Author Topic: Harvoni Side effects (Read 2190789 times)

anniemybaby · « **Reply #800 on:** January 24, 2015, 06:14:10 pm »

Thanks Katie now I'm digging in my house looking for papers I know I have the results of my biopsy but I don't think I have the results of any of my blood work I will call GI Dr Monday and request copy's I'd like to keep track of my viral load next wk is my first blood test after starting harvoni I need to have blood work every 2 wks till end of treatment then she says I need to wait a total of 6 mo from time I started harvoni to be sure I'm cured

BattleTheBeast · « **Reply #801 on:** January 24, 2015, 06:19:13 pm »

Hi Annie,

Most doctors won't take the time to explain anything, I happen to be lucky and have an amazing Infectious Disease(ID) doctor who does.

The VL (Viral Load) is only important in the beginning so the doctor can review how long you have to be on treatment. They just want to know if it over or under 6 Million when you start and based on that it helps to tell them how long you should take the medication. The cirrhosis stage and if you have been treated for Hep C also help to determine the duration of the treatment. After that it only matters if the VL is still detected on Undetected.

AST and ALT levels: you can read about them here and it's easy to understand, they also talk a little about other blood tests for the liver. http://labtestsonline.org/understanding/analytes/ast/tab/test/

It will be important for you to know what stage you cirrhosis is because you will want to know if it's getting worse over the years after you are Hep C free.

SVR that people mention is Sustained Virologic Response - in English it means the blood test can't find any Hep C, so if you see SVR4 that means no virus 4 weeks after (EOT) End of Treatment. SVR8 means no virus 8 weeks after treatment and so on. The latest report is that any who reaches SVR12 is 99.8% cured and it's very very unlikely that you won't get to SVR24 so many doctors now consider SVR12 blood work 12 weeks after the end of treatment that is unable to detect the virus as Cured!

You have every right to ask for a copy of all of your tests at no charge from your doctor. I would call ahead of time and request they have a copy of your test results at your next visit. Once you have them, you will be able to learn more about what each one means by posting questions here (there are some really educated people who can help) or looking on the internet. You can also write a list of questions to ask your doctor at your next visit. In the beginning when I found out I went to my doctor with a whole list of questions myself:)

I have only known I had Hep C since August of 2014 and I also have 1a.

Don't feel bad that you don't know everything yet, it takes time to process all of this information but it is important for you to understand and have any questions you have answered.

I hope that helped a little and I wasn't too medical in my answers for you.

Mel

anniemybaby · « **Reply #802 on:** January 24, 2015, 06:25:07 pm »

Thanks Mel I didn't know all that stuff I'm gonna read up on all that thanks so much for being so informative I really appreciate that

BattleTheBeast · « **Reply #803 on:** January 24, 2015, 06:40:38 pm »

Hi Annie,

You are welcome, keep asking questions, it's how I learned what I know and that's not much compared to so many others on here.

I can remember a few months ago signing in and reading all the posts and feeling like I was reading a foreign language which I kind of was! It's amazing because I was also in such a brain fog from Hep C that I don't think I even had the capacity to learn what most of it meant until I was weeks into treatment and finally felt the fog lifting!

For me the whole point of being a part of this forum is to help each other with questions and our spirits and our knowledge. Remember all these new medications are really bleeding edge and here is where the real life information can be found, some of the trials were actually no not large and to me it's miraculous how quickly these medications were fast tracked to us with FDA approvals.

Mel

anniemybaby · « **Reply #804 on:** January 24, 2015, 06:45:14 pm »

Joining this forum was the best thing I could've ever done I've learned so much in a short time feeling blessed

lolita · « **Reply #805 on:** January 24, 2015, 07:58:33 pm »

Hello all,

I am a 42 year old female. I contracted Hep C from a blood transfussion when I was only a year old, at that time they didn't test for the virus, so grateful that this treatment is available for us. This is my third week on Harvoni, so far side effects have been: Headache, nausea, fatigue, loose bowels and abdominal cramps. I have a very active life with husband and three kids.
Last week I had my two week blood work and it came viral load undetectable.

Best of luck to all of you.

BattleTheBeast · « **Reply #806 on:** January 24, 2015, 08:02:02 pm »

Hi Lolita!

So glad you found us and that you are already on treatment and undetected! I can only imagine how busy you are with three children and a husband! Hopefully now that you are undetected the sides will start to settle down a bit for you.

Mel

Lukey · « **Reply #807 on:** January 24, 2015, 08:42:21 pm »

Quote from: lolita on January 24, 2015, 07:58:33 pm

Hello all,

I am a 42 year old female. I contracted Hep C from a blood transfussion when I was only a year old, at that time they didn't test for the virus, so grateful that this treatment is available for us. This is my third week on Harvoni, so far side effects have been: Headache, nausea, fatigue, loose bowels and abdominal cramps. I have a very active life with husband and three kids.
Last week I had my two week blood work and it came viral load undetectable.

Best of luck to all of you.

Congrats on that and welcome.

How were your AST & ALT before and after 2 weeks of Harvoni?

Joe

Bob V · « **Reply #808 on:** January 24, 2015, 10:26:04 pm »

Welcome Lolita and congrats on the UD.

Bob V · « **Reply #809 on:** January 24, 2015, 10:30:49 pm »

Annie,
Don't feel bad about "not knowing all this stuff" I'm a registered nurse and I'm learning some "new stuff too"

Bob

sunrise · « **Reply #810 on:** January 24, 2015, 10:31:57 pm »

Welcome Lolita
Sounds like you are a real early responder. That's a great and combined with your health and age you will probably clear the virus well. Best wishes....Sunrise

Long_Haul · « **Reply #811 on:** January 25, 2015, 10:13:19 am »

Welcome Lolita, and WOOOOO HOO congratulations on being undetected so early. The side effects tend to reduce and mostly resolve as you continue TX, so don't worry it gets better. If you haven't read it in the forum before, it is recommended that you drink as much water as you can to help keep the sides to a minimum. A good rule of thumb is to take your weight, divide it in half and that is the number of ounces you should drink. That works for most people.

Good luck and there is a lot of support here should you need it.

AL

anniemybaby · « **Reply #812 on:** January 25, 2015, 05:00:43 pm »

My mouth pain is basically gone with the mouth rinse I have some nausea today I'm on my 2nd wk of harvoni trying to do the whole lots of water but ugh I'm not a big water drinker I work all day in a nursing home not much time to stop n drink water when I get home I try to push to drink as much as I can but I gotta wake up at 4am for work n can't b running to bathroom every hour

Lynn K · « **Reply #813 on:** January 25, 2015, 05:13:06 pm »

Annie

Just wanted to share I am very bad at drinking water are any other fluids really I at a guess would say I drink 3 glasses a day between everything milk, juice, and water. And this is an improvement for me. But in the water and proper eating areas I am a poster child for all the wrong stuff so I would recommend not to follow my example.

One does what one can

Katie · « **Reply #814 on:** January 25, 2015, 05:18:27 pm »

Good news Annie! Hydrating yourself is important so maybe drink a full glass or two first thing in the morning and on your lunch break so you aren't "floating" when you go to bed. Do you have the time to eat small amounts of food throughout the day? That might help the nausea and I have seen that recommended.

I basically wasn't drinking any water, or hardly any other liquids during the winter months and have noticed many improvements from hydration since I started with this treatment. I am definitely going to keep it up. I find now I actually crave the water when I fall behind, like when I go to town shopping and am gone for a few hours. so do the best you can. You could add a squeeze of lemon to it if that would help.

Yesterday afternoon I got a bit light headed and shaky feeling and then realized all I had to eat that day was a grapefruit and a piece of toast. I needed some protein so took a handful of nuts and got to making an early dinner. I sometimes just forget to eat, but unfortunately I always make up for it in the evening.

Take care and the weeks will fly by. Here's hoping your improvement continues!

Katie

Sweetie1 · « **Reply #815 on:** January 25, 2015, 06:58:43 pm »

Hi, I was wondering if anyone else is getting chills, low fever and night sweats on Harvoni? I have 10 days to go out of 3 mths. Undectable at 4 weeks. Keep thinking maybe I am coming down with something but no other symptoms except joint pain. Thanks so much!

anniemybaby · « **Reply #816 on:** January 25, 2015, 07:51:21 pm »

Thanks Lynn yea I'm bad with water n good diets but I'm at least trying on the water thing as far as eating properly not gonna happen not with my lifestyle hahaha I've had a crazy 2014 first had a lumpectomy on breast then a hysterectomy then found out about hep c so 2015 best b my year lol thanks Katie I definetly will do lemon water

Katie · « **Reply #817 on:** January 25, 2015, 08:30:45 pm »

Hi Sweetie,

I haven't heard about night sweats as a side effect but everyone is different. I know I keep saying being dehydrated can cause lots of things that are really subtle and hope you are keeping hydrated. I contribute much of my improvement to that as I didn't do a good job at drinking water, especially in cool or cold weather. Since your liver is working and you have drugs in your system, water helps flush all the toxins out, and that's important for so many things, such as your digestive system, your sinuses, two of which have improved greatly with me. Just my opinion, but many others have found that water helps with problematic side effects. If you haven't tried drinking at least 2 quarts of water a day, you might want to give it a go! I take my pill a couple hours before bedtime and am sleeping better than I have in years so I am unable to comment on your daytime drowsiness.

Good luck to you with your end of treatment! I start my third and final bottle this Tuesday and can't believe how fast the time has gone by. Feel better!

Katie

Katie · « **Reply #818 on:** January 25, 2015, 08:36:40 pm »

Wow Annie...you really have had a rough 2014! Medical issues really interfere with your life and I am proud of you for working so hard in an important area and reaching out to get through this. Just keep your spirits up and do the best you can at taking good care of yourself. Your liver is busy removing toxins from your system with the help of Harvoni so any help you can give it is beneficial.

Take care and good thoughts sent your way!

Katie

uriah · « **Reply #819 on:** January 25, 2015, 11:05:02 pm »

Started takingHavoni two days ago first day taking it I started getting bad headaches so I started drinking alot of water headaches went away. I dont know if this will help anyone that is taking this medication but it help me. It has help for two days now.

mario555 · « **Reply #820 on:** January 26, 2015, 08:19:28 am »

Welcome to the new miracle treatment Uriah. You are right to take in lots of water at the beginning. There is some kind of "flushing" that happens and you need water to make it happen! The water requirement will fade somewhat as weeks go by... (and the headaches too).
Here the group advocates 1 quart per 100 pounds. I have a little different recipe with 1/4 of the water to be replaced with Gatorade so as not to deplete my salts and electrolytes! Try what works best for you! Good luck with the treatment!

julio · « **Reply #821 on:** January 26, 2015, 02:44:24 pm »

Hi Everyone, I just wanted to introduce myself. I am a 57 year old male and I believe I contracted this virus in November 1983. I went hepatitis acute approximately 4-6 weeks after exposure, I suffered Jaundice, lack of appetite, fatigue nausea etc.
Fast Fwd.
We have been monitoring the liver and viral load through biopsies than later on a yearly ultrasound. The peg-combo was so debilitating that I would have had to taken leave from my career without pay because of the physical demands and geographic isolation of my job at sea so we decided to wait until either my liver started going fibrous or a miracle drug was approved by FDA with minimal side effects. Well it appears the miracle is here.
I am treatment Naive
Viral load is 650K to 1.2 million depending on the year but for the last c couple of years it has not gone above a million.
I have Genotype 1
I started on Harvoni 23 January so I have taken it only 4 or 5 days.
I am hydrating, drinking about 8 bottles of water daily. I have not had any side effects yet. I did feel a weird headache last night on the sides of my head but went to sleep early. I am taking it in the morning after a light breakfast and washing down the pill with a bottle of water. I am afraid to even dring hot tea withing 30 minutes because I want this medication to work and don't want to leave anything in doubt.
Evidently my liver was showing fibrous because they can tell from blood tests? I have been approved for 90 days and to be frank I have not been feeling great the last few years but that could be because I am now 57. I have fatigue at times and headaches and I am just so happy to have this drug.
I will keep everyone posted on my progress and let you know how my viral load is at 4 weeks. Keeping optimistic and always grateful for a chance to be healed of this burden.

Long_Haul · « **Reply #822 on:** January 26, 2015, 03:00:15 pm »

Welcome to the forum Julio. It sounds like you have been given some good advice regarding treatment. With such low viral load, you should make it to Sustained Viral Response(SVR). Harvoni in trials was over 95% effective at attaining SVR in patients. Drinking the water is a key in making it with minimal side effects. I am in my fourth week and I get an occasional headache. Having done 3 Interferon based therapies with Ribavirin, I say you made a great choice not to go that route. You will find a lot of good information on the site and the great support here is invaluable. Feel free to speak up if you need an answer as there are no "stupid" questions. We are all here for the same reason.

Best of luck in your treatment and keep us informed of your progress if you can,

AL

BattleTheBeast · « **Reply #823 on:** January 26, 2015, 03:11:37 pm »

Hello Julio!

Glad you found us and welcome. Thank you for sharing your story and like Al said you are on your way to a new life.

You will not be blaming your age on how you are feeling very soon. I think many of us blamed our tiredness and aches on age when it was Hep C all along. I am many weeks into my TX and feel like 10 years have been given back. I can't wait until you tell us how great you feel and that you are Undetected!

Hang in there and post away!

Mel

kate0b1 · « **Reply #824 on:** January 26, 2015, 05:16:03 pm »

welcome julio, it's nice/not to have so many travelers with us on this journey. There is a lot of great people here and a ton of great information.

kate

Bob V · « **Reply #825 on:** January 26, 2015, 09:54:08 pm »

Hi Julio, welcome.

anniemybaby · « **Reply #826 on:** January 27, 2015, 08:35:34 am »

Been on harvoni 9 days now n today when I got up I couldn't function felt very very tired I had to call into work n use n FMLA day I'm still feel very tired which is odd cause I was fine before

BattleTheBeast · « **Reply #827 on:** January 27, 2015, 08:55:02 am »

Quote from: anniemybaby@ymail.com on January 27, 2015, 08:35:34 am

Been on harvoni 9 days now n today when I got up I couldn't function felt very very tired I had to call into work n use n FMLA day I'm still feel very tired which is odd cause I was fine before

Annie,

Take that as a good sign! That means the meds are working and kicking the crap out of the virus, it usually happens somewhere between 1-3 weeks after you start. I had a really high viral load with cirrhosis and was pretty sick when I started. I really hit a wall about week 2 and felt like I couldn't get out of bed for a week, My viral load went from over 8.3 Million down to <15 at my week 4 blood test. That's serious work that medication is doing!!!

No worries, you will start to feel way better very soon!

Mel

julio · « **Reply #828 on:** January 27, 2015, 09:31:21 am »

Thank you for the warm welcome it is much appreciated since this HCV has been a weight on me for years. I have not been open about it and have felt stigmatized because of the cause of exposure which wAs a lifetime past.
I am o oh on day 5 feeling mild heads headAches ocasionaly but I am drinking 8 liters of bottled water a day.
I always worry that if I am not feeling very adverse that the medication is not effective on me.
I will have to wait for the 4 week test which is going to require patience and faith which at the moment is not one of my stronger virtues.
I am grateful for a chance to put this whole disease in my past.

BattleTheBeast · « **Reply #829 on:** January 27, 2015, 09:40:14 am »

Julio,

We are so glad you are here sharing with us. The more the merrier and we all learn so much from each other! Don't worry because you aren't feeling bad. We all react different to the medications just like we have all reacted different the the actual virus. There's no clear path except for Infected and Undetected and finally one day soon SVR!

You are doing a great job with the water, keep it up!

Patience is something we are all struggling with, we struggle to have the patience to get the medication, then we struggle waiting for it to finally arrive, next is being patient while we wait for that first post starting blood test and on and on... I think the worst one for me is going to be the POST tests, waiting to see if the beast is really gone!

Today to make my liver happy I am on a mission to eat a whole bunch of fresh blueberries. They were on sale so I grabbed a couple of pints and they are supposed to be excellent for our livers! I know mine needs all the help it can get

Have a great day and keep posting!

Mel

anniemybaby · « **Reply #830 on:** January 27, 2015, 10:00:25 am »

Go for my first blood test Thursday since started harvoni feeling nervous

Bob V · « **Reply #831 on:** January 27, 2015, 10:10:25 am »

Been on harvoni 9 days now n today when I got up I couldn't function felt very very tired I had to call into work n use n FMLA day I'm still feel very tired which is odd cause I was fine before
-----------------
Annie
This was how it went with me too, it lasted a few weeks. Now I'm still tired but feeling a little better each day. Today will be dose 51 for me.

Good luck with your labs.

Bob

anniemybaby · « **Reply #832 on:** January 27, 2015, 10:32:36 am »

Thanks Bob I'm so glad I'm not alone before this forum I felt like u was so alone I would tell friends n family wat I'm going through n they gave me some support but really couldn't understand my situation

Amj1951 · « **Reply #833 on:** January 27, 2015, 10:41:57 am »

Quote from: julio on January 27, 2015, 09:31:21 am

I am o oh on day 5 feeling mild heads headAches ocasionaly but I am drinking 8 liters of bottled water a day.
I always worry that if I am not feeling very adverse that the medication is not effective on me.

Julio, you said your drinking 8 liters of water each day? That seems a awful lot of water. Did you mean 8 glasses?

Meredith

anniemybaby · « **Reply #834 on:** January 27, 2015, 12:06:41 pm »

Thanks Mel that makes me feel much better

BattleTheBeast · « **Reply #835 on:** January 27, 2015, 12:19:01 pm »

You are so welcome Annie, we are the Lone Warriors out here, fighting away. It's tough that Hep C has such a bad stigma. It's a battle we are all facing together. It's meant so much to me to have this forum and all these awesome people holding my virtual hand through this.

Seriously, no matter how close you are to someone or try to explain they just don't get it. They try but they think it's like a flu and all of the sudden we are on medication and should feel better. It doesn't always work that way. I have good days and I have bad days and but every month I am starting to have more good than bad, so something is working

Hang in there girl! We are always going to be here for you and each other.

Mel

julio · « **Reply #836 on:** January 27, 2015, 12:24:28 pm »

Quote from: Amj1951 on January 27, 2015, 10:41:57 am

Julio, you said your drinking 8 liters of water each day? That seems a awful lot of water. Did you mean 8 glasses?

Meredith

I m sorry maybe I am mistaken, I drink 8 bottles of water a day each one is ... Maybe 2 pints of 16 oz?

anniemybaby · « **Reply #837 on:** January 27, 2015, 01:07:22 pm »

Mel your an absolute warrior I'm glad I've met you and all the others on this forum n your right as soon as I confide in someone its like I have the plague n I'm a drug addict hep c has such a bad rap that no one listens to your whole story they only hear hep c n that's it I've had a few issues at my job because I work in healthcare of course hr know my situation because my GI Dr gave me n FMLA for a yr so I can take it as I need it

Long_Haul · « **Reply #838 on:** January 27, 2015, 02:33:41 pm »

I actually used to work in a local hospital and had been on three of my previous TX excursions while there up until I retired. I have always been an open advocate for getting those around me to understand HCV and I never experienced much stigma from the people I came in contact with. Maybe it's the culture I was in and my status with the people I worked with. I never was openly treated differently. I think because I always made it a point to help eliminate any prejudice when I ran across it. We had Medical professionals and others that got bad raps when they contracted HCV and those that had negative comments got an education very quickly. I usually asked the detractors what they knew about HCV and almost always learned how much misinformation they had in their heads. It did not take long to convince them they were wrong using logic and some real facts and examples to support the true information. I worked there 16 years and was always given much support from the staff and support people around me when I went through TX. When I had to take time off during INF/Rib/Incivek treatment and got too sick to work, I got a lot of contact at home, cards, phone calls wanting to know how I was doing. We are the best ambassadors for educating people an HCV and I never miss a chance to inform people about how easy it is to get infected if you are not careful.

When I listen to you all share your experiences here, I love this site more. We will make a difference in our lives by being the best advocates we can for our own health care and educating others about their situation. It works and this is a great example.

Thanks to all of you for what you do here, it is priceless!

AL

Katie · « **Reply #839 on:** January 27, 2015, 03:09:05 pm »

I posted this awhile back on a different thread and so thought I would share it again as it is a common story with us and I think it's good to know we all do what we have to do to maintain a somewhat normal life when we have an infectious disease.

Al, Your experience in sharing may have been more positive because you were a health care worker. For those of us who have no idea how we got this monster or those of us that made mistakes in our past might cause the uninformed to draw incorrect conclusions about us personally and about the disease.

Part of my reason to not share was I didn't want to constantly think about it or try and explain something that I couldn't give answers to. HOW, WHERE, WHEN, WHY and what now?

Previous post:

After 9 years of living with Hep C basically alone, I am now feeling OK about talking about it. I am retired (I made it) so no longer worry about my job. It was stressful, as I worked for the government as a research biologist and supervised up to 15 technicians and then there is ALL of the politics, so even though I loved the work, I am glad to no longer have that responsibility, and the last couple years were difficult for me.

I can talk about it because I now have GOOD news about the treatment and I feel I need to educate people to get the word out and help others. You'd be surprised how many health care professionals know nothing about Harvoni, and how many of them are misinformed about Hep C. Since they are at high risk you would think they would get updates. I talked to the phlebotomist at my 4 week blood draw, and she was thrilled to hear about it and asked me to let her know what her results were. Getting that info out is important. As for my friends, I see the shock on their faces when I tell them, and a couple have said they knew something was going on with me, but as soon as I tell them about the treatment I am on, the relief on their faces spoke volumes!

It is difficult thinking of yourself as a biohazard and really, that's how I did feel. I followed the research and just knew they would have a breakthrough. I am delighted it came around before I had serious liver damage and is now available to cure me. My blood won't be poison any longer!!!! It was also surprising how many "friends" I never saw again after they found out I no longer drank (which I wasn't a heavy drinker and actually quit before the diagnosis because of how crappy I felt) but I guess it was their own insecurity. No more invites to their Bar-B-Qs etc, so I guess they weren't worth much.

Genotype 1 is the most common in the US and had low cure rate with previous treatments and bad side effects but that is what Harvoni can now cure. Hearing the diagnosis for Hep C would be much easier to hear now than it was just 2 years ago as the treatment available then was unlikely to cure you. So no matter what your results are, the news is no longer a life sentence. Like my friend told me, what does it matter HOW you got it just move ahead and deal with it. We all have your back and are here for you. Today is my 42nd pill, so I am half way there. The weeks have gone by so fast!

Breathe deep and think positive thoughts. Everything will be OK.

Katie (January 14, 2015)

I am starting my third and final bottle this coming Thursday!

Lynn K · « **Reply #840 on:** January 27, 2015, 03:25:14 pm »

Julio

So I figure you are drinking about 4 quarts of about 4 liters if I figured that correctly. That is a safe amount but few people realize you can drink too much water so the 8 liters made me a bit concerned.

Here is a link from the Mayo Clinic about recommended daily fluid intake for anyone interested

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

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.

Long_Haul · « **Reply #841 on:** January 27, 2015, 04:19:41 pm »

@Katie, you make excellent points and I fully support anyone's decision to remain quiet about their illness. That is a personal choice. I am not saying that I haven't seen the stigma outside of work. I have had the loss of invites form "friends" that weren't. They were just looking for something from me. You can't educate those that don't like to do things without some emotion attached, they don't listen unless you somehow break through that FEAR that they harbor. The "It can't happen to me" attitude is often lost when you get to have a non-emotional conversation with some people. Usually an uphill battle, but sometimes a breakthrough occurs. In my career, I have been a technician, installer, manufacturing engineer, supervisor, manager, mentor and shoulder to lean on. I have met a lot of interesting and great people and some not so good people and one thing I learned is that everyone has a reason for who and what they are. Either way, they have a right to be who they are and I am not the one to judge them. For me I treat people like I want to be treated and am frank about topics I know about and listen when I don't. It has served me well to this point.
I wish I was a health care worker, but I was actually technical support staff, so I worked with everyone including the CEO. I always had a great rapport with those I supported and always tried to make them know their success was important to me and that we(The customer and I) as a team would resolve their issues, so they most always felt respected. They in turn returned that respect when we spoke of other things. I am very grateful for having been able to do that. I honestly do believe I was able to have those discussions at the hospital because people had access to do follow up on medical info we discussed and found what I stated was true. It was a cultural thing that might not work elsewhere.

Here is an example of the culture, when I was about to start my first Int/Riba TX, I sat down with my boss and told him what was about to happen and his response was be here when you can, get your work done on time and make sure I have satisfied customers. He allowed me to nap during the day as needed in an area secluded from view and when I finished the 48 weeks of treatment (5 shots of Interferon a week), I had not missed a day of work related to treatment. I got a great performance review and when I related the fact that I appreciated what he did for me during TX, he said, I forgot you had done that and it was never an issue. The same for the second PEG Int/Riba and again no issues. I guess we all have different opportunities in life and do what we think is best to survive.

Everyone's situation is different and I know I was lucky to be where I was for that part of my life. If it is safe for you to help others, I urge you to do so. Only you can judge that for yourselves. In the meantime, what we share here is invaluable,

AL

Katie · « **Reply #842 on:** January 27, 2015, 04:35:14 pm »

Thanks so much for sharing that Al. I agree and now feel good about sharing information and this forum has been irreplaceable. The few close friends I did share my health issues with constantly told me my fatigue, and my insomnia and my brain fog was due to age. They actually got me believing it but now I know it was the Hepatitis as all of those symptoms have gone away. I feel 10 years younger and have the spunk now, to stand up and educate. That in itself feels good.

I wish you good health and the cure as you have fought this monster for a long time. We are fortunate to have this treatment and each other for support throughout as that keeps the seed of doubt from creeping in.

Time to get moving and take a walk while it isn't raining. Hope all of you North-easterners are safe and warm and if you can, please go out and make some snow angles for me!

Katie

mario555 · « **Reply #843 on:** January 27, 2015, 06:59:26 pm »

Good news for us who are on par for a successful treatment! I had read somewhere about the improvement in our condition after a successful SVR. I found the article and for the ones who love reading tons of complicated medical material, I have included the link below:

http://www.annalsofhepatology.com/revista/numeros/2014/HP144-03-Long%20(changes)%20(F_060614V)_PROTEGIDO.pdf

For the others, it says that after following people for 15 years after a successful treatment with Interferon (there were not that many, believe me....) there was 50% of patient who showed no more fibrosis and 40% who got rid of the cirrhosis after 5 years post SVR. Most had a visible improvement in their general condition with less fatigue being the most noticed improvement.
I was always scared of still being sick after treatment and at increased risk for further health problems. The article shows that at least, the progression stops and for most, a sizeable improvement happens! So, good luck, keep taking your pills and be happy (that we are still alive to see this new treatment!)
Mario

anniemybaby · « **Reply #844 on:** January 27, 2015, 07:05:30 pm »

I've decided to stay home for a couple days I'm just soooooo tired almost to tired to even drive that's my only problem right now I don't believe in energy drinks n not sure I should b drinking them while on treatment

sunrise · « **Reply #845 on:** January 27, 2015, 07:23:53 pm »

Hey Annie
gee I hope you're feeling better soon. You're right energy drinks are no good for you even if you're not on treatment
Maybe a little coffee might help.Coffee actually is good for your liver so they said in some studies.

Katie · « **Reply #846 on:** January 27, 2015, 07:35:13 pm »

Annie, if you are tired, rest. Listen to your body and if at all possible don't push yourself. Your body is working hard to get rid of this. One reason I am feeling so good is I have NO responsibilities so can sleep as long as needed and take it easy if that's what my body needs. I am lucky that way where many here have to continue to work or have children to take care of. I even make my appointment after 10:30 as my mornings are slow and if I rush my day doesn't go well.

Hope you energy level improves.

Katie

Mario: Thank you for that information! I will read the site you posted and the news you shared is great about the liver healing post treatment! I was under the impression cirrhosis sufferers were stuck with it and the problems it caused, so thank you again!

Katie

anniemybaby · « **Reply #847 on:** January 27, 2015, 07:52:32 pm »

Thanks sunrise n Katie n yes I will b resting n I am a coffee person but it seems when I'm real tired I drink a cup of coffee n it just has my heart racing but my body is just blah ugh march 14 is hopefully my last day on treatment unless they opt for the 12 Wk instead of the 8 I guess it all depends on wat my blood work says

BattleTheBeast · « **Reply #848 on:** January 27, 2015, 08:25:29 pm »

Katie,

You sound just like me

Listen to your body! It took me many many years to really understand and do that. I wish I would have listened sooner but happy to have that tiny bit of wisdom these days!!

Annie,

It's a ride, go with it and allow yourself the time to rest, it's ok. Be kind to yourself and know that you are going to beat the beast. It's a little tough right now but it will get better! I love how smart you are being about this!

Mel

anniemybaby · « **Reply #849 on:** January 28, 2015, 04:44:42 am »

Thanks mel

Lynn K · « **Reply #850 on:** January 28, 2015, 06:07:48 am »

Hi Mario

Thanks for the info very informative. I have always figured the damage would stop with SVR and just hoping I am not at the tipping point when I make SVR and go over the cliff anyway. So 50% chance of a reduction in Fibrosis level and retreating from the cliff is the best odds I have heard in years

kate0b1 · « **Reply #851 on:** January 28, 2015, 06:15:03 am »

morning everyone, tomorrow is my 1/2 day, I'm super excited (and wow not that nervous) about being half way done

@al, I see a hepc ambassador in our future, great post

kate

sunrise · « **Reply #852 on:** January 28, 2015, 06:34:44 am »

That's great news Katie
It seems that these new treatments fly by once you get started. Im 5 weeks post tx. already! You will be amazed as your tx. will be done and over with in no time. On the road to being cured Yeah! Have a great day.
Everyone have a great day as well. Blessings Sunrise

sunrise · « **Reply #853 on:** January 28, 2015, 06:35:43 am »

I meant Kate

Mugwump · « **Reply #854 on:** January 28, 2015, 07:13:17 am »

Quote from: anniemybaby@ymail.com on January 27, 2015, 07:52:32 pm

Thanks sunrise n Katie n yes I will b resting n I am a coffee person but it seems when I'm real tired I drink a cup of coffee n it just has my heart racing but my body is just blah ugh march 14 is hopefully my last day on treatment unless they opt for the 12 Wk instead of the 8 I guess it all depends on wat my blood work says

I have found that strong coffee now makes me wired like a kid on red bull. Try half caf it works for me. If you read the studies the SVR rates are better with 12 TX weeks regardless 8 on doctors discretion and only if absolutely no liver problems are evident and the VL is low at start of treatment. So I would not take the chance given the choice.

The SVR for those who have fairly severe cirrhosis indicate that there were relapses after 12 weeks TX. So unfortunately for me the TX option of 24 weeks is necessary.

My nurse indicated that if I do have a relapse or do not clear in 12 or 24 there are new treatment options coming which should be approved within 3 months. I will have a 12 week VL done but the kicker is the 6 month post treatment and between that what happens on my regular liver tests post TX. I feel like a pin cushion....LOL

I know what you mean about being tired though and discussed this aspect today with Haley my nurse. One thought is that the level of waste coming from the liver as the treatment progresses to the point of finally allowing the liver to create new cells is greater in those with cirrhosis and the efficiency of the conversion of glucose is not as good as those on the treatment who do not have cirrhosis at all.

As the liver heals we should start feeling less tired as Harvoni itself should not cause one to experience weakness the way interferon does and also does not effect the production of blood cells the way Ribaviron does.

Here is hoping that we all do the happy dance at the end of 12 weeks and the final weeks of TX for those with minor liver damage turn out to be like the first 4 where the extra energy was evident.

I will post some happy dance music in the form of an early baroque leg busting 2 over 3 step dance and gigue from the Canary Islands as soon as my energy level is back up again. You have my word on that! Heck I might even post the old saw Kemp's Gigue but at a ripping tempo that even Elizabeth the First would trip over. LOL

Eric

mario555 · « **Reply #855 on:** January 28, 2015, 09:14:19 am »

Hello to all. I am now 11 weeks into a 24 weeks treatment. Everything appeared to go fine with the treatment and all side effects were subdued until yesterday!
Yesterday just before taking my pill I had an attack of ringing in my ear. I had had the problem during the first few weeks and it had abated to a 1-2 level. Yesterday it went up to a 9 for no apparent reason. My heart rate was above 80 at rest and I 'm sure my blood pressure was sky high but had nothing to check it with. What a freakish experience!
Another problem I have is a high level of panic attacks when I think of something stressful. Sometimes I' m calm, at rest and then I think of something related to work and in 2 seconds my anxiety goes to a 8-9 level.
Both those problems last 45 minutes before abating.
Anybody had those problems happening after being 'on the pill' for many weeks?

sunrise · « **Reply #856 on:** January 28, 2015, 09:41:02 am »

Good morning Mario
I took a 12 week course of Sovaldi with Olysio, but to be honest with you I had some of the similar side effects. My anxiety level went through the roof, and my blood pressure went up. He prescibed clonapin, and that seemed to help some.I've always had low blood pressure, but it went high for me. You should tell your doc about it. I didn't get ear ringing but my doctor did not seemed concerned. Good luck with that ...Blessings Sunrise

JoeK9999 · « **Reply #857 on:** January 28, 2015, 10:21:13 am »

Mario,
I finished 12 weeks 13 days ago.
The last 2 weeks I had a lot of dizziness, developed an itchy rash on my right ankle.
Swollen groin on right side which I thought was a lymph node.
The dizziness was gone wihtin 2-3 days of finishing the meds, but blood pressure is still high.

I went to my general internist doctor yesterday. Blood pressure still high.
It was always normal around 120/80 or lower before Harvoni. He said the swollen groin is fatty tissue mass (lipoma) and not my lymph nodes. I am getting an ultrasound for it today if I can get it scheduled. He said lower my salt intake and see if the BP goes down.

moma · « **Reply #858 on:** January 28, 2015, 03:51:51 pm »

Hello this is my first time communicating with a group on line. I feel a little apprehensive. This my 12th day on Harvoni.
I have had hep c since 1971. During a c section that turned into a hysterectomy I was given a transfusion of contaminated blood. It was all kept pretty much in check until 2001 when I had my 1st heart attack. My liver counts went sky high. I went on Inter/ribro treatment for 2 months and then couldn't take the horrific side affects.
A year after that-another heart attack. I lost my job and had to move because of health. It has been a very long road to feel somewhat normal again. The thought of Harvoni, another medicine, going into my body has scared me to no end. Anxiety has now turned into depression. Does anyone else feel like this? I feel exhausted mentally and physically. And don't have much faith in any of this. Normally I'm a positive person, the glass is always half full. Has Harvoni messed with anyone's emotions?
Thanks for letting me get this out. MoMa (my grandsons name for me)

Katie · « **Reply #859 on:** January 28, 2015, 04:13:03 pm »

Hi Moma and welcome!

Fear and bad experiences will cause depression and any new medication will have an impact. This forum will be so beneficial for you so read previous posts and you will see you are not alone.

I am a worker. I love working on my house and for the past 4 years, have been remodeling one room at a time, always moving forward, no matter how crappy I felt from Hep C. I chose not to try the old treatment do to the low cure rate and bad side effects and am grateful I waited for Harvoni. My treatment has been easy, in fact I am feeling better than I have in over a decade. One thing I have noticed is my motivation is GONE. I just can't get up and at it and could see where depression could kick in, however my undone projects or not so clean house just doesn't bother me. I have a "what the heck attitude", and that is totally not me! I even cancelled Christmas as I just didn't want to be bothered with it. So weird. So I have to say, the medication is causing this personality change. Everyone reacts differently and do whatever you can to pull yourself out of depression so you don't spiral down.

This treatment is a miracle and you will see improvements as your liver starts detoxifying your system and doing it's job. We are so blessed that this breakthrough came in time to help us and we will beat this monster! Many taking this treatment, including myself, find that drinking lots of water (1/2 gallon/day) to help flush the toxins, really can eliminate side effects or at least reduces them.

With your medical background, I would keep your doctor informed of any changes physically and mentally to make sure there isn't drug interactions.

You will be amazed at how being part of this group gives you support and lots of information. I hope it helps you through this as it has me!

Know you aren't alone!

Katie

sunrise · « **Reply #860 on:** January 28, 2015, 04:18:20 pm »

Hi moma
Welcome and don't be scared. I took solvadi olysio which is pretty much the same hing except for the ledaspivir wheich disables a different chain of the RNA than the olysio. Saying that, during treatment i got very intense anxiety. I wound up taking clonapin for awhile , but was able t stop right after. It will work and help you get better, so buck up little camper. These folks here will help you get thru treatment. I am now 5 weeks out and am still undetected! My doc thinks I am cures. So stay positive and rest when you need. ...Blessings Sunrise

anniemybaby · « **Reply #861 on:** January 28, 2015, 04:41:22 pm »

Hi mama I'm also pretty new to the forum I'm on my 2nd wk of harvoni the 1st week was easy my 2nd wk is a bit harder very low energy n very tired I pretty much rely on this forum everyone has helped me n gave me hope there is light at the end of the tunnel for all of us hang in there

Mugwump · « **Reply #862 on:** January 28, 2015, 06:55:55 pm »

Hello moma!
It is really important to take your mind off the disease. Depression feeds on itself and leads to misconceptions and fear. I suppose one would have to be a human equivalent of the Rock of Gibraltar to not feel depression being infected with this terrible disease.

Do something nice for yourself or others and do it without thinking, find time every day smile at someone or something and life becomes easier to bear. One can easily become depressed watching CNN or the daily news and become emotional over little things that should not cause the mind to worry.

Some days even before treatment I felt like throwing a shoe at the TV and regularly told telephone solicitors to go some where not very nice. I had to buy my wife some long stemmed red roses 5 weeks ago because I know I almost drove her to tears with my obsession and manic behaviour. However since then my mind has cleared and I am not flying up to the stars or dropping down into hell like I was at first.

There is no doubt that just thinking constantly about the disease can become the cause serious depression so one needs to step back and gain a new perspective on what is going on.

Yes even having to be on this med is depressing enough in itself, but I do not believe that Harvoni in itself is causing depression. All here are encouraged by the fact that we are finally starting see those who failed other treatments actually respond and become SVR virus free for the first time.

Do not concern yourself if your first viral load assay at week 4 does not show you to be SVR. Mine did not but did show a count less than 15 so by now I am certain that my reading will be SVR. It is common for those with long term infection like both of us to take a little while longer to clear the virus so do not be scared.

Here is a huge cyber hug and I am certain the whole gang here is sending you the same thing.

SMOOOCH
Eric

BattleTheBeast · « **Reply #863 on:** January 28, 2015, 08:44:44 pm »

I am sitting here laughing that Katie cancelled Christmas and I got a $15.00 tree 4' fake crappy tree because the thought of pulling out the big beautiful one and decorating it overwhelmed me. I would have gone without but it would have made my Grandson sad, so it's still sitting right in front of me, I like the pretty lights and well I just don't care if it's there until the lights burn out.

Oh and the menorah is on the bookcase right next to the tree.

Maybe the end of this year we will celebrate, not sure but maybe....

@Moma - glad you jumped in and joined us. I think these medications are much harder on women than men and it's a journey to get to the end of this battle. My first 8-9 weeks I was a rashed filled basket case with blurred vision and that was the easy part, add in Insomnia and a crappy attitude and you would have ME! It's a process and this beast has been floating around for a while inside of us. I was pretty sick when I started the treatment and it's not a cold that's going to get better in a week. I have cirrhosis and it was no ez path to find my grateful butt here night and night watching the fog lift. Its going to get better, it really will!

Mel

badbradley · « **Reply #864 on:** January 28, 2015, 09:05:40 pm »

Quote from: Katie on January 28, 2015, 04:13:03 pm

I even cancelled Christmas as I just didn't want to be bothered with it.

You ROCK Katie!!!!
Brad

Katie · « **Reply #865 on:** January 28, 2015, 09:32:52 pm »

Mario...Guy,that would be scary. Please get in to have your blood pressure checked if this continues! I think High BP can cause ringing in your ears and may even have something to do with panic attacks, so it's nothing to fool around with. Did you perhaps have too much caffeine? I am stuck with decaf and have been for years but one of the symptoms I had from caffeine was a racing heart and a shaky, confused feeling. I've had tinnitus for a long time but it seems to have lightened up a bit with the treatment. I got it from a year long sinus infection, so figure I am stuck with it. $:-\$

Hope you are feeling better.

Eric, maybe you should try decaf too. I serve it to friends and they can't even tell the difference!

Brad: Thanks for noticing! HA! Last Christmas I must have baked over 30 dozen cookies in addition to fudge and many friends were disappointed with my lack of holiday cheer!

Mel: I love that you are still enjoying the lights. Let them SHINE sister!

((((Hugs)))) to all of you.

Katie

Mugwump · « **Reply #866 on:** January 29, 2015, 03:40:12 am »

Here is a musical hug for all those going through treatment or considering the option. It is a little better recording of Torija or "the sleeping infant" recorded with a little better gear.
https://drive.google.com/file/d/0Bxiw8Fciz7N7cVJ2OXZUUDcxOUU/view?usp=sharing

If your browser does not play the file correctly, Firefox seems to choke on it, then the file has permissions for download but you have to mouse up to the top of the page to find the download option. It took me quite a while figuring out how to create and upload to google drive but fortunately you can and it will except high bit rate mp3 files.

Hopefully my recordings will get better as I get used to the discipline of recording and ease up a bit and start to cut loose and play more freely like I do performing in a coffee house or on a gig.

I am finding keeping the mind sharp doing new things that you have always wanted to do while on treatment is really helping to kick the blues. The side effects of this drug really are minor if you let yourself steal away into something else to pass the time.

My BP is still up but it seems to fluctuate down to normal and my heart rate is actually down from what is was pre treatment. The "brain fog" is most certainly clearing and the moments of being in a haze (call it an Alzheimer interlude) have completely dissipated.

So moma hang in there, chances are that the fear and uncertainty which are causing doubt are a result of what many here call "brain fog" and it does tend to begin to clear after about 3 weeks of pills. There is some speculation that the flood of dead virus particles in the blood stream is somehow effecting normal synaptic activity.

I have experienced a slowing of the rate at which my eyes focus and as a result more blurred vision than pre treatment.

It might be a good idea to have an eye exam post treatment to determine if there is any significant changes to vision.

BUT and I emphasize this; the chance to clear the virus once and for all is worth the risk involved without a doubt. Even if I need new glasses at the end of this treatment that is small potatoes compared to needing a liver transplant!

eric

kate0b1 · « **Reply #867 on:** January 29, 2015, 06:22:33 am »

eric, what a great thing to listen to first thing in the am.
@katie and mel, I'm loving the posts about christmas, one of my strings of lights went out and i was ok with it (it looked rather crazy but i was like oh well).

kate

Amj1951 · « **Reply #868 on:** January 29, 2015, 09:10:30 am »

Hi ERIC! Another beautiful piece of music. thank you

I hope you saw my thumbs up on your oriental recipe. Was a huge hit last weekend.

We are heading out (well my friends already left) but we are going Fly Fishing for a few days in Broken Bow. Every time I think of fishing now I think of your tag line under your name : )

I need to get busy packing the jeep. I am in charge of the food and I've been procrastinating on loading up. Hate that part.. well actually I hate unpacking more I think.

I've been trying to decide do I take all my pills with me? Just got my 2nd bottle. Leave them here? What if the house burns down.. what If the cabin gets robbed. Cant take them on the water. OMG can you imagine them falling in.......... decisions.........

Katie I love your post on Canceling Christmas!! Its so commercial now. Sometimes it feels like we ought to just sent a note out to meet at the mall with a credit card. So many have lost the REAL meaning behind it... but on the plus side.. its a whole year away! : )

MOMA... I hope you start to feel better. I agree with ERIC.. do one thing for YOU : )

I have to get a move on. Have a great rest of the week everyone. Fingers crossed I catch the Big One Martha!! (Actually I'd settle for a little bitty one : ) ha!

Meredith

PS.. Hi miss Kate : )

anniemybaby · « **Reply #869 on:** January 29, 2015, 09:29:56 am »

Going in for my first blood work today

Bob V · « **Reply #870 on:** January 29, 2015, 11:32:37 am »

Good luck Annie

anniemybaby · « **Reply #871 on:** January 29, 2015, 12:16:41 pm »

Thanks Bob I got a question none of my paperwork says anything about fasting before test n I'm unable to get a hold if my GI Dr do I need to fast prior to this test I'm planning on going around 2pm today and I've already eatn today

anniemybaby · « **Reply #872 on:** January 29, 2015, 12:25:41 pm »

Hi Mario I've noticed you were online when ya go in for blood work do I need to fast for that

HHburme · « **Reply #873 on:** January 29, 2015, 12:30:06 pm »

no need to fast for viral count.

anniemybaby · « **Reply #874 on:** January 29, 2015, 12:45:22 pm »

Thankyou

Katie · « **Reply #875 on:** January 29, 2015, 01:14:44 pm »

Quote from: Mugwump on January 29, 2015, 03:40:12 am

Here is a musical hug for all those going through treatment or considering the option. It is a little better recording of Torija or "the sleeping infant" recorded with a little better gear.
https://drive.google.com/file/d/0Bxiw8Fciz7N7cVJ2OXZUUDcxOUU/view?usp=sharing

Eric that is LOVELY and I am impressed with your sensitivity and talent! The rest of us should be so lucky to have that tender creativity within us to set our minds at ease. I loved it and thanks for sharing.

Not only do you cook, but you can furnish the dinner music too.

Keep at it and glad you are feeling better. Keep an eye on that BP. This music has to help it.

Katie

moma · « **Reply #876 on:** January 29, 2015, 04:57:51 pm »

Thank you all for your suggestions and kind words. In the 43 years living with Hep C I got to a point of feeling the virus and I were co-partners sharing a body. It was a way to live with a situation a person can do nothing about. Up until the cirrhosis was detected I had felt pretty lucky if you leave out jaundice and alopesia. Maybe the fear is not remembering what it is like to be normal. All my adult life has been being hyper-aware of my blood coming into contact with anyone. Checking for years looking to see whatever comes out is too dark or too light! Checking the whites of eyes, the ridges of nails. Hep C has done its share of screwing with this body. The anxiousness might be the thought that this can't possibly work and I'll pay some karmic price to this virus for trying to get rid of it. Like a heart attack and alopesia after Interferon treatment. These are my thoughts today!
As suggested "Do one thing for yourself"- I called and scheduled a acupuncture appointment every week until the end of treatment.
Thanks for letting me write these thoughts out. It helps.
MoMa

anniemybaby · « **Reply #877 on:** January 29, 2015, 05:13:06 pm »

Moma those words you wrote touched my soul I've often checked the whites of my eyes n can't tell you how many times I've said to husband omg does my skin look yellow when I looked in the mirror that's wat I saw my husbands like there's nothing wrong with your skin but I would c it thank you for writing such strong words it really touched me

anniemybaby · « **Reply #878 on:** January 29, 2015, 05:18:55 pm »

I got my first blood work today I sat in the chair the phlabotomist said oh your hep c positive the way she said it my heart fell to my feet she seemed almost scared to touch me I just want this over with I'm tired of being infected I'm tired of being scared to be around anyone what if I cut my finger what if I have a nose bleed I just want this over with today I feel overwhelmed

Katie · « **Reply #879 on:** January 29, 2015, 05:36:55 pm »

Oh Annie, I know just how you feel as I had anxiety over the same things when I was first diagnosed. So, if you cut your finger, you put a band aid over it. If you have a nosebleed you tilt your head back with a Kleenex until it stops and dispose of the tissue. You aren't going to infect anyone unless there is blood to blood contact such as blood to an open sore, or a needle puncture, or sharing personal hygiene items if you cut yourself with those. It isn't that easy to infect someone. Health care workers have the biggest risk such as EMTs, Dentists, and yes medical lab technicians. I actually had my blood drawn and the phlebotomy technician told me just touching my skin could be infectious....so some of them are really misinformed. That is worrisome in itself.

I have spent the past 9+ years feeling like I was a bio-hazard but now we are on the road to recovery and we need to feel good about that. We are being responsible and we are not a danger to anyone. We are good and we are going to be OK. We need to celebrate that fact and heck with those that should know better and don't.

You are going to be FINE!

Katie

anniemybaby · « **Reply #880 on:** January 29, 2015, 05:43:03 pm »

Katie i absolutely would b lost without you

hope4cure · « **Reply #881 on:** January 29, 2015, 05:44:25 pm »

Finished my first bottle today (14 days) and I don't seem to be getting as tired as I did the first week, but I still do feel sluggish about 6 or so hours after I take it. That is the only thing I notice different since starting the medication.

Wilson · « **Reply #882 on:** January 29, 2015, 08:47:49 pm »

I am doing first test at 15 days which is tomorrow no issues what so ever. Read the post about being treated poorly by laboratory or nursing staff. I have personally told staff with an ignorant attitude to stick it in their ear. I have blood work and a pint of blood taken every three weeks or so, every year for years because I have hemocromitosis. (Iron overload genetic disorder). I've had a nurse treat me rudely once. I immediately told her to get out. I had a doctor last year - once tell me that it was my fault for getting hepc. I lite into him and filed a formal complaint with the attending physician at the Unversity hospital. He regretted that. I was assigned a wonderful young lady and she has been awesome. The other jerk.Had to apoligize to me. Annie, you don't let anyone treat you disrespectfully. If you have this happen again, post the location, staff members name and the phone number and we can all call them and complain. Don't ever let them get you down. Sister you deserve better.

Katie · « **Reply #883 on:** January 29, 2015, 09:19:19 pm »

Right On Wilson. You got it right! Thank you for that forceful statement because we don't deserve being treated badly when we are being responsible and going through treatment.

I have had some strong discussions when they go right from Hep C to insinuating drugs. I didn't bother with the phlebotomy technician, as I was first of all shocked and secondly felt he wasn't worth my energy at the time. If that happened now, they would get and earful as I am much more educated myself and more proactive. At that time I was in a state of despair and shock about the diagnosis. We all grow and become better at sticking up for ourselves as time goes on.

Good luck with your test and here is to destroying this alien monster virus and go on to getting our life back.

Katie

BattleTheBeast · « **Reply #884 on:** January 29, 2015, 09:39:06 pm »

Way to go Wilson and I would absolutely pick up the phone and lodge a complaint for you as well.
You are a sweet precious person who has a virus and you deserve absolute respect, no one has a right to make you feel horrible especially a phlebotomist who is trained to take blood, how dare she.

Today when I had my blood drawn at the Labcorp next to my doctor's office my normal guy Werner was an absolute Gem, he has never once missed my vein, he always listens to me and he even had one of the other techs practice on him so he would know how it felt to draw my blood where he does (my wrist area). He wanted to make sure that he did it as painfree as possible and so he had them try it out on him for my next visit. I have hidden veins he says so he has to use a really small device and hit veins that easily roll. He tells me all about how he does, talks calmly to me the entire time, always smiles and is a genuinely nice person who is well trained in his job. I have even written to LabCorp to say how amazing he is.

It's such a stigma to have Hep C, I know I get it but we have each other. One day I hope to help make people understand that this could easily happen to them. That they could be walking around with it and not even know. You know that old saying "People in glass houses shouldn't throw stones" couldn't be more applicable with a hidden disease like Hep C.

We all have your back girl, just holler and we will be there to help you!

Hey Katie, SMOOCH Sister!

Mel

anniemybaby · « **Reply #885 on:** January 29, 2015, 10:23:16 pm »

I was wandering do I need to call n order my 2nd bottle of harvoni or will the pharmacy call me

Long_Haul · « **Reply #886 on:** January 29, 2015, 10:29:00 pm »

HiAnnie, I have Express Scripts/Accedo, they call me to tell me that I have prescriptions to order and give me another number to call.

Who is the pharmacy, I am sure someone on the site probably has the same as you.

I call back to mine and place my order and schedule the delivery, usually arounf a week before my last Harvoni.

Hope that helps,

AL

Katie · « **Reply #887 on:** January 29, 2015, 11:05:07 pm »

I pick mine up at my local pharmacy and always call it in to them a week before as per the instructions from the pharmacist. I guess it depends on how your medication is distributed, but I would definitely call to make sure.

Hope you are feeling better Annie. This whole process is overwhelming and having each other is so beneficial!

Katie

anniemybaby · « **Reply #888 on:** January 29, 2015, 11:11:17 pm »

Thank you my meds come ups there are no pharmacy's in my area that carry harvoni

Katie · « **Reply #889 on:** January 29, 2015, 11:16:03 pm »

Who lined the meds up for you the first time? I would think they would let you know what you have to do as they take awhile to get. Hopefully you have a number to call.

It's always something to deal with and by the time we have it down pat we'll be done and cured. That's how life seems to be!

Katie

Jmayer1969 · « **Reply #890 on:** January 30, 2015, 03:10:36 am »

I took my second dose of Harvoni today toward my 12 week treatment. Not feeling any different other than backache. I was searching for food plan while on this treatment. Any pointers?
Thanks
Jan in Jax,FL

Lynn K · « **Reply #891 on:** January 30, 2015, 03:42:50 am »

Hi Annie

Usually the bottle has the number to call for refills with your prescription number on the label along with your name

Mugwump · « **Reply #892 on:** January 30, 2015, 03:43:03 am »

Quote from: Jmayer1969 on January 30, 2015, 03:10:36 am

I took my second dose of Harvoni today toward my 12 week treatment. Not feeling any different other than backache. I was searching for food plan while on this treatment. Any pointers?
Thanks
Jan in Jax,FL

No special diet is called for according to the literature, other than making sure you are well hydrated. I have found that if I do not eat within 6 hours of taking the med then there is a tendency to feel queezy in the gut. That is about it.

There is a strong recommendation directly from Gilead to avoid the use of antacids within 4 hours before and after taking the pill as this can cause the ingredients in Harvoni to bond to the antacid and not be metabolized in the liver essentially wasting the med.

To my way of thinking try to avoid large quantities of saturated fats that wind up causing the liver to work overtime and do throw the blood balance out of wack. That being said the occasional Big Mick or Slurpie is not going to make much of a difference.

Watch the movie Supersize Me, http://en.wikipedia.org/wiki/Super_Size_Me it is a good laugh but does have some actual clinical facts about how terrible the over consumption of large quantities of sugar, fats and refined carbohydrates can and does quickly effect how well your liver can do the job it was meant to do.

In short how well the liver metabolizes Harvoni is really important. A normal balanced diet seems to be the best call regardless of whether or not you tend to attack vegetables or critters or a combo of both. Of course if you are an insectivore and have a penchant for something like chocolate coated ants or meal worms then you are on your own!

Kick the virus to hell where it belongs and best wishes

Eric

Lynn K · « **Reply #893 on:** January 30, 2015, 03:56:23 am »

Just to add to avoid use of antacids within 4 hours

If you take a PPI like Prilosec or Nexium the rule is at the same time as Harvoni on an empty stomach.

If you take famotidine i.e. Pepcid or other histamine-2 blockers you take those at the same time as Harvoni and 12 hours after Harvoni at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.

smarsman · « **Reply #894 on:** January 30, 2015, 08:32:53 am »

I am on day 5 and other than some extremely mild queasiness which I am not even sure is attributable to the Harvoni, I feel fine with one exception which I have not read about: I woke up yesterday morning and experienced some imbalance walking to the bathroom. It dissipated over a 30-45 minute time frame. And this morning when I woke up although it was a different quality and intensity, there was some imbalance and slight dizziness.

Has anyone heard about a lack of balance associated with Harvoni?

anniemybaby · « **Reply #895 on:** January 30, 2015, 12:48:25 pm »

Hi smarsman I've been experiencing a lot of queasiness as for the dizzy spells I feel somewhat that way but I'm extremely tired and fatigued I'm pretty new to the whole hepatitis thing and don't know near as what other members know good luck

moma · « **Reply #896 on:** January 30, 2015, 08:54:34 pm »

Total dizziness. This is day 14 on Harvoni. Feeling a little itchy too. Mostly just tired.
Last night was one of those insomnia times. Like I've said before, I'm not sure if it's the medicine or the virus. I have had these low periods of side effects for a couple of decades just from Hep C! It still doesn't seem possible we can be ridding our bodies of this virus and not having worse side effects!? (not complaining) Especially compared to Interferon, well there is no comparison!
"Do one thing a day" Watched a Netflick movie on my laptop, laying in bed!
Annie your reply was so sweet. I was hoping to share some soul feelings here. Positivity is always a necessity. But we need to let ourselves feel and admit what we think of as 'normal', involves feelings of sadness, fear, separation and anger sometimes. I loved what was said here "I feel contaminated". When my grandson fell one day scrapping his elbow, the first thing I thought was "do I have an open cut anywhere on my hands or arms" before I picked him up. Man, I went through all those feelings in one second. And that is my 'normal' response to most life situations like that.
There is physiological healing along with physical healing needed on this journey.
I want all of me in the same place when the trip is over!
It will be hard not to drink beer on Super Bowl Sunday!
MoMa

Lynn K · « **Reply #897 on:** January 30, 2015, 09:49:09 pm »

Really not so hard to not drink beer if you consider the consequences.

I haven't been able to drink beer or anything else with alcohol since I was dx with cirrhosis Jan 08 not even a non A beer as there is a small alcohol content. But I am still here and giving up beer is a small price to pay for being alive

Katie · « **Reply #898 on:** January 30, 2015, 10:42:14 pm »

I used to really enjoy a ice cold beer on a hot day after working in the sun or with pizza and on occasion enjoyed wine with a nice dinner but it started making me feel really rotten so I quit prior to being diagnosed, thinking it was just temporary and haven't had a drop since then in 2004.

I haven't missed it and found lemonade or a fragrant tea does the trick and really tastes better. One must listen to our bodies as it tells us what is good or bad, sometimes.

Right now I crave sugar, but I try not to listen as I know better. HA!

Katie

Lynn K · « **Reply #899 on:** January 30, 2015, 10:50:02 pm »

OH now you say that as I eat my last cookie from a small bag of Famous Amos

Thanks!

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