Author Topic: Starting Harvoni!! (Read 369806 times)

readynow · « **Reply #400 on:** February 03, 2015, 09:51:20 am »

Congradulations Catniss. I just learned am undetected after four weeks. Will take
a while to process this information for me. Time to relax a little. Enjoy the process.

WaltFrazier · « **Reply #401 on:** February 03, 2015, 10:52:52 am »

Congrats Catniss! Hopefully you will stay that way forever! Forget about April 30th LOL.

catniss · « **Reply #402 on:** February 03, 2015, 11:02:38 am »

Thanks ready now and WaltFrazier. Positive vibes to all.

Lynn K · « **Reply #403 on:** February 03, 2015, 11:44:38 am »

Awesome catniss that is fantastic news fingers crossed for your SVR 12

Long_Haul · « **Reply #404 on:** February 03, 2015, 12:27:07 pm »

Congratulations Catniss! Great News. I am in the same boat as Ready Now, it will take a while to get my arms around being undetected after 30 plus years. You will be undetected at SVR12, we are all pulling for you.

Al

Katie · « **Reply #405 on:** February 03, 2015, 01:32:11 pm »

WoooHooo!!! Congratulations Catniss!!

Wonderful news! Now the waiting begins. I know that will be hard for me but at least the worst of winter is in the past and spring will be coming, with rejuvenation! Do something special for yourself today and enjoy your success!

Katie

badbradley · « **Reply #406 on:** February 03, 2015, 08:27:25 pm »

Quote from: catniss on February 03, 2015, 09:17:31 am

Blood work came back UNDETECTED! Now if I can just stay that way until April 30th I will be fully cured! Wow. On cloud nine.

Good for you catniss! On to SVR12. CURED!
Brad

kate0b1 · « **Reply #407 on:** February 04, 2015, 06:11:23 am »

sorry I'm late cants, congrats! @katie, spring is on the way (I'm calling BS on the groundhog) it was pouring rain all morning lol, I'm having spring !!!

kate

Mugwump · « **Reply #408 on:** February 04, 2015, 07:18:51 am »

Quote from: kate0b1 on February 04, 2015, 06:11:23 am

sorry I'm late cants, congrats! @katie, spring is on the way (I'm calling BS on the groundhog) it was pouring rain all morning lol, I'm having spring !!!

kate

I think what is happening to the Canadian prognosticator(s) might be some weird form animal caused larceny. And they might just be getting even with us humans. There are reports of strange tasting deep fried sweet and sour pork showing in some really bad restaurants in the Wiarton area of Ontario Canada where there is still a large population of ground hogs. But then again the Chinese food in Ontario has always been well known for being vastly inferior to ours out West. I know I ate in one bad establishment on the road years ago in Portage la Prairie Manitoba going to see my wife's parents and had a suspiciously bad sweet and sour pork with tiny bones in it.

Considering that the restaurant was on the trans Canada Hwy and there were a great many little critters that are close relatives of ground hogs that ran across the road and got hit by cars all the time, I suspect that the cheap gnarly meats on the menu might just have been relatives of Wiarton Willey and Punxsutawney Phil. Perhaps they have some kind of union and are going on work to rule campaign. Even though they are fat little critters that should be good for the table rumor has it that they are not good to eat and will bring bad luck upon the diner and cook! I know every time I go fishing in the Cariboo and consider having a fat marmot for lunch bad karma and terrible fishing is the result.

Katie · « **Reply #409 on:** February 04, 2015, 12:49:31 pm »

Eric...that is terrible for my first read of the day. Yuck! An uprising of groundhogs in that area is well deserved at that rate! HA! As for marmots, they are such interesting little critters. I was in the middle of nowhere, driving up an old mining road to a galcier and stopped to photograph them I had one come up to me within 4 feet, and I got some great shots with blooming fireweed in the background.

Another day and I am going to be bad. I am going to make a chocolate cheesescake...just half recipe..as I have been craving someithing rich and creamy. That should do it. shhhhh don't tell anyone!

Katie

KathyNJ · « **Reply #410 on:** February 04, 2015, 05:50:16 pm »

Hi Catniss -- congrats on your wonderful news. You will have a wonderful, hep free life! Wishing you and all successful outcomes.

catniss · « **Reply #411 on:** February 04, 2015, 05:54:16 pm »

Thanks everyone for the congrats. Waiting the 4 days for lab results was torture. I really need to stop the negative thinking. Winter is far from over in Maine. I think we are going to have snow until may or June. The snowbanks are so high and it just keeps coming. Chocolate therapy sounds good Katie. I did treat myself to 2 new Kate spade bags for the summer and an extra massage this month.
Have an awesome night everyone
Catniss

DeeDee · « **Reply #412 on:** February 07, 2015, 10:05:24 am »

Good Morning

Congratulations Catniss !!!!! This is such great news.
Second bottle being delivered today and I am not budging until ups comes. Spoke with My Path and this co pay will be $5.00 instead of $70.00. Thanks everyone.
Rash has gone away it stayed for 5 days, I just drank more water than usual. I was snowed in (NE PA) so wasn't able to visit the Dr. It's good to be able to email them.

Have a good weekend everyone.

catniss · « **Reply #413 on:** February 07, 2015, 10:15:50 am »

Thanks Dee Dee. Know what you mean about the snowed in thing. Thank god my doc appointment and blood work was between snow events.

Asherah12 · « **Reply #414 on:** February 07, 2015, 10:31:23 am »

Hi Scorpio:
I wouldn't worry about it. I got tested at 5 weeks and then 8; both were no detectable viral load, down from 2 million. I worked the whole time I was on it. Just completed the other day. The best thing I found for the headaches the first few days was self-acupressure massage to liver heat clearing points(ask an acupuncturist). Just below the wrist between the two bones which go to the ring finger and pinkie. Press there. It will relieve the headache.

Asherah12 · « **Reply #415 on:** February 07, 2015, 10:32:07 am »

Hi Scorpio:
I wouldn't worry about it. I got tested at 5 weeks and then 8; both were no detectable viral load, down from 2 million. I worked the whole time I was on it. Just completed the other day. The best thing I found for the headaches the first few days was self-acupressure massage to liver heat clearing points(ask an acupuncturist). Just below the wrist between the two bones which go to the ring finger and pinkie. Press there. It will relieve the headache.

azsmitty · « **Reply #416 on:** February 16, 2015, 07:17:42 pm »

Hi it's been a while since I've been on.
Welcome to everyone that's new and congrats to all that have gone UD.
Readynow, the blood tests I had done at 2 weeks were just to check general blood work. I have now had my one month blood work done and my doctors MA just called to tell me I am UD. My VL at the beginning was 1.3 mil

feels great

Long_Haul · « **Reply #417 on:** February 16, 2015, 07:40:38 pm »

Congratulations AZSMITTY! Great news, keep up the good work. You will be at SVR before you know it.

Best wishes,

AL

Katie · « **Reply #418 on:** February 16, 2015, 09:22:34 pm »

Quote from: azsmitty on February 16, 2015, 07:17:42 pm

Hi it's been a while since I've been on.
Welcome to everyone that's new and congrats to all that have gone UD.
Readynow, the blood tests I had done at 2 weeks were just to check general blood work. I have now had my one month blood work done and my doctors MA just called to tell me I am UD. My VL at the beginning was 1.3 mil

feels great

Way To Go AZ Smitty! Keep doing what you are doing as you are killing that alien monster. Hope I can say the same in a couple weeks!

Katie

Tiger · « **Reply #419 on:** February 17, 2015, 01:10:55 am »

Hello everybody,

New here - but I did read quite a few threads before joining. Thanks to everybody for sharing their stories and progress and wishing you all to get rid of this and forget about it - if at all possible!
Anyway, here's my story:

Age 53, Diagnosed 2007, 1b - could have contracted as early as the early 80-ies - when I was young and careless, or as late as 2005, when I lived in the country where almost every second person has it - from a dentist, possibly...

My wife diagnosed shortly after me, but surprisingly with a different GT - 2, must have gotten it elsewhere, most likely also from a dentist, or a spa/salon/nails place in the same country.

Jumping ahead - she underwent 12 weeks of Sovaldi/Ribo last summer, was UD 4 weeks into treatment and SVR12 in Dec. 24 weeks coming up end of March - keeping fingers crossed!

Back to myself: had a biopsy less than a moth ago - f2, VL about 0.5mil, had slightly elevated ALT for a few years now, but not too much at all.
Recently my primary doctor in consultation with my GI doctor tried putting me on Lipitor, but in a month my liver panel doubled up and they got me off it immediately.

Surprisingly, took a little over 2 weeks after biopsy to get approval from the insurance for 8 weeks of Harvoni, got the first bottle on Saturday and took first pill this morning - Monday.

From reading posts here, was expecting at least some unpleasantness, if nothing else - fatigue (in addition to the regular that I got used to) and/or headache, but am absolutely amazed by lack of anything even mildly unpleasant - on the contrary, kinda feel better - have more energy! Keeping fingers crossed that it's going to stay that way for the entire 8 week course. Will try to keep you posted.

One thing that I noticed though is the feeling in/of the liver - kinda a reminder that it's there and is not doing particularly well, if you know what I mean... It's similar to what I would get if I had couple of glasses of wine, which I haven't done in quite some time. Other than that, so far just great!

One question to you all: I read here you guys repeatedly emphasizing drinking a lot of water and my wife was told the same when she was on her treatment and she did drink a lot of water which was a major discomfort as she had to go almost every 15 min. I spoke with the pharmacist before starting my Harvoni and asked him about this and he said that there's no need for plenty of water other than a full glass when taking the pill to help dissolve it when not taking with food...

Any thought, I don't want to be running to the bathroom several times an hour and then to have to get up at night, which I don't have to do now, but given the age group can easily get to that...

Any thoughts?

Thanks very much and may the force be with you

Lynn K · « **Reply #420 on:** February 17, 2015, 03:19:18 am »

Congrats on starting Harvoni

Here is an article from the Mayo clinic about drinking of fluids it doesn't necessarily have to be water.

http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/water/art-20044256

Water: How much should you drink every day?

How much water do you need?

Every day you lose water through your breath, perspiration, urine and bowel movements. For your body to function properly, you must replenish its water supply by consuming beverages and foods that contain water.

So how much fluid does the average, healthy adult living in a temperate climate need? The Institute of Medicine determined that an adequate intake (AI) for men is roughly about 13 cups (3 liters) of total beverages a day. The AI for women is about 9 cups (2.2 liters) of total beverages a day.
What about the advice to drink 8 glasses a day?

Everyone has heard the advice, "Drink eight 8-ounce glasses of water a day." That's about 1.9 liters, which isn't that different from the Institute of Medicine recommendations. Although the "8 by 8" rule isn't supported by hard evidence, it remains popular because it's easy to remember. Just keep in mind that the rule should be reframed as: "Drink eight 8-ounce glasses of fluid a day," because all fluids count toward the daily total.

I am going with the Mayo clinic on this. Once accustomed to 8 each 8 ounce glasses plus a bit more you will have less of the every 15 minuets bathroom trips. Part of it is getting used to what you should be drinking anyway. And to avoid the night time trips try to front load the water earlier in the day.

Basically it is to flush out the meds as they are partly excreted through the kidneys so it is to help your kidneys get rid of the meds.

Congrats to you wife and good luck on treatment

Tiger · « **Reply #421 on:** February 17, 2015, 04:13:41 am »

Thanks, Lynn!

I hardly drink any water, but I do get fluids, probably not much less then 2 liters - mostly coffee - a lot of it, 5-8 cups, some tea... my wife tells me that doesn't count - should be water... So I was curious if I should force myself to drink another liter or more of water in addition... Is coffee OK?

One other thing, I usually work out 3-5 times a week - nothing too intense: 2-3 miles/30-40 min on a treadmill with max incline (15%) @ 4.2-4.4 m/h, but it does get my heart rate up to about 145, sometimes 150. Then I do some sauna/steam. Should I continue? Do more? Do less? I do drink some water after workout and sweating, but not too much... Prefer coffee...

Thoughts?

Thanks!

Lynn K · « **Reply #422 on:** February 17, 2015, 04:21:30 am »

I do suggest you speak with your doctor but coffee while it does provide liquid it also has a diuretic effect you still get more fluid than what you eliminate but not as efficient fluid intake than non caffeine beverages also the diuretic effect could also be a factor in those frequent bathroom trips.

My totally non medical opinion would be to trade off some of the coffee for a non caffeinated beverage but like I said for a better answer check with your doctor.

Cheers!

kate0b1 · « **Reply #423 on:** February 17, 2015, 06:23:13 am »

@tiger, i am a coffee girl myself but have traded some in for plain water, i feel much better drinking more plain water. on the w/e i sort of slip back to not as much water and almost always feel crappy by bed time.

kate

DeeDee · « **Reply #424 on:** February 19, 2015, 07:19:12 am »

Good Morning Everyone,

It's been a minute since I signed on...Congratulations for all who are UD. What a wonderful feeling! I have 16 pills left.

I am a coffee girl too but have pushed myself to drinking at least 4 bottles of water a day. I feel fine, awaiting Blood work on the 6th of March. Dr apt on the 9th. I was taking vitamin D and I think that may have caused the rash, I stopped taking it for now.

Tiger, my first thought was that I contracted from a dentist also. I remember getting very sick back in the late 70's shortly after visiting a dentist. I was so sick my eyeballs hurt. The Dr. said I had the flu. I had never been that sick. But then I had a blood transfusion in the 80's. So I really don't know how it came on.

I have a question...I notice that the Doctor sent my results to the Dept of Health in my state... Are they suppose to do that?

Have a good day everyone and keep warm.

readynow · « **Reply #425 on:** February 19, 2015, 06:06:43 pm »

Hi:
Department of Health. Don"t know about that. I have two days left of my eight weeks. It went by fast. I want to do twelve, but Dr. said I don't need it. I said "what if I relapse?" He said we can decide about that if it should happen.
According to the Gilead trial results, the same SVR results were recorded in 8 week treatment as twelve week treatment in patients with similar parameters. (no prior
treatment with less than 6 million VL and mild fibrosis) I could do self pay for a few more weeks, but can't really afford that. I'm going to miss the daily evening ritual. I do sleep really well for about four hours after I take it. I guess wanting to continue for 12 weeks has to do with wanting to feel as positive as possible about my future. But the reality is eight weeks of therapy and that is it. Best wishes to all.

Katie · « **Reply #426 on:** February 19, 2015, 06:46:12 pm »

Hi Ready, Best Wishes to you too. I have 7 days left of my 12 week treatment and I am anxious about quitting too. I think we all just want to be CURED forever of the alien monster parasite and not have to look back. I figure since we are the first group to be on Harvoni, we are going to be important in setting future guidelines for the treatment. The big test will come 12 weeks and 24 weeks after EOT and that is what I am really nervous about.

Did you have a 4 week test? I came back with a VL of 59 and at the time thought that was terrific but now with so many showing UD within that time little doubts raise their ugly head. HA! Then I remember it really depends on the sensitivity of the tests and that the big test will be to see if there are any little buggers hiding out and replicating.

What is interesting is that I felt better than I had in years and felt 10 years younger during the first 8 weeks and then week 9 & 10 I had severe fatigue, body aches, my tinnitus got worse and I was all gloom and doom. Then this past week I perked up again and am feeling really good, but do get tired around 2 or 3 where I really don't want to do anything.

So maybe it is time to stop medicating and start clearing my system out and see where I stand. No matter what my results are, I know they are working on this and if I need to try again, I will, insurance willing.

So here's to good luck to all of us and supporting each other through the waiting period is going to be more important than ever. I will have my blood work done on the 26th or 27th so I am right behind you. Keep in touch and I will be thinking good thoughts for your freedom of Hep C! Healing light is coming your way, from Alaska!

Katie
(can you feel it?)

Tiger · « **Reply #427 on:** February 19, 2015, 06:50:01 pm »

DeeDee,

The only reason for your doc's office (it's probably some clerk there - not the doc) to send your test results to the government that I can think of is if they are paying for it...

Other than that, isn't all medical information supposed to be private and confidential? Unless there's some regulation in your state that requires all cases of specific contagious diseases that represent public safety threat to be reported, which would still be surprising for his great country, but I d know that many much less free countries do practice such things...

Perhaps, you should inquire more about it - who knows, you may have a law suit on your hands that could possibly pay you many times the Harvoni treatment

Good luck with the remaining 15 and may you forget about it afterwards!

Katie · « **Reply #428 on:** February 19, 2015, 07:02:26 pm »

Doctors do submit information to the infectious disease department, but I think they are anonymous. It's the only way they can predict outbreaks, cure rates etc. It would be interesting to find out though, and I would inquire about it.

Tiger · « **Reply #429 on:** February 19, 2015, 07:06:21 pm »

Ready, my doc also said I only need 8 weeks and that I should be UD after about the first week or 10 days. Keeping fingers crossed!
Katie, I was told no bloodwork until it's over - will be going there right after 8 weeks and then (provided it's UD) again in 12 after that, which as I understand is the new standard replacing 24 - apparently, 99.8% of SVR12 were also SVR24 and then that 0.2% were 2 people with GT3, which seems to the reason, since Harvoni is approved specifically for GT1...

So, Healing Light back to you!

...and may we all look back with a smile in a few months!

readynow · « **Reply #430 on:** February 19, 2015, 07:29:09 pm »

Katie: I was UD after four weeks. 59 is almost there. It will be interesting to see
how I feel post treatment. Lets work on keeping a positive thought process about the future. Thankful for the opportunity to be prescribed this medicine and for the forum.

Katie · « **Reply #431 on:** February 19, 2015, 07:36:25 pm »

Hi Tiger..prior to 1980's the sanitation standards were much less in medical offices and then aids came out....and hep C wasn't known until 1989 to test for transfusions and plasma, so things have improved. I have no idea where I became infected and it drove me crazy for about a year until a friend told me "What difference does it make now...you have it so deal with it. " That kind of set me straight and that's a good friend.

I did want to encourage you to make a point of drinking pure water to help flush out your system. If your liver is healthy, it isn't so critical, but everything you drink and eat and even breathe has something the liver needs to work on, so during treatment, I think flushing with water is important. Since it is the organ that detoxifies everything, and it hasn't been able do do it at full capacity for as long as you have had this virus, it just seems to give it as much help as possible. I was poor at drinking water, and after keeping track and making sure I drink 1/2 gallon a day, I am now craving it if I get busy and fall behind. It does help and it will benefit you. When I have a busy day scheduled, I drink a couple glasses of water at once, and use the bathroom in about 20 minutes, and am good to go. I find that is better than just sipping it all day. Give it a try.

I caught your light, and thank you for it. Enjoy your evening!

Katie

Katie · « **Reply #432 on:** February 19, 2015, 07:39:27 pm »

Ready..Yes...positive thought always and I am good at stomping out the negative ones if the creep in.. Thank you! I too am so thankful for this treatment. I had been waiting for something that made sense for me for 9 years and am so grateful the breakthrough came in time for all of us to benefit. It is a miracle and I love science!

HHburme · « **Reply #433 on:** February 19, 2015, 08:38:23 pm »

69 days so far with another 15 days left. The time has went by fast. Not sure if I have side effects or just worn down fighting this dragon. My tinnitus is worse also. I was UD at 4 weeks so the Harvoni has worked so far, hope I stay UD and get to SVR. It will be interesting to see how I'm feeling post tx.

JB

Tiger · « **Reply #434 on:** February 20, 2015, 12:39:16 am »

Thanks, Katie, for the advice and yes, I did starts drinking more water and also switch from coffee to tea some time about 3 pm. and then 3 mile/800 cal incline fast walk...

I must say it really is a miracle drug - firstly: so many people have already gone virus free! Me personally - it's just the 4-th day, but I most definitely feel substantially better - hard to believe: I just now start to remember what normal used to be and am now realizing what I have been missing!... and no side-effects so far whatsoever!... knock on wood!

May God bless the scientists, the doctors, the insurance and above all this great country that makes it all possible!... and, last but not least, of course us all - the fighters, especially those on the front lines who have gone through cycles and still are in spirits and give encouragement to others! Than you all!

Tiger · « **Reply #435 on:** February 20, 2015, 01:09:29 am »

One other thing, Katie, you're so right about our liver having to work on all of our intakes, including what we breathe and that brings me to one question and I wonder what's the informed opinion about it out there? I'm talking about weed?

I've heard conflicting accounts: my doc says that it adds to scarring, especially daily use... so it can be making matters worse... but other say it helps with a variety of symptoms - and I'm with them on this 100%, I definitely think it kept me going all these years, but hey it may be that I just love that stuff regardless. I've also heard many people say it helps with side effects of treatments, especially the older treatments... Obviously nobody knows how it interacts with these new miracle pills...

What's your take on this? Generally, weed and living with C, weed and going through treatment, etc.

I personally am talking no chances - I figured gotta give this miracle pill all the help I can and let it do its work without any interference: you know, if it may be interacting with Milk Thristle (as it has been mentioned here and also by my pharmacists) which was one thing that kept my liver relatively subdued for almost 10 years - who knows what THC can be up to in this regard... So I have stayed away from weed and tobacco for almost two months before starting the treatment (alcohol has been out for much longer now) and I will most likely continue this way after EOT, at the very least no cigarettes ever again - no going back to that!... but with weed - don't know about that, I may light up in celebration if SVR12!!!

Thoughts, experiences, ideas, comments?

Katie · « **Reply #436 on:** February 20, 2015, 01:45:02 am »

Alcohol...no maybe I'll have a glass of wine in a year or so or maybe even a cold beer on a hot day, but I do not have cirrhosis and I will not rush into it if ever.

Cigarettes....no and congratulations!

Weed....has many medicinal benefits, although I am not a consumer. Never liked it. CNN had a great special on medicinal marijuana that you might want to check out. It's 2 parts and shows how it has helped doing remarkable things but is highly specific and grown for special traits for different conditions. Not just street quality, to be effective. Hep C or the liver was never mentioned and I think you are smart to stay away from it during treatment.

I used milk thistle, reshi mushrooms and lecithin granules (fat emulsifier) for years and believe they helped before treatment as my liver remained in good shape and liver enzymes were normal 90% of the time, and only raised slightly when I had a cold or flu. I stopped all supplements other than some Vit D every once in awhile and Vit B complex as needed, and always about 6 hrs before Harvoni. I am very fortunate because I am healthy other than joint issues and of course the Hep C. Otherwise no pharmaceuticals or any other chronic condition. I feel so fortunate as being med free at 68 is pretty good!

So, I am ready for my last week countdown to get off of this medication and hopefully clear this alien monster and get on with my life. It really took a toll on me the past 3 or 4 years causing me to retire, and like I have mentioned, I feel 10 years younger and better than I have in a long time. Best part, my insomnia of 10 years is GONE! Sleep is a wonderful, healing thing and I hope it stays that way once off Harvoni. I will be devastated if I start having sleepless nights again.

So that's my opinion but I haven't heard of interactions with weed, and haven't even seen it mentioned anywhere so I would avoid it, at least for now.

Good night....bedtime. Sweet dreams to everyone still up!

Katie

Lynn K · « **Reply #437 on:** February 20, 2015, 02:51:15 am »

About the reporting to the Dept of Health. I did a quick search and I would guess it may vary from state to state or maybe not.

I found by searching hepatitis c reporting requirements department of health. A number of states were listed.

Here is what I found for my state Washington:

http://www.doh.wa.gov/ForPublicHealthandHealthcareProviders/NotifiableConditions/HepatitisC

Hepatitis C

Cause: Hepatitis C virus, which has 6 genotypes.

Illness and treatment: Most acute infections are asymptomatic but about 20% of cases have abrupt onset with fever, abdominal pain, and jaundice. Chronic infection is typically asymptomatic until complications such as liver damage or cancer develop; a specialist can determine treatment options.

Sources: Transmission is usually by contact with blood, particularly while sharing drug paraphernalia, or less commonly semen or vaginal secretions of an infected person.

Additional risks: Chronic infection follows acute infection in 75-85% of cases and is more likely for males, those infected after 25 years of age, or the immunosuppressed including HIV co-infection.

Prevention: Use safe sexual practices, avoid sharing drug paraphernalia, and screen blood and tissue products to prevent transmission.

Recent Washington trends: Each year fewer than 30 acute cases and around 5,700 chronic cases are reported. Current chronic hepatitis reports are posted on Washington state's chronic hepatitis surveillance page,
Purpose of Reporting and Surveillance

To identify sources of infection and to prevent further transmission from such sources
To educate cases and contacts about transmission of hepatitis C virus and how to reduce the risk of transmission
To better understand the epidemiology of hepatitis C virus infection and the burden of morbidity from chronic infection

Legal Reporting Requirements
Acute Hepatitis C

Health care providers: notifiable to local health jurisdiction within 3 business days
Health care facilities: notifiable to local health jurisdiction within 3 business days
Laboratories: Hepatitis C virus (detection of viral antigen, antibody or nucleic acid) notifiable on a monthly basis
Local health jurisdictions: Acute cases notifiable to the Washington State Department of Health (DOH) Communicable Disease Epidemiology (CDE) 206-418-5500 within 7 days of case investigation completion or summary information required within 21 days.

Chronic Hepatitis C (initial diagnosis only)

Health care providers: notifiable to local health jurisdiction within one month
Health care facilities: notifiable to local health jurisdiction within one month
Laboratories: Hepatitis C virus (detection of viral antigen, antibody or nucleic acid) notifiable on a monthly basis
Local health jurisdictions: Chronic cases (initial diagnosis only) notifiable to DOH Infectious Disease and Reproductive Health (IDRH) 866-917-4437 within 7 days of case investigation completion or summary information required within 21 days.

The department of health for each state maintains records of illnesses affecting the communities cities and counties under their jurisdiction. Just like when you hear about flu out breaks some where that is where this data comes from.

We are but data points on a chart

Lynn

Mugwump · « **Reply #438 on:** February 20, 2015, 04:19:01 am »

Thanks Lynn
It would not at all be fair or sensible having those undergoing screening for this and other infectious diseases become labeled as "typhoid Marys"!

I am sure many good politicians saw this reality otherwise there would be a different type of data base that would include mug shots and finger prints as well as DNA profiles of all communicable disease infected individuals. To keep a world wide data base of individuals such as that would make the budget of the NSA explode to Mars and would be about as sensible as putting computers on Mars to keep the data base and thus the citizens of the country safe from harm. Full speed ahead to he%$ with the tax payers and budgets!

Fear only fear mongers... oh! and those who bean count human beings while masquerading as politicians or business persons for they are usually one and the same individuals.

Lynn K · « **Reply #439 on:** February 20, 2015, 04:36:10 am »

I believe all infectious diseases are required to be reported to the state health departments.

I have even heard quotes Washington State has a high incidence of Multiple Sclerosis MS than average for unknown reasons they get their data from somewhere.

Couple more links for fans of links

http://www.cdc.gov/mmwr/
Morbidity and Mortality Weekly Report (MMWR)

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6201a1.htm
Surveillance for Certain Health Behaviors Among States and Selected Local Areas — United States, 2010

http://www.doh.wa.gov/ForPublicHealthandHealthcareProviders/NotifiableConditions/ListofNotifiableConditions
Washington State Department of Health List of Notifiable Conditions

http://www.lung.org/finding-cures/our-research/trend-reports/estimated-prevalence.pdf
American Lung Association Estimated Prevalence and Incidence of Lung Disease

I just look at it as data keeping to monitor trends. I personally don't see it as anything insidious.

How would we know if there was a problem without data tracking to notice anomalies.

For example track records of hospitals for the outcomes of various procedures surly we would want to know these things

DeeDee · « **Reply #440 on:** February 20, 2015, 07:06:42 am »

Good Morning,

Thanks Lynn K

DeeDee · « **Reply #441 on:** February 20, 2015, 07:26:40 am »

Good Morning Everyone,

Thanks to you all...This journey has been pleasurable readynow, Katie, Tiger, Lynn K, Mugwump and HHburme

I will be looking into the reporting of it further. I read that there are 4 million people who may have it and don't know. My primary mentioned that they are screening people 60 and over for it. I was aware that the CDC are notified.
I am on countdown to having not to take another pill.

Have a blessed day

readynow · « **Reply #442 on:** February 20, 2015, 09:00:19 pm »

Just took my 56th and last Harvoni. On my own now. Labs in four weeks. Here we go. God help us all.

Tiger · « **Reply #443 on:** February 20, 2015, 09:19:39 pm »

Amen!!!

Lynn K · « **Reply #444 on:** February 20, 2015, 10:09:43 pm »

Good luck ready now

Wishing you SVR

Katie · « **Reply #445 on:** February 20, 2015, 10:16:27 pm »

Good luck to you Readynow....you aren't on your own...you have us and we are all sending you good wishes for your cure. May your life be healthy and free of HepC!

Katie

Katie · « **Reply #446 on:** February 20, 2015, 10:18:33 pm »

Lynn...how are you feeling? Hope everything is going good for you.

I am concerned about Mel. Have you heard from her where I may have missed it on a different thread perhaps?

Katie

MEG · « **Reply #447 on:** February 20, 2015, 11:53:46 pm »

Congratulations, ready! Sending you and everyone big huge "undetectable" energy.

How often do we want to test 0?.....LOL....

Lynn K · « **Reply #448 on:** February 21, 2015, 06:45:29 am »

Hi Katie

I am ok hemoglobin is low from Ribavirin but other than that 10 weeks and change to go.

I checked Mel's profile I see her last post was 2/11 and last visit was 2/17 you could always send her a message to say hi

Ollie · « **Reply #449 on:** February 21, 2015, 09:20:15 pm »

So many of us are nearing the end of treatment. I have 7 days left. Been an easy 77 days. My only concern is that my pre-treatment ache under my right ribs has returned. It was gone for the middle 4 weeks. I see my Dr. In 10 days. Last time I mentioned this achy area he kind of blew me off. I'm hoping to be able to get a Fibroscan. I want to know the exact health of my liver post Hep C. While I maintain fairly healthy habits, I'm told once we're SVR we can 'treat' our liver as if we never had this monster....My biopsy showed F1 7 years ago. I want to know if I've remained F1. One last thing-have any of you ever had a 'stitch' in your right side after bending over to i.e, tie your shoe or put pantyhose on? It almost feels like something ( my liver?) is kinked - very painful until I straighten up.
I'm so thankful for this forum and appreciate all of you contributing!!

readynow · « **Reply #450 on:** February 21, 2015, 09:43:47 pm »

Hi: Wondering who told you once the virus is gone, you can treat your liver as if you
never had it? I'd be careful of following that advice. I've had different feelings of pressure in the liver area at times. When I have indigestion, that is where I feel it.
Could be psychosomatic, since I'm always consciously and unconsciously aware that I am a carrier of this condition.

Katie · « **Reply #451 on:** February 21, 2015, 10:55:37 pm »

I would tend to think you should protect your liver after treatment, just like you have after diagnosis. The liver has been damaged and depending on the scar tissue, especially if you have cirrhosis, your liver will still be compromised and problems can arise. Granted, the liver can heal itself to a certain degree, but that takes time.

Once you are clear of the virus, for sure, you can no longer infect anyone, even though your blood work will show the antibodies. That is the good news.

Just remember it is the post treatment test at 12 weeks and I am not getting excited until 24 weeks which comes up UD. UD during treatment does not mean that your have cleared it totally because the tests are not sensitive enough to detect down to 0. Also the virus in the blood can be less than what is actually found in the liver tissue. This research is on this forum under the research thread. So always think about what you are putting into your system and what it is doing! Lesson learned having to deal with this alien virus for a decade or more.

Katie

readynow · « **Reply #452 on:** February 22, 2015, 07:58:26 pm »

Katie: That's some good advice. I don't see the research thread. How do I find that? Thanks

Tiger · « **Reply #453 on:** February 22, 2015, 08:10:19 pm »

Hi, actually here are two new threads which provide some excellent information and explanation - highly recommend to check out:
http://forums.hepmag.com/index.php?topic=2237.0
and also
http://forums.hepmag.com/index.php?topic=2236.0

Katie · « **Reply #454 on:** February 22, 2015, 08:23:31 pm »

Quote from: readynow on February 22, 2015, 07:58:26 pm

Katie: That's some good advice. I don't see the research thread. How do I find that? Thanks

Hey Ready..if you go to the top of this page and click on forum and scroll down you will see Hepatitis C Research News & Studies. There is lots of good information there and to be honest, I don't know for sure which post had that info. I've read so much. I am sure you'll find that and the other topics helpful.

Hope you are enjoying your Sunday. I just about have my bedroom painted, but had to take a break and think I'll finish it up tomorrow. Tired out. Feels good to accomplish something though. <Big Smile>

Katie

atomic dog · « **Reply #455 on:** February 28, 2015, 01:28:22 am »

Quote from: lporterrn on December 02, 2014, 12:05:34 am

Wow, you were lucky to get the meds with relative ease. You could ask for more frequent labs, but really, not sure it is clinically necessary. assuming you are "all in" regardless of what the labs show.

On Day 12 and already had blood work, noticeable drop in ALT and AST and it is reassuring to be able to see those numbers--wouldn't want to wait till six weeks, but rest assured that Harvoni is a powerful drug and despite the usually mild side effects chances are high that it's doing its job.

HHburme · « **Reply #456 on:** March 06, 2015, 11:06:12 am »

Day 84..... just swallowed my last orange miracle pill !! The treatment is over ! Now I hope to stay UND and achieve SVR and finally be done with this leech of a disease that had been slowly attacking me since I was 18 years old. Experiencing a multitude of feelings right now and would like to thank everyone on this forum for the support,love,and information that you have given me.
Health and Happiness to all !!!

John

atomic dog · « **Reply #457 on:** March 06, 2015, 12:55:21 pm »

Quote from: HHburme on March 06, 2015, 11:06:12 am

Day 84..... just swallowed my last orange miracle pill !! The treatment is over ! Now I hope to stay UND and achieve SVR and finally be done with this leech of a disease that had been slowly attacking me since I was 18 years old. Experiencing a multitude of feelings right now and would like to thank everyone on this forum for the support,love,and information that you have given me.
Health and Happiness to all !!!

John

Congrats and wishing you good fortune!

Ollie · « **Reply #458 on:** March 07, 2015, 12:51:46 pm »

Loved that last pill-mine was exactly 1week ago. Almost feels strange not to have it as part of my morning routine. I made a countdown pad from #84 to #1 Loved teaRing off each number in the morning!! Onward to SVR, Yahoo!!

kate0b1 · « **Reply #459 on:** March 08, 2015, 07:05:07 am »

@john and ollie, i have 4 days to go

, I'm excited and nervous at the same time, best of luck guys. stay well

kate

Long_Haul · « **Reply #460 on:** March 08, 2015, 10:38:35 am »

@Kate, I am 2 weeks behind you, the 4 days will go quickly. Keep working on the cabinets, the time will fly by. Looks like it will be above freezing in VT today, Finally!

AL

kate0b1 · « **Reply #461 on:** March 09, 2015, 06:18:33 am »

@al, jezz isn't it nice to see the snow melting, its going to be in the 40's all this week, maybe spring is really coming

. I'm so happy/nervous to be done this week. i have labs on friday and then june 5th.

PS the cabinets are done, now I'm on to painting the walls (cause now they don't look right lol)

kate

Katie · « **Reply #462 on:** March 09, 2015, 12:25:29 pm »

Good Job Kate. The carpenters will be finishing up today for me! You'll have to post a picture.
Better get those walls painted before spring gets here, though! Glad the temperature is going up for you guys. What a winter you have had (in more ways than one).

There are mixed feelings with ending treatment and giving up our security blanket. My good wishes and support are right there with you.

I just know you have kicked that Alien Monster's butt and will be free to get on with your life! Hope all goes well for you. Sending a BIG ((((HUG))))

Katie

Katie · « **Reply #463 on:** March 09, 2015, 03:29:31 pm »

Update on remodel: grrrrrr carpenter called and said a big job came up that he couldn't turn down so I am on HOLD. Not happy.....but I really like him and he does great work. He's just branching out on his own and can't afford to pass up on a good paying job with duration. I even baked him an apple pie, from my home grown apples! He groaned when I told him that. Serves him right! HA!

Just had to share that as I have been talking about my remodel on and off for quite awhile now.

It will get there and I'll be a happy camper. It just hasn't been that good of a week for me. That's 2. Wonder what is coming next? (The old saying about trouble coming in threes!)

Katie

DeeDee · « **Reply #464 on:** March 12, 2015, 06:55:23 am »

Hello Everyone,
My Results after 8 weeks...I did not go undected but the levels are no longer 2,017,239. I will give blood in 6 weeks

HCV RNA HCVXD IU/mL <15 A
HCV RNA Detected, Not Quantifiable
LOG OF HCV 0 log IU/ml <1.18 H

HCV RNA COMMENTS
COBAS Ampliprep/COBAS TaqMan HCV Test v2
(Roche Molecular Systems) for the direct
quantification of HCV RNA in plasma of
HCV-infected individuals. The reportable range
for this test is 15 to 100,000,000 IU/mL. The
limit of detection is 11 IU/mL. Results greater
than or equal to 11 IU/mL but less than 15 IU/mL
are above the limit of detection but below the
lower limit of quantitation.

A little disappointed but I will continue the battle...And just a thought I gave blood on the 6th but that night I took my last pill.

Have a good day everyone

zora1959 · « **Reply #465 on:** March 12, 2015, 09:59:52 pm »

Hello Everyone,
I put in my script last Saturday March 7th 2015, at the pharmacy. I am happy to have received my Harvoni & Ribavirin on today the 12th. I'm very surprised that I got the meds so quickly. My viral load was pretty high maybe that worked in my favor, I also am a 2x non-responder. Still waiting to exhale, I will begin my meds on Sunday. I'm thankful to be able to share with you on this forum.
Thanks Zora1959.

Ollie · « **Reply #466 on:** March 12, 2015, 10:29:32 pm »

Good luck Zora. This is YOUR time!!

Katie · « **Reply #467 on:** March 12, 2015, 10:37:20 pm »

Hi Dee Dee, Are you taking Harvoni for 12 weeks or just the 8? I came back detected after 12 weeks and my report was <12 detected, so my test must be a bit more sensitive than yours. It didn't give me the level of sensitivity for being able to detect so that is something I am going to ask about.

It is disappointing, however we are responding to the treatment and if you have another 4 weeks on Harvoni I am sure you will be fine.

My doctor told me today, that I shouldn't stress about it and he wants another test in a month so here's hoping we both come back with that magic word of Undetected.

You aren't alone and we'll be fine!

Katie

catniss · « **Reply #468 on:** March 13, 2015, 08:22:48 pm »

Hi everyone. It truly is Friday the 13th. Got 6 week after treatment labs done Monday. My doc really does not put much faith in the 6 week lab results. Just a positive motivation for me so I had them done. The lab I went to runs the test every Thursday so I call doc office today for results. She called me back and said the lab could not run the test because not there was not enough blood to work with. Now the lab tech was having a hard time with the needle and I asked her to try the other arm but she said everything shouybe fine. Well I guess not and they waited for me to call and ask about it. Needless to say I was pissed. Talked to a customer service person and the head of the lab is supposed to call me back. What a day. My doc called new lab work into a different place but can't do anything until Monday. Thank god this is not the 12 week labs.

Katie · « **Reply #469 on:** March 13, 2015, 08:33:09 pm »

Hi Catniss...I am so sorry. It is terrible on your stress level when incompetence happens. Hopefully all will be fine with you but since you already were UD I am confident you are on your way to a complete cure!. I'll keep you in my thoughts!

Katie

catniss · « **Reply #470 on:** March 13, 2015, 08:40:56 pm »

Hey Katie. Thanks for the kind words. Just had to vent. I read the painted drum and loved it. Also don't know how far you are from the northeast but when you are done tackling your house projects I have a few I could use help with. The pay is fresh lobster.

Katie · « **Reply #471 on:** March 13, 2015, 08:48:03 pm »

Venting is good, Catnis! I am clear across the country in SE Alaska...the Great Northwest, but boy, that lobster sounds good. I could maybe trade for some salmon!

Good hearing from you and I'll be thinking of you next week!

katie

Katie · « **Reply #472 on:** March 13, 2015, 08:49:56 pm »

Also..I just ordered another one of her books and read the Round House too. So far, The Painted Drum is my favorite.

catniss · « **Reply #473 on:** March 13, 2015, 08:54:28 pm »

I also read the round house. Good book.

catniss · « **Reply #474 on:** March 13, 2015, 08:57:11 pm »

I lived in the pacific northwest for 5 years and miss the salmon and halibut. My husband made it to Alaska for 1 night. His last boat in the navy was the USS Alaska.

Katie · « **Reply #475 on:** March 13, 2015, 09:05:22 pm »

I have always wanted to visit the New England states. Maybe someday. I love it here and am very content to stay put. If I ever free myself of HCV I may put my wandering shoes back on.

DeeDee · « **Reply #476 on:** March 14, 2015, 09:27:04 am »

Good Morning,

@ Katie, it was for 8 weeks, It is disappointing, however we are responding to the treatment.Yes i am sure we will be fine and hoping we both come back with that magic word of Undetected.

@ Catniss, just hang in there, I feel you...it took 3 days before I got my results. One thing for sure Harvoni is working for us.

@ Zora1959, welcome to this beautiful forum

catniss · « **Reply #477 on:** March 18, 2015, 11:45:41 am »

Awesome news! I just got a call from the nurse and she said my 6 week labs came back UD! She actually called me instead of me calling her a thousand times. I took Monday off from work to go talk with the lab and my doc to get some answers about the lab mess last week. Its sad that I had to do so much running around and being so forceful to get the treatment everyone deserves and should get. But I guess they know now I mean business. 5 weeks to go to being CURED!

Lynn K · « **Reply #478 on:** March 20, 2015, 08:10:00 pm »

Great news catniss I have read about 70 % or so who relapse do so in the first 4 weeks post so almost home free!!!

Congrats!

catniss · « **Reply #479 on:** March 20, 2015, 08:12:42 pm »

Thanks Lynn. I have tried to look up any research on relapse rates and no luck. Where did you find info?

Lynn K · « **Reply #480 on:** March 20, 2015, 09:11:08 pm »

I think that may have been from sovaldi tx vs riba. When you say relapse rates are you asking about SVR by groups or what is the timing of relapse Like the 70% relapse by week 4 Actually I did find something even better but still for Sovaldi but one would think Harvoni would be similar if not better

Here is a quote and a Link

Concordance data: SVR at weeks 4, 12 and 24.Traditionally, with interferon-based therapy for HCV, the absence of detectable virus 24 weeks after completing treatment has been used to define SVR24. However, recent analyses have suggested that SVR12 and SVR24 are concordant across treatments that include peginterferon/ribavirin and also peginterferon/ribavirin triple therapy including telaprevir and boceprevir, with positive predictive values of 98% for SVR12 and 91% for SVR4 [Chen et al. 2013]. The concordance of SVR4, SVR12 and SVR24 has been assessed in the sofosbuvir phase II program including 590 patients. High levels of concordance were observed between SVR4 and later time points and positive predictive values and sensitivity of SVR4 for SVR12 and SVR24 were greater than 98.5% [Lawitz et al. 2013a]. Increasing reliance on these earlier time points of SVR4 and SVR12 to determine outcomes is almost certainly accelerating the pace of drug development.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3968818/

Katie · « **Reply #481 on:** March 21, 2015, 04:05:42 pm »

Quote from: DeeDee on March 14, 2015, 09:27:04 am

Good Morning,

@ Katie, it was for 8 weeks, It is disappointing, however we are responding to the treatment.Yes i am sure we will be fine and hoping we both come back with that magic word of Undetected.

@ Catniss, just hang in there, I feel you...it took 3 days before I got my results. One thing for sure Harvoni is working for us.

@ Zora1959, welcome to this beautiful forum

DeeDee: I wanted to let you know to check the Topic: Detectable RNA levels at End of Treatment not necessarily predictive thread started by Dragonslayer. It has some [positive news for us who have been detected with low levels at the end of our treatment.

Hope you are doing well and have been thinking of you. We are in this together and you aren't alone!!! We are going to be fine.

Katie

DeeDee · « **Reply #482 on:** March 22, 2015, 08:53:39 am »

Good Morning Katie,

Ok I will read that topic. Thank you, you are a sweetheart

I am just awaiting that 6 week blood work up, praying that it will be ud. Have a great day...Hey It's Spring

Pungarson · « **Reply #483 on:** March 22, 2015, 08:08:39 pm »

Hi Everybody: I am new to the forum but not to HCV. I was diagnosed in the late 1980's with non-A non-B hepatitis. It was later confirmed to be HCV. I have genotype 1a. I am starting Harvoni this coming week. It should be arriving by mail and I am to contact my physician before starting the medication. I was reading some interesting posts last night (which I do not find now) and hope to be able gain some insights into what I can expect. I am taking a shot in the dark with this post and see where it goes. thanks for all those who have posted and to the moderators. Good luck. Thanks

Katie · « **Reply #484 on:** March 22, 2015, 08:23:56 pm »

Welcome Pungarson and you have come to the right place for information and support. I hope your treatment is easy and successful! Harvoni is a great breakthrough and is helping so many people! The Harvoni treatment can have some side effects, but overall is easily tolerated and some of us started feeling better, almost immediately, than we had in years!

If you remember who posted information you want to access, go to the top of the page and you can search them and all of their posts will pop up. There are lots of different threads so it is easy to forget where you saw them. I find the Side Effects thread to be really helpful. If you click on Hep C Forums you can usually find different topics. Hope this helps.

Good luck to you and don't be afraid to ask questions. You aren't alone, and we are here for you!

Katie

Pungarson · « **Reply #485 on:** March 22, 2015, 08:50:57 pm »

Thanks Katie for the quick response and for the tip. I am looking forward to my mail tomorrow. I hope the meds arrive.

Pungarson · « **Reply #486 on:** April 07, 2015, 06:24:34 pm »

Harvoni pills arrived today! I am about to take my first dose of a 12 week therapy. It has been an agonizing few months but I am very grateful to be where I am. I thank everyone who has posted. Your tips will kept close by and I will not hesitate to share my observations or comments should the need arise. I feel like a kid taking a deep breath and jumping in the pool not knowing how deep or how cold the water is. I take some comfort in the knowledge that others have been down this road before me and there is always hope. Well here goes! Thanks

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