** April 06, 2015, 03:23:13 am »

Tomorrow is my 2 week blood test. To say I am anxious is a massive understatement. I don't know what to expect. With my amount of liver damage, all I'm hoping for is to see some changes, preferably downward numbers, but I'm sharply aware that it can be slow for people and not everyone gets that big drop.

Fingers crossed for a reasonable outcome.

sapphire101 · « **Reply #11 on:** April 06, 2015, 11:21:31 pm »

Hey Philly,
Forgive me- we yanks tend to quickly move to nick names!

Your two week blood test is a rite of passage and it is normal to be anxious. SO many possibilities and the most likely is that your numbers have dropped and are moving toward normal. Please double check with the technician that all the appropriate labs have been drawn for you. At my two week lab draw the liver enzymes were left off and these are important with Viekira Pak.

Of course it is the viral load that we all focus on. As per my signature my pretreatment VL was 1.7 million and after only two weeks of viekira was down to 16 as in less than twenty. This stuff works and the way your spend your day with all the physical activity it is clear you are in good physical condition and have a strong circulation. Even if you do alternate with occasional TV binges.

Philadelphia · « **Reply #12 on:** April 07, 2015, 01:24:47 am »

Thanks Sapphire. I don't have as much energy as I normally do, but I usually spend my days being really really really busy. I'm just going to have to cut back.

Have been emailing my health care folk today. The only things my dr and nurse are concerned about so far are my very attractive yellow eyes. While increased bilirubin levels are not uncommon, jaundice only presents in about 1% of cases. Of course, the results have not come back in yet. Never borrow trouble, it'll find you quick enough if it's looking for you.

Philadelphia · « **Reply #13 on:** April 07, 2015, 05:22:21 pm »

Day 2 Week 3 and I woke up this morning feeling rested, human and alive. I wanted breakfast, it wasn't just something I choked down so I could swallow the pills. I'm about to go for my morning walk and am looking forward to it.

I'm just hoping I don't have enough energy to do the housework afterwards

Philadelphia · « **Reply #14 on:** April 07, 2015, 09:46:40 pm »

Bilirubin 152 (!!!!!!!!! told you I had yellow eyes)
Renal function results bear watching. Nothing dramatic though.
That's the bad news.

Now the good news.
LFTs
ALT dropped from 137 to 42
AST dropped from 185 to 46

Viral load takes about a week so no news there.

I'm heading to Sydney this weekend anyway, so will head in for an abdo U/S and a chat with the dr and nurse. They've reduced my ribivarin to 2 tabs/day to see if that helps.

Philadelphia · « **Reply #15 on:** April 08, 2015, 06:10:24 am »

I just thought I'd add that today I went to town, had an appointment, did some grocery shopping, came home, cooked dinner, cleaned up and I do not feel tired. I feel pretty okay. It's the first time I've cooked dinner from scratch since starting treatment. Avocado and cucumber salad, quinoa and kale patties. Really very yummy!

Philadelphia · « **Reply #16 on:** April 09, 2015, 09:58:49 pm »

Because of my horrendously high bilirubin levels I've come down to my treating hospital. Flew down at 6:30am. While everything else looks good with my 2 week tests:
ALT 42
AST 46 (both dropped from 137 and 185 respectively)
Hg 123 (dropped from 143)
Platelets 104 (an increase from 74)

I know my INR has come down as has my GGT

They are watching these two:
Bilirubiin 152 (raised from 40)
Albumin 36 (dropped from 39)

They want to be sure the drugs aren't damaging my liver any more than it can tolerate. At the moment I'm compensated Child-Pugh A and they don't want it to be thrown into a tizz.

So I had a scan today to look for reasons for the high bilirubin. I haven't seen a copy of the report yet, but I did hear them say they couldn't see a blockage anywhere.

So they've taken bucket loads more blood to see if things are going up,down or staying the same.

I come back on Monday to see the hepatologist. Here's hoping for stability if improvement can't be achieved!

Philadelphia · « **Reply #17 on:** April 10, 2015, 01:03:31 am »

Most blood test results back. The reduction in Riba must be working, or things are settling down on their own. Who knows? I guess they'll keep fiddling with the dose.

Bilirubin 103 a drop from 152 yay for bilirubin
Albumin 39 an increase from 36 yay for albumin. We're back to pre treatment levels.
ALT 41 still dropping was 137 at start of treatment, 42 on Tuesday at my 2 week test.
AST forgot to ask! Daft.
Platelets 127 an increase from 104 on Tuesday and 74 at the start of treatment
GGT 61 a drop from 100 at start of treatment

My haemoglobin has dropped to 114 from 123 on Tuesday but they'll watch it carefully too.

Feeling much better! Phew!

Philadelphia · « **Reply #18 on:** April 10, 2015, 04:12:00 pm »

For the first time in three weeks I am hungry. Scratch that, I'm starving. If I don't get food soon, things could turn ugly.

Philadelphia · « **Reply #19 on:** April 11, 2015, 06:11:22 pm »

Best night's sleep in a while (helped w half phenergan - I couldn't have borne another night like Friday).

I was whacked yesterday, but I think I'd had a really busy two day, along with little sleep.

Boy, not drinking enough water really points out the problems that come with dehydration. I didn't have enough on Saturday and I ached all over. Today I feel much better.

Philadelphia · « **Reply #20 on:** April 13, 2015, 12:06:37 am »

I saw the hepatologist today as well as the CNC. Couldn't access any more blood test results as the entire system was down hospital-wide. Much frustration for everyone.

Both felt the bilirubin skyrocketing and haemoglobin dropping were linked to the riba and nothing more sinister. The drop in albumin levels was what threw them when added into the mix. Still staying on the reduced riba dose until things stabilise a bit.

I picked up my next month's worth of meds and left with a much lighter heart.grateful to my caring and on the ball team who have worked together for me.

Philadelphia · « **Reply #21 on:** April 13, 2015, 06:07:09 pm »

Week 4 - onwards and upwards.

I have now passed the point where I had to discontinue treatment last time. A psychological hurdle but a hurdle nonetheless.

It's nice to be home. Even though it does need a good clean. I'm going to take the dog for a walk and see how my Hg handles the hill.

Philadelphia · « **Reply #22 on:** April 14, 2015, 07:38:49 pm »

HCV RNA 45. Week 2
Pretty happy with that

sapphire101 · « **Reply #23 on:** April 14, 2015, 11:10:30 pm »

You are on your way to undetected! How cool is that?
My doc gave me the option of checking viral count at two weeks and of course I jumped on it. Me "Yes please, I want to see that the meds are working". My Doc says "trust me- the meds are working".
Me "I trust you and I still want to see the numbers!"

Something about seeing it in print validates the process.

Philadelphia · « **Reply #24 on:** April 15, 2015, 05:23:46 pm »

I feel ridiculously normal. My gastrointestinal tract feels normal. My energy levels feel like The New Normal (that's like normal factoring in a lowered expectation of what I can do). I've gained back the weight I lost. I needed to, I was too thin as a result of nausea). I can think (I think).

This puts me in a good position to go back to work part time next week.

Red Hen · « **Reply #25 on:** April 15, 2015, 06:30:23 pm »

Glad you are doing so well, Philadelphia. Hey, I got good news today. 12 weeks post treatment and HCV undetected! Makes those side effects seem worthwhile. Hang in there!

sapphire101 · « **Reply #26 on:** April 15, 2015, 11:20:05 pm »

Congratulations Red Hen! For sure this makes all side effects minimized to hear our first Club V SVR 12 victory. Thank you for leading the way and for your mentorship.

Any word from the rest of the others?
Aveinc, ekarena, lllory86, and at one point hepctreat now was considering viekira along with Randoarcher. Maybe more I have lost track...
If any of you are still out there please join in and give us an update.

Philadelphia · « **Reply #27 on:** April 16, 2015, 02:31:07 am »

Great news Red Hen. That's what we are aiming for!

hepctreatnow · « **Reply #28 on:** April 16, 2015, 09:35:45 pm »

On Viekira Pak + Ribavirin for 12 weeks. Started April 7 and had 1 week blood work done on Tuesday. We're already seeing positive signs after one week!

At start of treatment my ALT was 128 and now its 59
AST is now 46 from 95 at start of treatment
Hemoglobin is now 111 and Platelet at 143 from 90 at start of treatment.

My 1 week viral load results will be available next Monday. Will be doing blood test again next Tuesday 2 weeks post treatment.

As for side effects, there's really not much to talk about with the exception of occasional headaches and tiredness all is good.

Cheers, Michael

Philadelphia · « **Reply #29 on:** April 16, 2015, 09:40:32 pm »

Wonderful news Michael! Great to see the Viekirians doing so well!

hepctreatnow · « **Reply #30 on:** April 16, 2015, 09:50:34 pm »

Yes Philadelphia, its great to see we are doing great so far and am happy about your new lease on energy level you are feeling. I'm hoping for that in the near future. Michael

sapphire101 · « **Reply #31 on:** April 16, 2015, 10:39:49 pm »

Thank you for the update Hepctreatnow.
Once someone gives me a piece of their story I am hooked and want to hear it to the end. I care a lot about all my forum friends and have a special bond with fellow Viekirins.

Good news: I received my 8 week VL today and it remains undetectable. I do have slight anemia kicking in (explains why I am feeling tired) and that is probably the ribavirin. Since I am on my last month I am going to tough it out. No changes please this stuff is working!

Red Hen · « **Reply #32 on:** April 17, 2015, 12:08:33 pm »

I'm happy that everyone is getting better!

Philadelphia · « **Reply #33 on:** April 18, 2015, 04:08:41 am »

Reasons to be cheerful, part 3.

Today I
* Went to town to my favourite cafe, had a good coffee and some nice sourdough toast. As well, I learnt that the very cool and hip (and lovely) owner/barista secretly loves speedway racing and can talk with great depth about horsepower and torque and engines and stuff. I love knowing about people's secret passions!

* Went to the record store, despite the fact that no one in my town knows about Record Store Day, and bought the new Sufjan Stevens album Carrie and Lowell. It is BEAUTIFUL. I'm going to see him play @ Vivid in May with my daughter. I didn't see his last shows over here so I am looking forward to seeing him play again after all this time

* WALKED UP A FLIGHT OF STAIRS!

* Bought tix to the Travelling Film Festival, also in May

* Went to the local Art Show and bought myself a really lovely piece called All That Remains

* Was out nearly all day without feeling like I was going to keel over from tiredness

* Came home with beef shanks for the dogs

* Have dinner in the oven - roast lamb.

It's been a pretty good day.

Philadelphia · « **Reply #34 on:** April 18, 2015, 05:53:31 am »

... And before anyone thinks it's all sunshine, lollipops and rainbows here, I burnt my thumb on the roasting dish and dropped the entire roast on the kitchen floor. That's a new one for me, never done that before. I blame the drugs

And just so you know we are total heathens, we ate it. Five second rule, and I'd mopped the floors earlier.

It was delicious.

Red Hen · « **Reply #35 on:** April 19, 2015, 12:25:44 am »

Philadelphia, that sounds like a good day. Glad you did not throw out the roast!

skycatcher · « **Reply #36 on:** April 19, 2015, 05:32:43 pm »

Hi Philadelphia! I also believe in the 5 second rule and I hear your accent! I had computer line issues knocked me off for a few days but everything is good.

I was originally being prescribed the Vpak but then insurance wanted to go with Harvoni. The most important thing is everyone's numbers are doing great! Glad you are doing so well.

~ Skycatcher

Philadelphia · « **Reply #37 on:** April 20, 2015, 02:36:37 am »

Today marks two Big Things.
1. I am back at work after the holidays. It's a pretty easy day today and I've given myself a week of admin before I start my proper job. I've arranged to do 4 days/week and can cut it back again if I need to.

2. I had my 4 week bloods drawn. There was some confusion over which test to use - the path request form said Taq Man, the lab wanted to know if it was quantitative or qualitative, they said Taq Man did both. Well, there you go. I said the most sensitive one.

My RBV level test from Friday 10th came back as 2.80 (I had already reduced it to 2 tabs/day three days before this test was done as a result of my wildly increased bilirubin and plummeting haemoglobin) so for the moment we are waiting to see what other tests show before a decision is made on increasing the dosage I'm on. The nurse said a good therapeutic level was 2.0 so I appear to be absorbing it a little too well.

At present we are waiting for the liver function tests and chemistry. I already have my haemoglobin results - steady as she goes at 116. Gone up by 2. But that's it. Nonetheless it puts me in normal range. Yahoo for that.

Onwards.

Philadelphia · « **Reply #38 on:** April 20, 2015, 10:51:16 pm »

Still waiting for the nurse to send me through a copy (and it's been a heck of a morning here with bad weather and sick cats and another blood test required ... )

But I can report that ALT and AST have dropped again -
ALT 137 - 42 - 30
AST 185 - 46 - 36
Bilirubin dropped again from 153 - 103 - 76
Hg holding at 116,
Creatinine dropped from 95 to 90
e-GFR from 53 to 62
RBC still falling 3.8 to 3.5 to 3.41

But of course I can't have a blood test without something weird and this time it's my glucose level. 14. What the? It's always been borderline high but 14? I did eat some cake and sweet slice and lollies at morning tea (we were at a meeting) and that was abt 1/2 hr before they took the blood, so that might account for some of it but still ... so now we've got that to look into.

But mostly okay! Still some weirdnesses in there but now the RBV levels are sorting themselves out, things are settling.

Philadelphia · « **Reply #39 on:** April 24, 2015, 12:07:48 am »

Crappiest of crappy days yesterday. Tired, emotional, trying to do too much and ending up doing nothing ... just lost it and was a sobbing mess.

Basically that's about it. But if you want the entire, unexpurgated, woe-is-me story, have a look here.
http://blogs.hepmag.com/gracecampbell/2015/04/hepatitis_c_nobody_l.html

I'm feeling much better today.

Red Hen · « **Reply #40 on:** April 25, 2015, 10:21:56 am »

Philadelphia, I have not read your full account of your "melt down" but I can assure you we all have them from time to time! Even sometimes without the added input of HCV drugs.

I'm glad you are feeling better at the moment. Distract yourself with something shiny!

hepctreatnow · « **Reply #41 on:** April 29, 2015, 12:41:47 pm »

Hi,

Here's an abbreviated update. I'm currently starting week 4 today and blood work at end of week 4 next Tuesday. On Vpak + RIB for 12 weeks, Genotype 4 Compensated Cirrhosis. Increased RIB from 800mg to 1200 mg at week 3. At the start of week 3 treatment was a piece of cake but after increasing RIB to 1200 it quickly turned into a shit taco. I had constant headaches and they would not go away. The good news is they subsided finally yesterday. The good news so far from treatment is its working. See below...

April 07 (Day 1) April 14 April 21

ALT: 128 ALT: 59 ALT:64
AST: 95 AST: 46 AST:62

Viral loads:

11-Feb-15 - 106,921 IU/ml
16-Mar-15 - 940,000 IU/ml - screening
07-Apr-15 - 276,000 IU/ml - before 1st dose
07-Apr-15 - 181,000 IU/ml - 2 hours post dose
14-Apr-15 - 145 IU/ml - week 1
21-Apr-15 - <25 IU/ml - week 2 (25 is the lowest quantity they are able to count)

Philadelphia · « **Reply #42 on:** April 29, 2015, 05:24:29 pm »

Nice work with those numbers!

hepctreatnow · « **Reply #43 on:** April 30, 2015, 11:35:07 pm »

V Club members... its time to provide an update!

How are you doing with treatment and are you experiencing an increase in quality of life etc...

Philadelphia · « **Reply #44 on:** May 01, 2015, 08:38:29 am »

Up and down for me. My ALT and AST dropped from week 2 to week 4 so they are now in normal range. My VL did not cooperate at week 4 though. Dropped from 45 to 40. A few thoughts: was done at a different hospital, results reported differently. I panicked but take heart in my good LFTs and a drop albeit small. My team tell me to stop panicking.

I'm doing whatever I can to make it work, can't do any more. So now it's up to the drugs.

Another VL at 8 weeks. I'm on a 24 week program so that's good.

I've been unknowingly under a lot of stress at work. I finished two huge compliance reports - our annual report for 2014 and our three year plan 2015-2017. Felt immediately better. Am now only working 3 days/week, will see how that goes. Time off to recharge is vital.

Red Hen · « **Reply #45 on:** May 02, 2015, 10:05:00 pm »

Hi to Club V people! I wanted to check in. 12 weeks post treatment undetectable and will be going in for 24 week post blood work in July. I've gotta tell you, I feel great! Plenty of energy, concentration is better and although I'm not always deliriously happy I am not having panic attacks or depression nearly as much as I did before or during treatment. Side effects from the ribavirin lasted longer than I had expected but seem to be gone now. Food tastes better, too. I hope this lasts. Getting rid of the HCV really does make a difference. Hope this will be a super summer for all of us.

Lynn K · « **Reply #46 on:** May 02, 2015, 10:08:18 pm »

Hi Red Hen

Did you become anemic from the riba? If you did how long did it take as far as you know for your HGB to get back in normal range?

Thanks

Red Hen · « **Reply #47 on:** May 03, 2015, 08:23:26 pm »

Hi, Lynn K. I did not become anemic from the ribavirin. But. I already had a condition called "pernicious anemia" which means I lack a stomach enzyme to process oral B-12. So, I was already being treated with a monthly B-12 injection for that. Probably that is why I did not have anemia from ribavirin.

Philadelphia · « **Reply #48 on:** May 05, 2015, 06:05:42 am »

Because of my wild and crazy bilirubin, they want me to do two weekly bloods for a while.

More decent results for week 6
ALT 22
AST 33
Bilirubin 50 ,a nice drop from 152 at Week 2
Hg 117
Everything else either holding normal or trending in right direction. Creat good. GGT getting there, albumin good, rcc perked up a tiny amount.

Pretty pleased as all things are finally trending where they should. Except my glucose but let's leave that for a later post, shall we?

hepctreatnow · « **Reply #49 on:** May 11, 2015, 06:18:18 pm »

Hi,

Here's week 4's update.
Regiment: Viekira Pak + 1200 mg Ribavirin / Day for 12 weeks
Profile: Genotype 4 Compensated Cirrhosis

April 07 (Day 1) April 14 April 21 May 05

ALT: 128 ALT: 59 ALT:64 ALT: 39
AST: 95 AST: 46 AST:62 AST: 35

Viral loads:

11-Feb-15 - 106,921 IU/ml
16-Mar-15 - 940,000 IU/ml - screening
07-Apr-15 - 276,000 IU/ml - before 1st dose
07-Apr-15 - 181,000 IU/ml - 2 hours post dose
14-Apr-15 - 145 IU/ml - week 1
21-Apr-15 - <25 IU/ml - week 2 (25 is the lowest quantity they are able to count)
05-May-15 - UNDETECTED

At week 4, my Hemoglobin and Platelets are taking a beating though - HGB: 108, Plts: 74. Side effects have been very minimal the last few weeks. Some tiredness in the afternoon.

Cheers.

Philadelphia · « **Reply #50 on:** May 18, 2015, 04:56:41 pm »

Week 7 done, Week 8 starting. Little Old Lady (tm) pill box locked and loaded. Feel okay. Been tired at night, but also been working harder.

hepctreatnow · « **Reply #51 on:** May 19, 2015, 03:31:09 pm »

Hello there Philadelphia,

Just got blood work end of week 6 this morning should have result within few days.
I'm feeling somewhat more tired also the last week or so. Just refilled my grandpa pill box (was forgetting if I took certain vitamins). I'm getting a B12 shot on weekly basis and it seems to help and gives me good jolt for a few days.

I'm thinking of going back to work (Information security and risk management) next month pending Hemoglobin gets in line. In the meantime I'm recording lots of music since I've had some time to myself these days.

Cheers. Michael

Philadelphia · « **Reply #52 on:** May 20, 2015, 02:15:36 am »

You all know what weird test results I get ... well let me celebrate - I have a normal test result!

Admittedly it was a completely irrelevant organ, being a pap test, but you have to take your normals where you can find them, nowadays.

YAY FOR MY NORMAL PAP TEST!!

Philadelphia · « **Reply #53 on:** May 24, 2015, 06:03:51 pm »

Although I'll blog about it when I get home, I'm in Sydney for the weekend to see my daughter and to see my treatment folk at the hospital.

Last time I was down here I felt like crap. Side Effect Hell had hit (sinking Hg, fatigue, nausea, bilirubin through the roof). I struggled to walk up a flight of stairs. I struggled to walk anywhere much.

This time I feel okay. I saw two movies, wandered Sydney at night w my daughter watching the lights at Vivid and went to a Sufjan Stevens gig at the Opera House. I've eaten a wide array of foods, from Nepalese to Malaysian to Chinese and many things in between.

I feel okay! I'm tired but I did walk 12km yesterday.

hepctreatnow · « **Reply #54 on:** May 24, 2015, 10:12:55 pm »

Great Philadelphia!

I'm starting to feel bursts of energy more and more also.

Philadelphia · « **Reply #55 on:** May 25, 2015, 05:27:54 am »

You can Check out the liver markers in my sig below - week 8 numbers.

Other important notes: bilirubin continues to fall - now 37 and lower than when I started treatment. Hg has fallen to 112 yet I feel much better thsn when it was 113. Creat and e-GFR a little out of normal but I was a bit dehydrated so that might be it.

Basically doing okay. Waiting for VL results.

sapphire101 · « **Reply #56 on:** May 25, 2015, 10:49:35 pm »

Good one Philly just saw your normal PAP smear. LOL!!
My end of treatment coincided with my yearly annuals for many body parts and I am almost done getting through the gauntlet.
You are right to celebrate all the normals.
It would really stink to get through all of our HCV treatments to have to take on some other new chronic disease craziness.
Let's all stay healthy in every way and that includes not neglecting our check ups.

hepctreatnow · « **Reply #57 on:** May 26, 2015, 12:00:18 am »

Here's week 6's update.
Regiment: Viekira Pak + 1200 mg Ribavirin / Day for 12 weeks
Profile: Genotype 4 Compensated Cirrhosis

April 07 (Day 1) April 14 April 21 May 05 May 19

ALT: 128 ALT: 59 ALT:64 ALT: 39 ALT: 36
AST: 95 AST: 46 AST:62 AST: 35 AST: 36

Viral loads:

11-Feb-15 - 106,921 IU/ml
16-Mar-15 - 940,000 IU/ml - screening
07-Apr-15 - 276,000 IU/ml - before 1st dose
07-Apr-15 - 181,000 IU/ml - 2 hours post dose
14-Apr-15 - 145 IU/ml - week 1
21-Apr-15 - <25 IU/ml - week 2 (25 is the lowest quantity they are able to count)
05-May-15 - UNDETECTED
16-May-15 - UNDETECTED

At week 6, my Hemoglobin went back up to normal range - HGB: 130 -, Plts: 75. Side effects have been very minimal the last few weeks.

Cheers.

Philadelphia · « **Reply #58 on:** June 01, 2015, 11:28:32 pm »

Finally hit the holy grail - undetected. some time between week 4 and week 8. So very happy.

sapphire101 · « **Reply #59 on:** June 02, 2015, 04:08:18 pm »

After many years of battle, your liver is at peace. Enjoy my friend!

KimInTheForest · « **Reply #60 on:** June 02, 2015, 08:45:39 pm »

Congrats Philadelphia!

kim

Philadelphia · « **Reply #61 on:** June 13, 2015, 08:06:33 am »

I've kind of lost track of where I am exactly, but my best guess is I have week 12 coming up next week. I have an appointment with my specialist in Sydney - this will be the first time I have seen him since I started treatment. All my communication has been with the nurse specialist, who is in constant contact with him.

Here's hoping for more normal, more boring, more life-goes-on mundanity!

hepctreatnow · « **Reply #62 on:** June 18, 2015, 02:46:14 pm »

Update: Feeling quite well with another 12 days to go to reach EOT. Rollerblading everyday at least 5 to 10 miles. I'm currently devising a post treatment Amino Acid regiment with my doc. I made it! Contemplating going back to work in the next month or so (the world needs me more than ever - Information Security and Risk Management).

April 07 (Day 1) April 14 April 21 May 05 May 19 June 02

ALT: 128 ALT: 59 ALT:64 ALT: 39 ALT: 36 ALT: 33
AST: 95 AST: 46 AST:62 AST: 35 AST: 36 AST: 38

Viral loads:

11-Feb-15 - 106,921 IU/ml
16-Mar-15 - 940,000 IU/ml - screening
07-Apr-15 - 276,000 IU/ml - before 1st dose
07-Apr-15 - 181,000 IU/ml - 2 hours post dose
14-Apr-15 - 145 IU/ml - week 1
21-Apr-15 - <25 IU/ml - week 2 (25 is the lowest quantity they are able to count)
05-May-15 - UNDETECTED
16-May-15 - UNDETECTED
02-June-15 - UNDETECTED

Barto425 · « **Reply #63 on:** June 19, 2015, 12:47:56 am »

So happy for you. I'm going to start that soon. Same as you...24 weeks. Wanted Harvoni but they wouldn't approve it. So scared of the side effects. How is it for you? Thanks.

Barto425 · « **Reply #64 on:** June 19, 2015, 07:24:44 am »

I wondered if anyone could answer this question about Ribavirin. Is it the Ribavirin that's causes the red blood problems or the Viekira? Also, does the Ribavirin has any affection platelet counts. I'm starting the 24 week, Viekira/Ribavirin soon. My platelets are already low @48-50 on a good day. Just curious. Thanks for any help or advice. I had hoped for the 24 week-Harvoni without the Ribavirin which was an option but the veterans administration health system doesn't cover that. Thanks again. Barbara in sunny Florida, USA.

Philadelphia · « **Reply #65 on:** June 19, 2015, 07:39:05 am »

the riba causes most of the red blood cell issues, but neither Viekira or riba should have an effect on your platelet count. You may find it goes up a little, mine did.

Barto425 · « **Reply #66 on:** June 19, 2015, 07:49:34 am »

Oh good! Thanks.....

JoJoAnn · « **Reply #67 on:** June 19, 2015, 10:06:04 am »

Hi Barto! I am on day five of 12 week Viekira + RIBA. No noticeable side effects so far! Don't be scared to take the pills, it will be worth it in the end

Barto425 · « **Reply #68 on:** June 20, 2015, 12:00:55 am »

Thanks. I'm looking forward to beating this disease....believe me. I guess I am a bit anxious but that's just me. I'll calm down once I get started. I appreciate all the comments and updates from this site. Good health everyone.

KimInTheForest · « **Reply #69 on:** June 20, 2015, 12:33:50 am »

Quote from: Barto425 on June 20, 2015, 12:00:55 am

Thanks. I'm looking forward to beating this disease....believe me. I guess I am a bit anxious but that's just me. I'll calm down once I get started. I appreciate all the comments and updates from this site. Good health everyone.

I think you will do fine, Barto!

Try not to overthink or anticipate or stress about possible side effects, or that may create problems you would not otherwise have. I am on Week 7 of 12 of Harvoni+Ribavirin, so the Ribavirin part is the same as yours. I have had no real problems and no discomfort. Yes, my hemoglobin is now low due to the Ribavirin. It seems to do all the "dropping" it is going to do by Week 4 and then stabilizes.. So I get out of breath climbing a hill or a flight of stairs. And my resting heart rate is high right now because my blood is under-oxygenated, so my heart needs to do more pumping to move more blood. I couldn't run an endurance race right now, that's for sure. But so long as I take it easy and don't push myself, and I sit down or take a nap when I need to, I am fine.

My biggest and most persistent side effect so far has been a dry cough. That is a Ribavirin side effect. I am able to keep it under control with Ricola lozenges (which don't have any artificial toxic crap in them). But it would be hard for me to do any public speaking right now. Fortunately I don't have to for the duration of my treatment. At other times, I do.

Focus on the fact that you will, in all likelihood, be cured by these drugs. Count your blessings to be on this treatment, which so many others need and are not getting. That will help keep your attitude bright and your immune system strong. Stress is one of the biggest weakeners of immune function.

All the best to you, and good luck!

kim

Barto425 · « **Reply #70 on:** June 20, 2015, 08:04:48 am »

Thanks for the encouragement! I'll be posting more as soon as I get started. Looking forward to be disease free. I guess this is truly a miracle.....

Philadelphia · « **Reply #71 on:** June 20, 2015, 08:12:25 am »

Please do it. And keep your eyes on the long term prize. it's possible you'll have bad days, but look to the future. Did you imagine a time when there was a greater than 90% chance we'd kick the virus? I didn't. That makes the bad days worth it.

pappy · « **Reply #72 on:** June 28, 2015, 11:24:51 pm »

My two week in showed undetected but it did the same with harvoni . If asked i would say the first month is harder side affects wise with harvoni . This could be due to the Viekira Pak + RIBA having less baddies to deal with at the start . However over this last month i have found the the riba effects are as my doctor says it taking the wind from sails . Over all I feel better being medicated than with hep-c but i have 5 long months to go . $:-\$ $:-\$

Philadelphia · « **Reply #73 on:** July 02, 2015, 11:02:27 pm »

12 week update:

ALT 21
AST 23
GGT 28
Albumin normal-ish - 39

Creat/e-GFR normal

of course the weird results are my bilirubin and haemoglobin again - 52 and 109 respectively.
^
Ribavirin, I'm looking at YOU.

Good numbers overall and I'm happy

hepctreatnow · « **Reply #74 on:** July 03, 2015, 12:42:43 am »

Hi Philadelphia,

I'm done since last Tuesday. Liver enzymes and GGT in normal ranges and Platelet still low but improving. I feel great and am on a regiment of amino acids. I got a Fibroscan done today and put it this way, my cirrotic liver has improved by 50% and reversing back rapidly. Will post numbers shortly... Glad to hear you're doing great. M

Philadelphia · « **Reply #75 on:** July 03, 2015, 12:47:35 am »

Hepctreatnow - you mean Done? As in FINISHED? Wow. Congratulations!

hepctreatnow · « **Reply #76 on:** July 03, 2015, 01:34:03 am »

Yes done! 12 weeks VPak and 1200mg a day of Ribavirin. Cleaning this stuff out of my body as fast as I can with MSM and Aminos. Also taking Niagen (google you will be impressed). I'm giving myself 1 month then I'll go back to work. Brain still foggy and minor issues going to bed but the majority of these sides is the Ribavirin. Not sure why they put you on same meds than I with similar liver health for 24 weeks. Reading all the research paper, it seems that 12 weeks with Rib is way sufficient. Nonetheless, Ribavirin is permanently on its way out of all treatment anyway. Cheers, M

Philadelphia · « **Reply #77 on:** July 05, 2015, 03:39:31 am »

I can't wait to see how you are feeling as you continue to feel better! Please keep us updated M

Barto425 · « **Reply #78 on:** July 05, 2015, 07:34:51 am »

I agree....but I'm not a doctor.....why did they put you, Philadelphia, on for 24 weeks with Ribavirin? Very curious. 12 weeks is usually what is given?

Barto425 · « **Reply #79 on:** July 05, 2015, 07:38:05 am »

Oops....my bad! You're on Viekira........not awake here. Sorry...it's this Florida weather. Lol

Philadelphia · « **Reply #80 on:** July 17, 2015, 08:10:02 pm »

Nothing to report which, as far as I'm concerned, is a good thing! Bilirubin up and down. Hb mostly down. Sporadic weirdnesses with some results but liver tests tracking well and all in normal ranges.

Almost finished week 16. A little over 7 weeks left to go. Time's flying!

Barto425 · « **Reply #81 on:** July 17, 2015, 08:25:10 pm »

No news is good new Philadelphia. I haven't even received my meds yet from the VA. But it's seems I am approved for Harvoni/Ribavirin for 12 weeks. Good luck to everyone.

Philadelphia · « **Reply #82 on:** July 25, 2015, 06:23:56 pm »

I'm at the end of Week 17 and about to launch into The last 6 weeks. There were periods around weeks 2-4 where I doubted if I'd get this far, especially when I was "enjoying" rapidly surging bilirubin levels, with changes in my creat and e-GFR, but here I am.

I'm so excited to see some more Viekirians on the board- for a while there it was pretty lonely, hugely outnumbered as we were by the Harvonians. The fantastic thing is both these combos work for almost everyone. With the addition of Riba (something I hear they are trying to phase out of treatment?) Viekira has a few little quirks, so it's nice to be able to compare apples with apples.

I've been pretty quiet on this thread for a few reasons:
1. I really have nothing to report, and
2. I've done something pretty challenging in the real world.

For those who don't read my blog, I have done an interview on ABC radio here in Australia for World Hepatitis Day. It was pre-recorded last week and is being trimmed down from the hour and a half (!!!) of audio they had to something manageable. I hope we get a good 5-10 minutes on air.

I used my real name and told my hepatitis story from diagnosis till now- the good, the bad and the ugly. Lots of bad and ugly, unfortunately. Declining health, failed treatments, fear and sadness.

I also spoke about how the future could be better for those with HCV if the government would stop prevaricating and agree to fund the new direct acting antivirals.

Why has it been a big deal to use my name? I live in a regional city with a population of 50,000. I'm pretty well known and it should take exactly 5 nanoseconds for word to spread. It's not like I've kept my diagnosis a secret, but I've chosen who I share with. Well, I suppose it can be said I've chosen to share with everyone now.

So I've been thinking a lot about what it means to live with this virus, to keep it quiet and the ramifications that has for the stigma and discrimination it allows. I don't suggest everyone comes out as publicly. But I'm 56 and ive reached a point where I feel comfortable enough I my own skin to wear a few weeks of whispering, back stabbing and bitching. I have the support of my workplace, my boss, my family and my friends.

I've decided it's time to shine a light into the darkness of secrecy and have my say in honour of the people that can't. The ones who are too sick, too worried or who have passed away.

That's what I've been doing.

Barto425 · « **Reply #83 on:** July 25, 2015, 07:21:41 pm »

I admire your courage! I told my husband the stigma of this disease is overwhelming at times. I told my boss about it years ago and was promptly encouraged to find another job.....which I didn't do. I haven't been on here at all lately because I just started my meds yesterday. Instead of Viekira I was given Harvoni/Ribavirin for 12 weeks. I wish everyone the best of success in their journey to better health.

KimInTheForest · « **Reply #84 on:** July 25, 2015, 07:30:59 pm »

I have huge respect for you Philadelphia, and the recent interview you gave telling your story. I read your blog post about it. Good for you!

kim

w_ink · « **Reply #85 on:** July 27, 2015, 02:43:19 am »

Kudos, Philapelphia!

Philadelphia · « **Reply #86 on:** July 28, 2015, 09:38:45 am »

It's done, aired and published on line. I've linked to it in my blog.

What I found really gratifying was that overwhelmingly the "likes" and comments on the ABC radio FaceBook page came from past and present students, parents and school community members. That was so incredibly touching.

The only down side? This - I mention it in the intro:

"The only thing I'm not happy with? The photo. It's awful. So you must promise not to judge me on the fact I look tired, 157 years old and clearly an extra from Night of the Living Dead."

Even my mother asked me what I was thinking using that bloody awful pic.

http://blogs.hepmag.com/gracecampbell

w_ink · « **Reply #87 on:** July 28, 2015, 04:16:01 pm »

Wow, Philadelphia, what a beautiful interview. Your story is profound, you are so eloquent, and your call to action at the end is spot on. Thank you! Oh, and your smile is lovely.

Philadelphia · « **Reply #88 on:** July 29, 2015, 09:14:40 am »

For those who may be interested, after the ABC interviewed me, they also interviewed my specialist. You just have to listen to his interview to hear how compassionate and non-judgemental he is. He has a very strong sense of social justice and is driven by a deeply ethical set of beliefs. I'm so lucky I found him.

https://soundcloud.com/abcnsw/hopes-to-eliminate-the-hepatitis-c-virus-by-2027?in=abcnsw/sets/living-with-hep-c-jane-kibbles

Philadelphia · « **Reply #89 on:** August 02, 2015, 09:28:49 pm »

Week 19 done. Boom!

Nothing whatsoever to report.

Spring is coming.

The end is in sight.

KimInTheForest · « **Reply #90 on:** August 02, 2015, 09:45:20 pm »

Way to go Philadelphia!! Just 5 more weeks to go. You are in the home stretch!

kim

Phoenix · « **Reply #91 on:** August 04, 2015, 11:15:50 pm »

Philadelphia,

Listened to your radio interviews. How brave and courageous you are to take some major action in changing people's attitude towards this disease. By giving Hep C a human voice and shining light on the issue, you help break through the ignorance people have about this condition. You're a hero! Liked your doctor's interview also.

So much of your conversation reminded me of what I have experienced in dealing with this hopeless (now hopeful) situation. Thanks for expressing the feelings that are bottled up within me. You give me a goal to strive towards.

Thanks and Many Blessings to you!

ms.nomoreC · « **Reply #92 on:** August 06, 2015, 11:29:01 am »

Hi Philadelphia,

Until I listened to your interview, I had forgotten how devastating the news of my infection was. I was so tired back then I was sure I was on my way out. I had been hoping for gall bladder disease! Your interview reminded me of the journey and has made my most recent lab results that much more sweet. (Undetectable and zero VL at wk 6.)

Thank you for speaking up. I have been more open about my HCV infection since I began treatment, and have been contemplating how I might be useful as another voice and face of HEPC. Still weighing how that would affect my role in the classroom.

I think my last day of treatment is in 4.5 weeks on 9/8. we're on a similar timeline.

Wishing you a SVR, and many normal HCV free normal days in your garden,
ms.nomoreC

Philadelphia · « **Reply #93 on:** August 06, 2015, 04:36:28 pm »

Thanks guys. The decision to do such a thing was 27 years in the making, so it's not like I was all brave and courageous from the get go.

I love my dr too Phoenix. One of the most non judgemental people I have ever met.

Philadelphia · « **Reply #94 on:** August 07, 2015, 07:34:49 am »

Warning: an actual hepatitis C post.
Called in to St Vincents for early week 20 blood tests (which should have been done next week but I'm here so we thought 'why not?'.

Liver markers:
ALT continues its nice decline - it's now 17. Normal values are between 0-30.
AST holding well at 23 - normal values as above.
GGT dropped again to 25 - normal being 0-35

All others pretty much as they have been all along. Haemoglobin dropped well into anaemic range - 104 - but not really impacting on anything.

Good results.

hepctreatnow · « **Reply #95 on:** August 07, 2015, 03:59:42 pm »

Looking great! Thumbs up!

ms.nomoreC · « **Reply #96 on:** August 07, 2015, 09:01:47 pm »

Normal is ever so sweet! Almost there!

Philadelphia · « **Reply #97 on:** August 07, 2015, 09:09:59 pm »

I think I have 5 weeks left till my last pill.

sapphire101 · « **Reply #98 on:** August 07, 2015, 11:38:56 pm »

Will five weeks take you to spring in Australia?
How appropriate for you new lease on life!

red raccoon · « **Reply #99 on:** August 15, 2015, 05:55:24 pm »

Hi Phillidephia,
Well here's something you dontvhave in Australia raccoons (of any color) most unfortunate for you they are amazing animals. So I started Viekura and ribs on 8-6-15 I have 23 weeks to go. I have compensated cirrhosis and now they found colorectal cancer too. I've had hep c for 39 years of course gt1a vl9000000 cancer has not been staged yet im curious it they are going to continue with treatment while undergoing chemo. And by the way I stopped working my business last year because my health was so bad (I service and pump septic) so I went to Welfare about 4 months ago and they are paying for everything. Yes I am waking a lot at night get a funny feeling in roof of mouth and tongue, sinus headache weird muscles in arms ache and I take benadryl to sleep

Philadelphia · « **Reply #100 on:** August 15, 2015, 06:28:45 pm »

You're right red raccoon! I've never even seen one in the wild. I have seen squirrels - I love their busyness! And when I was in Jasper AB there were elk wandering through the town! (Now I know why visitors to Aust get excited when they see a kangaroo for the first time)

All the very best for treatment. I have about a month to go.

Philadelphia · « **Reply #101 on:** August 18, 2015, 07:54:18 am »

Three weeks left.

http://blogs.hepmag.com/gracecampbell/2015/08/hepatitis_c_an_epiph.html

red raccoon · « **Reply #102 on:** August 18, 2015, 11:31:46 am »

Yaaaaa!! So happy for you Aussy/ Philadelphia. You must be very excited to put this behind you! Check out chere Charles on YouTube and watch the movie coon doing laundry. There is another one named mov002 or something like that. That was my pet cooney. It will make you laugh. The second movie is really funny. Amazing intelligent creatures. Good luck. I wish you the best!!!

Philadelphia · « **Reply #103 on:** August 19, 2015, 07:40:50 am »

They certainly are inquisitive little guys aren't they!

Philadelphia · « **Reply #104 on:** August 20, 2015, 05:12:13 pm »

Saw my GP yesterday (blogged about it, of course). I suggested I might be ready to take on one more day's work a week. She said why do it so close to the end of treatment and run the risk of getting really tired and run down.

It's a fair point - I AM tired every morning and my hb is crap. As I have holidays coming up in a month I'm going to maintain the status quo till then. By the end of the hols treatment will be over, I will have had some time off and I'll have a better idea of how I'm travelling.

red raccoon · « **Reply #105 on:** August 20, 2015, 05:37:01 pm »

I am going to shut down my business after 10 years. I have been exhausted at times where I lay in bed for a week sleeping and the rest of the time I am tired. I am add/adhd my mind goes 100 miles a minute my body use to also. Very frustrating to not have any energy to move the body or enough to slow down the mouth. I have to stop working completely before I can file for disability so I've averaged lately one day a week so I move to nothing. I figure I will go finish becoming a certified addiction specialist. Big big big business here in sunny california. Enjoy the holidays. I'm guessing you don't have thanksgiving do you celebrate x-mas and new years there?

Philadelphia · « **Reply #106 on:** August 21, 2015, 09:12:43 am »

No thanksgiving (turkeys are not a thing here), no Halloween but yes to Christmas and Easter if you come from a Christian tradition. Not everyone in Aust is Christian, but I must say many other religions and many agnostics/atheists have subsumed Xmas for celebratory reasons if not religious ones.

red raccoon · « **Reply #107 on:** August 21, 2015, 10:33:33 am »

Xmas is score day in my little family of 3 and Easter is Pagan ritual day I call it as we still hide stuff in the yard and search and destroy (our teeth) I was raised christian but as I aged so did common sense and logic so we just turned traditional celebrations into our own crazy fun. Talking to you and my vets assistant has really Opened up a new interest in Australia for me. We have a lot of problems and people and police here in California it sucks. My sisters and dad live in Oregon on the coast a much nicer place then this valley. Hep c question have you noticed joint pain? My hip is burning and started having sharp pain in foot. Gotta go cats fighting

Philadelphia · « **Reply #108 on:** August 24, 2015, 07:37:13 am »

I don't get any joint pain at all. Apart from old age creaks and groans.

In other news - TWO WEEKS LEFT
http://blogs.hepmag.com/gracecampbell/2015/08/hepatitis_c_two_week.html

red raccoon · « **Reply #109 on:** August 24, 2015, 10:56:30 am »

21 1/2 weeks left. You go Philadelphia! My alt was 407 the other day 18. I can't wait to do a vl to see how much that has dropped.

dearprudence · « **Reply #110 on:** August 25, 2015, 06:11:08 am »

Quote from: Philadelphia on August 24, 2015, 07:37:13 am

I don't get any joint pain at all. Apart from old age creaks and groans.

In other news - TWO WEEKS LEFT
http://blogs.hepmag.com/gracecampbell/2015/08/hepatitis_c_two_week.html

Two weeks! Can't believe it's so close for you now! Good luck Philadelphia! Woo hoo!
Prrudence

Philadelphia · « **Reply #111 on:** August 27, 2015, 09:07:31 am »

There was a great article in today's Sydney Morning Herald about my friend Steve and his struggle with HCV. He is campaigning for better access to new DAAs. And as we don't have any mainstream access to them, ANYTHING would be better than what we have.

It formed the basis of today's blog entry.

http://blogs.hepmag.com/gracecampbell/2015/08/hepatitis_c_how_many.html

Philadelphia · « **Reply #112 on:** August 28, 2015, 06:44:07 pm »

We all know my maths is dodgy, but I THINK I'm down to single digits. Almost the end. The first two weeks and the last two weeks move like molasses in winter.

red raccoon · « **Reply #113 on:** August 28, 2015, 07:44:45 pm »

Yippy skippy

Cal · « **Reply #114 on:** August 28, 2015, 08:00:49 pm »

Hi Philadelphia,
Job well done! Good on you. Cal

Philadelphia · « **Reply #115 on:** August 31, 2015, 10:45:13 pm »

162 days done, 6 days left.

KimInTheForest · « **Reply #116 on:** August 31, 2015, 10:53:08 pm »

Quote from: Philadelphia on August 31, 2015, 10:45:13 pm

162 days done, 6 days left.

Way to go, Philadelphia! almost there!

kim

Cal · « **Reply #117 on:** September 01, 2015, 06:33:58 pm »

Hooray. Good on you Philadelphia.

Cal

ms.nomoreC · « **Reply #118 on:** September 02, 2015, 12:01:11 am »

Philadelphia,

SIX MORE DAYS!!! MAYBE LESS FOR YOU. IT MAY BE TOMORROW FOR YOU ALREADY!

Almost there!!

sapphire101 · « **Reply #119 on:** September 02, 2015, 09:47:12 pm »

Three days...

drummerman · « **Reply #120 on:** September 03, 2015, 07:22:05 pm »

almost there!

rooting for ya!

dm

Philadelphia · « **Reply #121 on:** September 04, 2015, 06:18:57 am »

Three days of tablets. Then no tablets.

Cal · « **Reply #122 on:** September 07, 2015, 03:55:06 am »

Oh Phily,
You've done a tremendous job, well done. Pat yourself on the back from me darling girl. Cal

ms.nomoreC · « **Reply #123 on:** September 07, 2015, 09:03:53 pm »

Done, done, and well done!!

Yay!

KimInTheForest · « **Reply #124 on:** September 07, 2015, 09:08:55 pm »

Way to go, Philadelphia!! This calls for a celebration!

kim

Philadelphia · « **Reply #125 on:** September 08, 2015, 05:52:02 am »

NO TABLETS.

I took my final dose last night. Do you know how weird it is to eat at whatever time you want? I had an early dinner tonight! I didn't tKe tablets with my food! Strange behaviour, I know.

I'm not heading to my treating hospital until 17 Sept, so will do late EOT test then. I like to keep them all from the same lab if possible, rather than some from my local lab and some from the Sydney hospital's lab. That's quite okay with St Vincents. I'll do my tests as soon as I get to the city from the airport that way the LFTS, UECs and FBCs should be done in time for my specialist appt that afternoon.

So now I guess I move to the virtual waiting room. I'll keep blogging and heaven only knows I'll still bore you with my ramblings here.

Thanks to everyone for their support, especially in the first month which was by far the hardest.

slats1056 · « **Reply #126 on:** September 08, 2015, 03:53:47 pm »

Philadelphia, Absolutely fan- freaking-tastic for You. Good luck, got everything I can cross crossed up for you. You BORING?

REALLY, I think not. Keep in touch & let us know the good news as soon as You get done with the Happy dance!! Good wishes & Good health to You & all the guys down under in the wonderful land of Oz!!!

Bree · « **Reply #127 on:** September 08, 2015, 05:00:02 pm »

Way to go Philly! That's got to be a change and an adjustment to be centered around pills and all of a sudden, pau (Hawaiian word for finished)!!! Thank you for being a good support through your treatment!

Cal · « **Reply #128 on:** September 08, 2015, 06:15:10 pm »

Good on you pal, Cal

sapphire101 · « **Reply #129 on:** September 08, 2015, 11:58:22 pm »

Welcome to the other side Philly!
No more pills, but a lot of time to think and blog until that final SVR.

ms.nomoreC · « **Reply #130 on:** September 14, 2015, 12:05:29 pm »

Hi Philadelphia,

I posted this on my thread, but I wanted you to know.

My EOT labs are back! All of them! It's going to take a minute to really absorb this, but I'm soooooo relieved! At just two weeks after treatment, I'm already feeling my body rebounding from the Vpak and RIBA. Wow!!

VL 0 and undetectable
ALT 18
AST 19
Bilirubin .6
AFT 4 (down from a high of 9)

I'm so glad to be making this journey in the company of other kind and optimistic souls! My SVR labs are in 12 weeks--early December--like yours! Can't wait to be able to post encouraging news. The odds are good! No matter what, I will be taking action to ensure the end of HEPC in my body! Iknow you have and will, too. I fervently hope you are done with treatment.

Thanks for your calming voice and your kind encouragement!
Wishing us all SVR cure and long healthier lives,
ms.nomoreC

Philadelphia · « **Reply #131 on:** September 17, 2015, 04:17:53 am »

I'm heading back home after an action packed day in Sydney - ferrying around my parents who, let's be frank, move at a snails pace.

But on to the appointment. I went in when I first landed to do my bloods, so they'd be there for the appointment. I'm 10 days post treatment cessation so I figured the bloods would show something in the way of progression.

ALT - 18
AST - 23
GGT - 25
e-GFR - 77
Bilirubin has plummeted to 19
Albumin - 40

All blood chemistry coming back into normal range - bili and alk phos the only ones out of range now.

All haematology coming back towards range and looking better than at any time during treatment. Platelets still low on 79.

Amazing.

Greg says it looks as good as he can hope for at this stage. He's just going to wait till 12 week post, but said if I wanted a test in 2 weeks I could arrange one. He said he was pretty confident it would come back as this one has.

He is REALLY pleased. He says he doesn't want to jinx anything, but it's looking good.

A good day.

Cal · « **Reply #132 on:** September 17, 2015, 08:12:59 pm »

Me.nomorec,

I think I read that on your thread and can't remember if I posted back! Brain is still AWOL. But brilliant result. You're looking great for SVR. Another hep c virus
Bites the dust!
I too feel lucky to have these kind and wise souls helping me through this messy journey. I can't thank everyone enough. Cal

Cal · « **Reply #133 on:** September 17, 2015, 08:15:04 pm »

Phily,
You're looking great for SVR too. Just have to ride out post tx while bodies immune system adjusts to not being on red alert for so many years. It's a big adjustment for the body. You've done so well. Cal

Philadelphia · « **Reply #134 on:** September 22, 2015, 08:47:05 pm »

Just has a call from St Vincents hospital - 10 day post EOT viral load undetected.

Un. De. Tect. Ed.

lporterrn · « **Reply #135 on:** September 22, 2015, 08:52:02 pm »

Hooray!! Bodes well...

slats1056 · « **Reply #136 on:** September 22, 2015, 11:51:06 pm »

Yippee Ki Yaa Philly. Looks like that dog will hunt. Happy, Happy,Happy for You.

TIPS ON HOW TO RIDE A HORSE, STEP ONE-MOUNT THE HORSE. STEP TWO-STAY MOUNTED! LOL.

Philadelphia · « **Reply #137 on:** September 23, 2015, 06:27:07 am »

Thanks Lucinda.

Yep Slats, when I am teaching little tackers to ride I tell them the most important thing is to keep the horse between them and the ground.

Cal · « **Reply #138 on:** September 23, 2015, 06:42:26 am »

Great news possum. Brilliant work. Cal

ms.nomoreC · « **Reply #139 on:** September 23, 2015, 07:50:56 pm »

Quote from: Philadelphia on September 22, 2015, 08:47:05 pm

Just has a call from St Vincents hospital - 10 day post EOT viral load undetected.

Un. De. Tect. Ed.

Yay! UNDETECTED!! Terrific news, just the news you want to have! Now just one more wait. We're nearly there!

Clapping and doing the happy dance (a bit on the spazzy side) for your great news!

Philadelphia · « **Reply #140 on:** September 23, 2015, 09:14:33 pm »

Indeed msnomorec- we are marching along together despite being separated by an ocean.

Here's to our successful completion.

Cal · « **Reply #141 on:** September 26, 2015, 06:25:02 pm »

Phily,
I can't recall the thread where you told me about the app from Liverpool Hispital. Is Viekira this one? OBV/PTV/r + DSV.? Tt
Hen also tick ribavirin? Just being pedantic? Cal

Philadelphia · « **Reply #142 on:** September 26, 2015, 06:26:10 pm »

Yes and yes.

Cal · « **Reply #143 on:** September 26, 2015, 07:00:11 pm »

Thanks and obliged. Cal

Philadelphia · « **Reply #144 on:** September 30, 2015, 12:10:25 am »

This is cross posted in the post treatment forum, but I know some people on treatment don't like venturing in there yet, so ... here it is again.

There's a big push on at the moment in Australia to have the new DAAs listed on our government funded medication list.

My blog post today is dedicated to those people and organisations who have been working so hard to get our message across in the media. It's also a plea for people to speak up themselves if they feel comfortable doing it. It's time for access.
http://blogs.hepmag.com/gracecampbell/2015/09/hepatitis_c_australi_4.html

Cal · « **Reply #145 on:** September 30, 2015, 01:13:50 am »

Hear hear Philly,
I have been a part of Hep Australia's ongoing campaign to let our stories be heard. My story and my sons reply were printed in a book they recently handed to the Government. They are extremely proactive.
As you wrote, it is time for us to stand up for ourselves and for those who cannot stand for themselves. As someone here on the forum said, "We stand on the shoulders of giants" those who have gone before us. It makes me so sad to think of those of my HCV community friends who have passed and are currently dying or told to late for tx but there is an equally large number waiting, warehoused by the government. Apparently todays figures released by Hep NSW state that HCV deaths have gone up 148%. Without these drugs it will only get worse. People who don't need to die who can tx NOW.
Let's do what we can.

Story:
I did a TV interview 6 months back with a well known reporter. As we were taking a break and chatting in general, the Cameraman told us he had Hep C, and that his sister and her daughter did too. The reporter was gob smacked. She said that she didn't know that and that she didn't realise Hep C was such an issue until that day.

Cal

Philadelphia · « **Reply #146 on:** December 02, 2015, 12:59:36 am »

I've resurrected this old thread to post a celebration.
After 28 years, I am virus free.
SRV12. Got my results today.
Now I'll go post it in the post treatment thread for Viekirians.

KimInTheForest · « **Reply #147 on:** December 02, 2015, 02:01:43 am »

FANTASTIC PHILADELPHIA !!!

Cal · « **Reply #148 on:** December 02, 2015, 02:16:25 am »

Phily,
I posted on the other thread but hell, it's a party!

Good On you !!!!!!!!!!!!!!!!!

;

chuck3a · « **Reply #149 on:** December 02, 2015, 02:32:17 am »

Philadelphia,
That is some great news. So glad to hear of a another successful journey.

Philadelphia · « **Reply #150 on:** March 13, 2016, 08:47:43 am »

It's rapidly approaching the anniversary of me starting treatment. 23rd March 2015. What a year it's been!

I can't believe this time last year I was anxiously waiting for the go-ahead from the team at St Vincents (and despite typing St Vincents for over 12 months, I still get it wrong. Every Single. Time.)

Time flies.

AussieRosa · « **Reply #151 on:** March 13, 2016, 08:53:31 pm »

I'm so pleased for your successful outcome, Philadelphia. You battled the beast, and eventually you were victorious. Well done. How would you say it has changed things for you on a day to day basis?

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