Author Topic: Harvoni Side effects (Read 2191879 times)

Katie · « **Reply #900 on:** January 30, 2015, 10:59:50 pm »

I don't always listen, Lynn. We can't deprive ourselves of everything, all the time! Alcohol, no big deal. Deserts on the other hand.....

Mugwump · « **Reply #901 on:** January 30, 2015, 11:13:46 pm »

Quote from: Lynn K 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!

The way I just made myself feel better is to buy pack of Newman O's cookies and because a portion of the profit goes to charity I consider this a tax on my sugar cravings. LOL

But man do those cookies ever taste good, an old fashion real vanilla bean based filling done in a crisp old school sugar cookie biscuit made with real butter! Worth every calorie and insult when balanced off with a good cup of dark roast coffee with real creamer. Call it a Friday present for being a good boy.

Who knows during the super bowl I might even have some poutine with kickass coffee just for old times sake. Damn the calories and torpedoes, full speed ahead I say!

Eric

anniemybaby · « **Reply #902 on:** January 31, 2015, 09:03:42 am »

Well its Saturday I'm alittle over 2 wks on harvoni waiting patiently for my 2 wk test result not really having anymore side effects just really tired and the 10 degree weather doesn't help everyone have a happy saturday

smarsman · « **Reply #903 on:** January 31, 2015, 10:27:55 am »

Dizziness versus imbalance. I experience dizziness with a spinning feeling. This is the third night in a row that when I got up to pee and when I woke up in the morning, that I was wobbley, almost staggering for about 10-15 minutes. I would not name this dizziness but maybe that's what is being called that by others. How do you experience your "dizziness"?

moma · « **Reply #904 on:** January 31, 2015, 03:59:27 pm »

Woke up to hives on my neck, face and around my belly. Called the help line to ask about taking a antihystimine. No interaction with Harvoni.
Annie I'll trade you weather. I'm in Tahoe and we are walking around in flip flops! We need snow and rain so bad.
Moma

anniemybaby · « **Reply #905 on:** January 31, 2015, 04:49:35 pm »

Moma i hope your feeling better n ohhhh flip flops I almost forget wat they look like have a good sat night I'm on the couch snuggled up with my furbabys hubby went out for a few drinks I never was a big drinker but I loved my weekends of wine n dancing I haven't been out in forever and my GI Dr told me a glass of wine every once in awhile won't hurt but I choose not to don't want it to effect my treatment as for diets I'm on none I eat wat I want n try n drink lots of water

Katie · « **Reply #906 on:** January 31, 2015, 05:00:28 pm »

Sounds like you are doing everything right Annie. Stay warm and keep snuggling. It's good for the soul.

I am sorry to hear that Moma! How miserable. Hope you get some relief! I love the Tahoe area. It is beautiful but strange you don't have snow. Neither do we. SSE Alaska has skipped winter this year!

I miss my flip flops too! I live in a rain forest and love the rain but the X-traTuff rubber rain boots are SSE Alaska's tennis shoes! Ha. I've seen people show up to concerts, social events and even weddings wearing them because of the rain and no one cares as it makes perfect sense. Have a wonderful weekend!

Katie

anniemybaby · « **Reply #907 on:** January 31, 2015, 05:08:23 pm »

I live in pa n getting more snow tomorrow night into Monday ugh awww Katie rain forests just remind me of the tropics n I love that

Katie · « **Reply #908 on:** January 31, 2015, 05:19:08 pm »

Cool for tropics, but milder in the winter than back east. This year and even last year have broken records for warm temps. Our flora and fauna are beautiful. Love it here. Clean air, clean water, wonderful woods and muskeg with ferns and moss and seafood galore. Some people have a real issue with all of the rain (over 150-200 inches a year) but I love the dampness and the mystic fog. Very calming and energizing.

kate0b1 · « **Reply #909 on:** January 31, 2015, 06:50:58 pm »

Katie, I love the rain it's one of my favorite things, and I would go anywhere right now to wear flip flops, they are my second favorite thing lol more snow this w/e here did I mention I HATE SNOW

Katie · « **Reply #910 on:** January 31, 2015, 07:01:07 pm »

Hi Kate: I used to love the snow, but with my mobility issues, skipping it this year was so much easier. They are forecasting snow this next week but it won't last as the highs will get in the upper 30's to mid 40's and then it will rain. It has been such a weird winter. Even farther north, hardly any snow and that is strange for Alaska. Our poor polar bears. Even here, we count on snow melt in the the higher elevations in spring for our out-migrating salmon fry, so we'll see how that goes. Everything is intertwined and it is a delicate balance that we are messing with. <BIG SIGH>

mario555 · « **Reply #911 on:** January 31, 2015, 08:12:08 pm »

Katie. I wish I could send you some of our snow! I live in ''northern New Brunswick in Canada and we must have close to 10 feet of snow where it hits the ocean shore. If you look north from where I live, you can see Santa Clauss!!!! At least with your newfound health, you'll be able to undertake some new challenges like ''save the north'' or something else rather than being like me and obsessing with Hep C.
I've had the disease for so long and my health status was falling so fast in the last few years that I was beginning to precipitate the end! Like a very slow suicide! I was eating bad, no exercise, a beer here and there and it was getting worse, etc...
Since I've started this medication, my food choices have improved tremendously and I'm gaining a new appreciation for life. I've never been fat but since starting the treatment, I've lost 5 pounds and I had none to lose! Its hard to gain weight with carrots!!!!
To be really truthful, I've had it with the medication; I'm on my 12 th week and I have 12 more to go! My body is smelling like chemicals and I feel its coming out of my ears (who keep ringing anyway!) What keeps me going? The alternative! Even if the medication makes me fell so, so, the thought of dying if I don't finish my treatment keeps me going. Although the treatment is 90% better than Int-Riba, I think my aging body is getting more sensible to any chemicals I put in. So, this is my big shot at getting cured!
Also, for the ones fretting about food and the effect it could have on the treatment, don't worry. The medication does nothing else than look for Hep C viruses and attaches itself to it to stop the replication. It doesn't need you to do it, that's all what it does; hunt for hep C viruses! The medication has nothing to do with Interferon that used your body defenses to fight the disease. This medication is not alive, it's a chemical that attaches itself to the virus and sticks to it no matter what. It has absolutely no effect on cold viruses or any other viruses, only an attraction for a specific part of the Hep C virus (which is good or else it could attach itself to let say, heart, eyes, etc... and could prevent replication...). We are the pionners for a new way of curing many diseases through the same type of approach!
Good luck to everyone!

BattleTheBeast · « **Reply #912 on:** January 31, 2015, 08:46:17 pm »

Hi Moma,

I had a huge allergic reaction to Olysio when I was on S/O and the ID doctor said Benedryl was fine, he also gave me some prescription as well but I can't remember the name.

@Katie, I always wanted to visit Alaska but I don't think I'd like to live with that much rain. I need sunshine but I'd love to get in on some of that fresh salmon and other seafood! It's ok here but not like it is up in Maine or Mario's neck of the woods. I remember about 10 or so years ago being up in the Tacoma area for work and going over a smaller bridge down the road from the office and seeing the salmon run, It's an incredible site to see in person.

@Mario - Hang in there! I am on a possible 32 weeks because of the 8 weeks on S/O before I started the 24 of Harvoni. It's a dang marathon! Just cracked open bottle number 3 of Harvoni so I have been on treatment altogether for 16 weeks so like you I am halfway there. Someday it will be over but I will deal with whatever I have to and rid myself of this menace that's taking the spunk out of me. I want my spunk back dangit!!

@Annie, Kate - we will all be watching the weather Sunday night, last check it's moving north so we might get lucky again like last week.

Time to put the ice bag back in the freezer and switch to the heat and massager...

Mel

Katie · « **Reply #913 on:** January 31, 2015, 09:08:50 pm »

Hi Mario! I am sorry you've had such a rough time. Being sick as the norm really sucks but now we have the opportunity to start feeling good and maybe enjoy our life to it's fullest. I really started feeling crummy and as soon as I started this treatment improved by at least 75%, so I am happy.

I have had tinnitus for years, probably due to a year long sinus infection. The first 2 days on treatment it increased 100% and I thought 12 weeks of this is going to be terrible. It was a loud static roar and I never had it like that before. Then miraculously I had two days of total silence. First time in probably 12 years and I got excited, but it came back to the low "normal" level. It still fluctuate some but it's about the same. Go figure? Hopefully your ringing will disappear as it is really irritating and I miss the silence of the woods, but I think I am stuck with it.

I just started my third and final bottle of my 12 week treatment and for about the last week noticed my urine having a very strong odor. I'm sure it is the build up of the medication as it has been that way even when I drink all my water and it's diluted completely. I just look at it as an indication that the medicine is working! Those little buggers are dying and they stink! HA!

On your offer for sending me snow...no thank you. I'll be selfish for now and keep our mild temperatures and rain. We had so much that we had a historic flooding in our town. The creek in town actually flooded to the point of people near the creek being evacuated. That has never happened before. Over 10 inches of rain in 2 days and the ground was already saturated and then we had a 19.2 high tide and it flooded. It was amazing as we handle our rain very well here!

Take care Mario and keep your spirits up because a new beginning is just around the corner.

Katie

mario555 · « **Reply #914 on:** January 31, 2015, 10:01:14 pm »

hi catie. Same with me, the ringing in my ear. It varies from 2 to 9 out of ten. I even had few days where it was 0! What a relief... As for my urine, same thing, it smells like its 3 days old although I drink 3 quarts of water plus coffee and other liquids.
I'm somewhat strongheaded so it keeps me going (my wife would say very stubborn...). She's an angel having gone with me through all this disease. It sure changed our marital behaviour to say the least! She got tested 4-5 times since I've known I had the disease and she's still not convinced she doesn't have hep c! She eats crappy food at night and wonders why she has trouble sleeping and why her digestion is so poor. She's almost convinced she has a ''ghost hep c'' lurking somewhere!!!
For the first time since 1992, I'm less afraid to give this disease to people because of my UND after 4 weeks. That's somewhat of a relief. I sure hope my sex drive will start to pick up from the pits where it was! Poor wify!
As for energy, it is definitely up by a large margin. It's only my 'get up and get going' that is slow lately. I surely laughed when I saw comments about Christmas trees and stuff. I put the outdoor lights on the morning of the 24 and took them down on the 26! Let me tell you there were few strings attached to the house. I showed her the comments from people on this forum to ''prove to her' I wasn't alone!
It's kind of funny to think I was all alone in my neck of the woods with this disease and since joining this forum, I realize we have lots in common in sickness and in courage!
Good luck and God bless!
Mario

kate0b1 · « **Reply #915 on:** February 01, 2015, 06:59:52 am »

OMG can we talk about the pee smell, i thought i was the only one and was just weird. I feel like when you eat asparagus (we eat a lot of it). Im going with what katie says and the virus is dying and it smells lol.

and good morning everyone

kate

mario555 · « **Reply #916 on:** February 01, 2015, 09:36:24 am »

Aspargus, coliflower, turnip and similar vegetables will worsen the smell of sweat, piss, etc! It's wonderful for your health but it is smelly. Garlic, onions, indian spices and others will also do that.
Eating sweet fruits will relieve the smell a bit but it is more fatening.

Lynn K · « **Reply #917 on:** February 01, 2015, 04:54:37 pm »

Tinnitus had it for years always figured it was from a lifetime of working in machine shops or as a mechanic. Would be a pleasant surprise to have it be from hep c and that it could stop at some point.

I am pretty good at ignoring it but it is always there. The only time I don't hear it is at work because on the general noise in the shop.

Katie · « **Reply #918 on:** February 01, 2015, 05:16:47 pm »

That is interesting Lynn. I didn't realize so many with Hep C have tinnitus and actually when I started with the fatigue and other symptoms of Hep C, before my diagnosis,is when my ear ringing started. I assumed it was the sinus infection, but maybe not! Those 2 days where I was free of it were so incredible and made me realize how irritating, although not debilitating, it is. The silence was golden and I would absolutely love to have it go away permanently. I won't get my hopes up on that but it certainly would be a bonus.

Any body else on this forum experiencing this?

Another new thing for me lately is a bit of vertigo. A light headed, minor spinning, especially if I look up. I now have to be REALLY careful on a ladder or step stool. Yesterday I was on a 3 step ladder getting my closet purged and almost fell backwards. The last thing I need is a fall, so I am going to be very careful.

Interesting how all these little things pop up. Harvoni related? Who knows.

Whatever it is, getting rid of this beast is what we need to focus on and all will be good in the end.

Katie

Katie · « **Reply #919 on:** February 01, 2015, 05:29:54 pm »

Quote from: mario555 on February 01, 2015, 09:36:24 am

Aspargus, coliflower, turnip and similar vegetables will worsen the smell of sweat, piss, etc! It's wonderful for your health but it is smelly. Garlic, onions, indian spices and others will also do that.
Eating sweet fruits will relieve the smell a bit but it is more fatening.

Hey Mario. It doesn't matter what I eat but when I first noticed it, my first thought was...hmmmm smells like I ate asparagus only stronger, but I didn't. It has been a week since it started to be noticeable and it always smells strong to where it is rather disgusting. HA! Being a biologist, we tend to notice things like that and don't have a problem talking about it. I tell people I am a poop-ologist as I am always interested in scat, whether it is my dog, or cat or bear or deer! They just tell me I am sick. All in fun. So I stick with my theory, that the little buggers are dying and they smell! Even Kate agrees with me! <grin>

Enjoy your day and make some snow angels for me!

Katie

BattleTheBeast · « **Reply #920 on:** February 01, 2015, 06:02:33 pm »

Well now I have something else to look forward to, stink asparagus pee!!

I'd say I'm looking forward to it but I am kinda NOT!

Thanks guys!!

Mel

kate0b1 · « **Reply #921 on:** February 01, 2015, 06:06:21 pm »

lol Mel, katie says its just the virus dying, so I'm going with that but I'm hear to tell you, I'm just happy someone else has this happing

kate

Katie · « **Reply #922 on:** February 01, 2015, 06:21:34 pm »

$:-\$

I'm still giggling!

mario555 · « **Reply #923 on:** February 01, 2015, 06:31:04 pm »

Actually, watching this discussion I'm more laughing out loud than anything else! Happy to see I'm not the only one loosing my mind

You guys are funny tonight!

Tommync11 · « **Reply #924 on:** February 01, 2015, 06:36:01 pm »

Hey everyone,

Day two of Harvoni slight headaches,stomach growling,hungry,fatigue,funny taste in mouth. all very mild so far. I am not a drinker, non smoker, no drugs,athletic,( well mens slow pitch softball )lol. so i hope this is what to expect through the duration.i have been reading this thread for the last couple days thought i would chime in and keep ya posted on my journey the next 12 weeks .

Tom

Katie · « **Reply #925 on:** February 01, 2015, 06:45:02 pm »

Welcome aboard Tom. Hope your Harvoni journey is an easy one! I had a metallic taste just for the first couple days and then it went away and my other symptoms faded fast. Just some minor issues that come and go but nothing I can't handle, in fact I feel better with this treatment than I did before starting. In fact I feel 10 years younger as my fatigue had really taken over and my energy and sleeplessness was horrible. All in all, this has been a blessing, in more ways than one.

You found the right place to be and whatever questions you may have, someone on this forum will share their knowledge and experiences with you. There is a lot of support in this amazing group.

Katie

anniemybaby · « **Reply #926 on:** February 01, 2015, 06:55:22 pm »

I'm so glad I checked out this thread tonite I get alot if tinnitus infections and as for the strong pee yep lol

Wilson · « **Reply #927 on:** February 01, 2015, 06:58:41 pm »

Just went back and read the last three abstracts/studies for Having. I don't see anything about urine odors, ringing in the ears, or blood pressure issues. I did not read anything that would indicate dizziness either. My guess is that these must be some isolated issues with individuals. Based on the studies it appears that side effects could possibly be caused by stress. My physician was one of the authors and study managers of 2 studies in 2014. I had ask her if she could define the 14% with some adverse effects. She said that no patient in either study had any moderate to severe side effects. Less than 3% had head ache issues.

anniemybaby · « **Reply #928 on:** February 01, 2015, 07:24:21 pm »

Thanks Wilson I think the strong urine has to do with our diets lots n lots of veggies its kinda like the saying you r wat u eat lol

SunIsOut · « **Reply #929 on:** February 01, 2015, 08:18:50 pm »

Hello Friends,
I was diagnosed around 2000. I had a biopsy done back then but was Genotype 1a and they did not treat.

I had a transjugular biopsy in 2012 because my platelets were too low for a normal method. I am F4 and Platelets around 50 with plus high iron. I did phlebotomy for about a year. I could not do regular treatments do to the above reasons.

I changed my diet about 12 years ago knocking out any ingredient that I could not pronounce and last 8 years with as many organic foods that I can. I exercise and went to the gym today for the bike ride, machines and the olympic pool laps.

I am 59 YoA and feel great. My doctor prescribed Harvoni on December 30th, the insurance company declined, the doctors are doing the appeal and I hope to know this week plus results on viral load and latest MRI are forthcoming.

I hope this gets approved soon and I can get started. I have waited a long time for this day. Glad I found this forum.

anniemybaby · « **Reply #930 on:** February 01, 2015, 08:36:56 pm »

Welcome sunisout I just finished up my 2nd week on harvoni n feeling OK not 100% but I'm hoping to get there good luck with getting your script I've learned a lot from this forum they are all life savers

anniemybaby · « **Reply #931 on:** February 01, 2015, 08:47:41 pm »

I'm gonna try working tomorrow I've been so tired but the more I continue to lay on the couch the worse I'm feeling its starting to effect my relationship with hubby I just don't wanna do or go nowhere maybe depression is setting in I don't know

SunIsOut · « **Reply #932 on:** February 01, 2015, 08:53:50 pm »

Quote from: anniemybaby on February 01, 2015, 08:47:41 pm

I'm gonna try working tomorrow I've been so tired but the more I continue to lay on the couch the worse I'm feeling its starting to effect my relationship with hubby I just don't wanna do or go nowhere maybe depression is setting in I don't know

I love the swimming and it is my exercise dessert! I joined the college gym for about $90 a semester and if that type of resource nearby I highly recommend it. Hang in there we will get though this!

Katie · « **Reply #933 on:** February 01, 2015, 09:12:42 pm »

Hi Sunisout...My insurance didn't deny it but wouldn't accept it until I had current blood work done for VL and an ultrasound. My doctor wrote a letter as well and it came through without a hitch, so hopefully yours will be the same.

I am 1a, was diagnosed about 9 years ago from an unrelated checkup and I have no idea where I picked HepC up or how long I have had it. I had a very physically demanding job for much of my adult life but due to joint issues went into the office for the last 10 years and have been retired for almost 2 years. About 12 years ago I lost my spark and as the years passed by I felt worse and worse, so the diagnosis made sense to me. I really struggled the last two so retirement has been very beneficial and I have been remodeling my house and doing things I've always planned on doing but never had time. I am doing great on the treatment and feel so much better since starting it.

So after all of that, I welcome you aboard and want to let you know joining this forum was the best thing I could have done. It is good to be able to talk to people who are in a similar situation and the information and support is great.

Harvoni is a miracle drug and I am so grateful the breakthrough happened in time for all of us. We are on the cutting edge of eradicating this virus and I find that exciting!

Good luck to you, and I hope you have good news shortly! Keep the faith!

Katie

BattleTheBeast · « **Reply #934 on:** February 02, 2015, 08:14:51 am »

Hi Sunisout,

Welcome and a great name! The Sun does come out when you get on this medication and it is a miracle to feel the fog lift. The forum is full of many supportive people and I have found it to be my place to find people who can relate to this road I am on.

I only found I had Hep C (1a) a few months ago and am so grateful for these new treatments. Today I am undetected and on TX with Harvoni. Hopefully in a few short week you will be able to say the same thing with whatever medication you and your doctor decide is best for you.

Take care,

Mel

Amj1951 · « **Reply #935 on:** February 02, 2015, 09:25:30 am »

Quote from: Wilson on February 01, 2015, 06:58:41 pm

Just went back and read the last three abstracts/studies for Having. I don't see anything about urine odors, ringing in the ears, or blood pressure issues. I did not read anything that would indicate dizziness either. My guess is that these must be some isolated issues with individuals. Based on the studies it appears that side effects could possibly be caused by stress. My physician was one of the authors and study managers of 2 studies in 2014. I had ask her if she could define the 14% with some adverse effects. She said that no patient in either study had any moderate to severe side effects. Less than 3% had head ache issues.

Hi Wilson, on the strong urine, are you drinking a lot of water? Its suggested to drink half your weight in ounces. EX.. if you weigh 150 to drink 75 ounces of water/day. (I know that can vary if you have other issues besides the Hep C. You might ask your doctor about it if so.)

Certain vegetables can cause the strong odor like.. asparagus. You might write down what you've been eating and google to see if they cause a odor.

I have low blood pressure, but mine has gone up to normal or even like 124/82 since being on the Harvoni, so I personally think it affects it, but I don't know that for a fact. Always ask the doctor since they are the ones making the big bucks : )

Meredith

pmm · « **Reply #936 on:** February 02, 2015, 03:58:48 pm »

Hello All,

First time posting but I have been looking for awhile. I started Harvoni on 12/27/14. My doctor requested 12 weeks but I was only approved for 8. My doctor said that was ok because she thought 8 weeks was enough for me. She said she has been requesting 12 just to be sure to get 8 approved.

I had zero side effects until this past Saturday. I woke up feeling dizzy/lightheaded with a headache and just generally crummy. My elderly neighbor came over for a visit and I told her how I was feeling and she said that sounds just like me when I forget my blood pressure meds. I checked my blood pressure and it was very high 149/107 which freaked me out since it is normally low-normal. I called my doctor this morning and she said to go to urgent care and get it checked there (I haven't gone yet today). I have a regular appointment with her tomorrow and she will let me know the results of my 4 week blood work (which includes viral load) fingers crossed!

I guess I can tolerate this for 3 more weeks to get rid of the HepC.

Pattie

art1951 · « **Reply #937 on:** February 02, 2015, 04:05:55 pm »

Quote from: Wilson on February 01, 2015, 06:58:41 pm

Just went back and read the last three abstracts/studies for Having. I don't see anything about urine odors, ringing in the ears, or blood pressure issues. I did not read anything that would indicate dizziness either. My guess is that these must be some isolated issues with individuals. Based on the studies it appears that side effects could possibly be caused by stress. My physician was one of the authors and study managers of 2 studies in 2014. I had ask her if she could define the 14% with some adverse effects. She said that no patient in either study had any moderate to severe side effects. Less than 3% had head ache issues.

I am not sure why but my nurse would always ask if my urine had a strong odor. It must be an indicator of something. I would mention it to your doctor just to make sure.

Art

Katie · « **Reply #938 on:** February 02, 2015, 04:21:06 pm »

I know dark urine is a concern because of jaundice and liver issues, but the doctor has never asked me about odor. I think we are just getting rid of toxins and our systems are saturated with the drugs at this point. (9 of 12 weeks)

mario555 · « **Reply #939 on:** February 02, 2015, 05:04:38 pm »

To pmm. For your blood pressure you will find many in here who dealt with this sudden problem. It is not mentioned as a side effect in the product. We also had a discussion wondering if these symptoms where random or a notable side effects.
I have never had high blood pressure in my life. In the first 2 months it went to 150/120. Usually I am a bit on the low side. It has since come down to 130/100. I'm not doing anything about it because my belief is that this high blood pressure is due to the medication and I only have to endure it another 12 weeks. To me it's a worry but my hep c cure is more important.
Obviously, go see your doctor but keep in mind you have a short lived situation and the aggressiveness of her treatments should be tempered by that fact.

BattleTheBeast · « **Reply #940 on:** February 02, 2015, 05:56:11 pm »

Quote from: Katie on February 02, 2015, 04:21:06 pm

I know dark urine is a concern because of jaundice and liver issues, but the doctor has never asked me about odor. I think we are just getting rid of toxins and our systems are saturated with the drugs at this point. (9 of 12 weeks)

Ya think Katie? I am now at week 17 between the S/O combo and the Harvoni and mine is very clear. Actually it's clearer than it's been for a long time. Maybe because it was darker for so long that I didn't notice the big change until it got really clear along the way. I do drink a ton of water and not much of anything else. Coffee in the AM and try to limit to 1 big cup most days (10 ounces) from my Keurig brewer, maybe a Gatorade or Pineapple Juice once a week, then the occasional Hot Cocoa when I need a chocolate fix! I have also been working on smoothie recipes but to me they are almost a meal so I don't think of them as a drink. Trying to so a smoothie for breakfast since I was never a big breakfast eater.

Honestly it probably happened and I was so busy with everything else, like the evil rash and itch I didn't notice!

Mel

Mugwump · « **Reply #941 on:** February 02, 2015, 07:40:49 pm »

Katie if you really want to mess with the lab tech try half a jar of pickled beets about 12 hours before a urine sample test. I did that a quite few years back to my doctor when I had a to have an updated professional emergency drivers exam done for a job out in the bush for which the oil company insisted on a screening for drugs, diabetes and alcohol. His assistant almost had kittens on the spot. I got reamed out by the doc though. But passed the test with bright red pee no problem. Next time I might try asparagus.

I don't think Harvoni is causing me to have unusually dark urine but I know if I exercise hard and don't drink enough water or hold back too long it gets darker than usual. So yes most likely Harvoni is a little bit of strain on the human pipes and water reservoir system. I would only be concerned if you start feeling pain in the back associated with the kidney region and it is not relieved by passing urine. I felt a little obvious kidney and bladder pain at times but they have all gone now that I am well into the 24 week stretch.

anniemybaby · « **Reply #942 on:** February 02, 2015, 08:15:23 pm »

I've finally got used to drinking tons of water n Im starting to feel totally different going on wk 3 of harvoni things are getting better decided a complete leave fr my job till done with treatment I need to focus on my health I'm looking for a good healthy cookbook I wanna eat healthy but it gets really expensive so I'm looking for n inexpensive healthy way if eating

Katie · « **Reply #943 on:** February 02, 2015, 08:43:15 pm »

I was only commenting on Art's comment about asking if the urine has an odor. I do not, nor ever had dark urine as my liver fortunately is in good shape. It's just the past week it is noticeably strong smelling and I am not concerned about it and would not expect it to be listed as a side effect in the trials. It is just one of those interesting, biological functions that seemed to have changed.

Mario, you are funny. I love beets, especially fresh out of the garden and have always avoided them prior to a physical.

Annie, I am so glad to hear you are feeling better. The water really does help but I think our systems adjust to the medication as well. I have noticed some differences lately. Nothing serious but I am a bit more tired even after a good sleep and I am a bit light headed with some vertigo. I contribute this to being on the treatment for 2 months and all that healing certainly has an effect as well. My system has been working hard to clear this all out and I am sure my immune system and liver is stepping up to cleanse all the toxins in addition to the virus.

All is good and I have a little over 3 weeks to go on Harvoni and am looking forward to the time to continue to move by quickly as the 12 week test after treatment will try my patience. By that time spring will be rapidly approaching, my remodel will be completed (new floors in the back rooms next week) and I will be busy planting seeds and flowers. That is always rejuvenating!

Enjoy your evening everyone and have a good rest. It is so good to be part of this platoon fighting the dragon!

Katie

Mugwump · « **Reply #944 on:** February 02, 2015, 09:01:14 pm »

Quote from: anniemybaby on February 02, 2015, 08:15:23 pm

I've finally got used to drinking tons of water n Im starting to feel totally different going on wk 3 of harvoni things are getting better decided a complete leave fr my job till done with treatment I need to focus on my health I'm looking for a good healthy cookbook I wanna eat healthy but it gets really expensive so I'm looking for n inexpensive healthy way if eating

For one try East Indian cuisine. I make naan bread which are really easy and you can use inexpensive pea and bean based flours in combination with whole wheat roti flour. Contrary to popular belief Indian Cuisine is not all spicy foods! Dal is a staple and can be made with any number of inexpensive beans. This is one of my favourite style soups or dal http://www.simplyrecipes.com/recipes/red_lentil_dal/ this is similar to what I make and the spices are only a question of taste and can range from inexpensive to expensive. But by and large if make your own spices the price is at least 70% less than pre made spice. I try to eat a meat free meal as often as possible and buy red and green lentils and split yellow, green peas and always have them available to make a quick side dish. Mustard greens can be used in soups or added to a dish hot bean dish with or without yogurt on top.

It is well worth finding amd using a cheap coffee grinder or old school hand grinder, you will find that commercial processed spices are inferior to what you can do on your own for a fraction of the cost and you will use less because it will be fresh.

Chinese food and technique is also good on the wallet if done sensibly.

A large part of great cuisine is not wasting and we in the West are terrible in the way we waste food. The original French methods of creating mirepoix was the use of the base and leaves the vegetables cleaned of all dirt. Not what it has become today in big time restaurants who waste more food than they serve! Your carrot and onion tops are browned slightly then into the stock pot. I cringe when is see someone discard the leaves of a head of celery or use nothing but peeled potatoes. I assure you that if you adopt an old school attitude toward your cooking the costs will drop almost overnight.

Here is a little known fact, during the second world war when the Nazis started using slave labour from the concentration camps they fed the untermensch and Jewish slaves with with the scraps from the army camp commissary kitchens. The doctors could not understand why they were actually not starving until they realized that they were actually feeding them the best part of the food. So they change that policy to deliberately starve the slaves. A sickening fact about human history and an important lesson that we seem to forget about nutrition and diet!

anniemybaby · « **Reply #945 on:** February 02, 2015, 09:18:41 pm »

Wow mugwomp you sure know your foods very impressive n I'll def try east Indian cuisine thanks for the link I always heard Indian food was good I've never tried it and there's no Indian restaurants in my area I hope I can find those diff ingredients thank you so much and Katie I hope you feel better I absolutely look forward to your posts everyday you've made a big difference on my outlook I don't know where I'd b without this forum I learn something new every day thank you to all

Katie · « **Reply #946 on:** February 02, 2015, 09:21:37 pm »

Quote from: anniemybaby on February 02, 2015, 08:15:23 pm

I've finally got used to drinking tons of water n Im starting to feel totally different going on wk 3 of harvoni things are getting better decided a complete leave fr my job till done with treatment I need to focus on my health I'm looking for a good healthy cookbook I wanna eat healthy but it gets really expensive so I'm looking for n inexpensive healthy way if eating

Hi again Annie. Just wanted to add to Eric's good advice. During the winter I have a hard time eating enough salads so I make soups. I love soup and it is an inexpensive way to eat very healthy and you don't have to cook every night. There are great recipes on line and just GOOGLE Healthy Recipes. Here is one link: http://allrecipes.com/recipes/healthy-recipes/

I will buy a bunch of organic Kale and add it to everything; all my soups or stews and even enchiladas or spaghetti sauce! I prefer kale over mustard greens but that is a personal choice. Both are really good for you.

Katie

Katie · « **Reply #947 on:** February 02, 2015, 09:25:35 pm »

Quote from: Mugwump on February 02, 2015, 09:01:14 pm

It is well worth finding using a cheap coffee grinder or old school hand grinder, you will find that commercial processed spices are inferior to what you can do on your own for a fraction of the cost and you will use less because it will be fresh.

Great minds think alike Eric. I have one grinder for my coffee and one for my spices. I even dehydrate lemon peels and grind them up to make my own lemon pepper!

SickTired1 · « **Reply #948 on:** February 03, 2015, 02:16:22 am »

Count me in on the lightheadedness. Day 6 of tx harvoni plus full load of riba. Otherwise so far so good!

BG42 · « **Reply #949 on:** February 03, 2015, 06:42:39 am »

Hi Everyone,

I'm still waiting to get my final approval for Harvoni. In the meantime, I'm still lurking in the forum thread and reading your helpful and comforting posts!

They really help, and give me an idea of what to expect when I get approved.

Speaking of the approval, I did get the approval from the insurance company for an 8 week treatment of Harvoni. I received that letter at the same time as my denial letter for the 12 week treatment. My GI doc firmly believes the 12 week treatment is best for me because of my stage 3 fibrosis. So now they are going back and forth and working to get my 12 weeks approval. So for now, I wait. I did get my letter from Gilead saying my co-pay was only 5.00!!! I feel super lucky, so now just waiting for a 12 week approval. Here's hoping I get it!

fuzzy72 · « **Reply #950 on:** February 03, 2015, 07:57:47 am »

Hello fellow fighters. I have a question about Harvoni side effects. I have 24 days left of 12 weeks. At 4 weeks I was undetected. I have night sweats every 1 to 2 hours every night. This started to be every night right around the 4th week. I drink plenty of water and other than sleep deprivation and being tired I am tolerating well. I see many discussions on the side effects but rarely about night sweats. I was diagnosed in October 14, also have cryoglobineimia, cirrhosis. The cryo has not improved as much as I thought it would by now either. Any thoughts appreciated.

Amj1951 · « **Reply #951 on:** February 03, 2015, 10:07:11 am »

Quote from: Mugwump on February 02, 2015, 07:40:49 pm

Katie if you really want to mess with the lab tech try half a jar of pickled beets about 12 hours before a urine sample test. I did that a quite few years back to my doctor when I had a to have an updated professional emergency drivers exam done for a job out in the bush for which the oil company insisted on a screening for drugs, diabetes and alcohol. His assistant almost had kittens on the spot. I got reamed out by the doc though. But passed the test with bright red pee no problem. Next time I might try asparagus.

I don't think Harvoni is causing me to have unusually dark urine but I know if I exercise hard and don't drink enough water or hold back too long it gets darker than usual. So yes most likely Harvoni is a little bit of strain on the human pipes and water reservoir system. I would only be concerned if you start feeling pain in the back associated with the kidney region and it is not relieved by passing urine. I felt a little obvious kidney and bladder pain at times but they have all gone now that I am well into the 24 week stretch.

Long time!!

I LOVE your comments about the beets. I really like beets but the first time I actually noticed what happens, I thought I was bleeding to death. It was rather pathetic especially since it was like the middle of the night and I woke a doctor : )

I have missed your recipes. Not sure if you saw my other post but everyone loved the oriental dish.

Something new I was telling Kate, I have not slept well since being on the Harvoni. I sleep good, but wake at like 3,4 or 5 am, but "I" slept a good 8 hours last night so I am hoping that is all behind me. (Fingers crossed!!)

I go for my 4 week labs tomorrow. I think the liver doctor is excited to because they've called me like 4 times to make sure I'll be there.. like why would you miss THAT appointment of all things?!?! : )

I have to get moving. I hope everyone has a great day!
Meredith

wa7uib · « **Reply #952 on:** February 03, 2015, 10:58:56 am »

Hi everybody. I been staying abreast of everybody's comments and posts the 5 weeks I have been on the Wonder drug. They are so very helpful. Thanks everbody. We all pull together. I have a question now though. I wonder if anybody has had a problem with urinating every few minutes since they have started the treatment? I have this problem but no infection indicators. Don't have any burning or anything. I drink water all day and wondering if that's all it is. My family doctor put me on antibiotics, and I wonder if I even need those. Anyway thanks for anybody's input.

Long_Haul · « **Reply #953 on:** February 03, 2015, 12:38:19 pm »

Meredith, good luck on the blood test!

Larry, hang in there, I sometimes don't get more than a half hour between bathroom trips myself. It comes and goes. Most of the time things are more normal. Hang in there, things should stabilize at some point. It is good that you have you Doc involved.

Best wishes,

AL

Mugwump · « **Reply #954 on:** February 03, 2015, 12:40:11 pm »

Quote from: Amj1951 on February 03, 2015, 10:07:11 am

Long time!! I LOVE your comments about the beets. I really like beets but the first time I actually noticed what happens, I thought I was bleeding to death. It was rather pathetic especially since it was like the middle of the night and I woke a doctor : )

I have missed your recipes. Not sure if you saw my other post but everyone loved the oriental dish.

Something new I was telling Kate, I have not slept well since being on the Harvoni. I sleep good, but wake at like 3,4 or 5 am, but "I" slept a good 8 hours last night so I am hoping that is all behind me. (Fingers crossed!!)

I go for my 4 week labs tomorrow. I think the liver doctor is excited to because they've called me like 4 times to make sure I'll be there.. like why would you miss THAT appointment of all things?!?! : )

I have to get moving. I hope everyone has a great day!
Meredith

Meredith I started another thread down the list where we should post things like recipes and the like. And thanks for the compliment about that dish. You can use the basic concept and substitute chicken but it does not work as well with a stir fry beef because of the classic Cantonese concept of hot, sweet and sour in combo with 5 spice so it works better with milder tasting meats.

I will post some other Chinese classics I know in this http://forums.hepmag.com/index.php?topic=2118.new;topicseen#new thread along with some photos of how to prepare the ingredients correctly along with what the dish should look like. My all time favourite is an absolutely incredible version of how to do a black bean green pepper and cuttlefish dish that if done right the squid is super tender. It is really hard to prepare and in the very best of the West Coast restaurants is very expensive because or the prep involved not because of the cost of the ingredients. I would imagine that in the Southern US you should be able to get decent squid from Mexico. Some of our large high quality frozen squid comes from there. Preparing large squid correctly is an art and out here the Chinese are the absolute masters.

I know you will be UD Meredith! And as far as the sleeping goes, the beautiful part is waking up even if you have only had a few hours and not feeling like you have a hang over for the first time in so long that you forgot what it was to actually feel good.

That is the part that is amazing IMO, how fast the liver and your body actually heals once the infection is gone and your immune system stops working in overdrive.

My arthritis in my spine which was crippling is backing off to the extent that I am stable on my legs and not in serious pain, the swelling and susceptibility to cold in my joints between the phalanges in my hands has abated and actually reduced in size. I can play music that I have not been able to play in years. Like I have said having an immune system working on over-drive for years to keep HCV from killing you is a two edged sword. That was the real problem with interferon treatments they all make your immune work so hard that it is like having a very serious case of the flu. Harvoni along with a good natural immune response to clear the virus from the system seems to be a much better answer to out prayers.

Keep thinking the good thoughts everyone!
Eric

moma · « **Reply #955 on:** February 03, 2015, 01:57:48 pm »

Holy Mole! I had a total break down last night. It started with anxiety and went into a full blown panic attack. Thoughts like, what do we know about the long term effects of this drug? Like I was being poisoned and used as a lab rat. Everything closed in on me. I finely took a lorazapam and calmed down after crying for an hour. My poor husband kept saying "it's just the medicine talking, everything is alright". I think if I had not gone through Interferon and had such a horrible reaction to it I wouldn't be so freaked out about Harvoni side effects. I know it's not the same, but when I broke out the other day in a rash I was immediately back 10 years ago taking Interferon. I'm into my 3rd week. Are any of you having depression on this? I'm usually a calm easy going person, not much bothers me. I feel like I'm going to jump out of my skin!!!!
MoMa

Katie · « **Reply #956 on:** February 03, 2015, 02:22:35 pm »

Hi Moma, So sorry you are experiencing anxiety.

I have had some personality changes with Harvoni but not to your extent. My motivation is gone and everything is a chore which is unlike me. I make it a point to accomplish at least one thing a day, even though it may be just a small thing. I have new flooring being put in the back room so my house is upside down with all of the stuff having to be moved out and that doesn't help as clutter is bad for my mental attitude but I congratulate myself on actually getting the rooms cleared out!

I really don't want to see anybody or go anywhere and am happy to be just where I am. It doesn't make me anxious, it is just not my normal self and it started almost immediately on this treatment.

That being said, anytime we take a strong drug it may affect our mental attitude and it differs with the individual. So I just remind myself of that when I start beating myself up for not being productive. Others have mentioned anxiety on this forum so I am sure that is what you are experiencing.

I am very confident in this treatment and remember Solvadi has been around for awhile and the treatment has been improved with the combo of ledipasvi and it has undergone testing so I am not worried about long term negative side effects. One thing I know, it is better than having liver cancer or in need of a transplant down the road.

I hope you are doing better today and it was a one time issue. We are all here for you and you are fortunate to have a supportive husband! Blessings to both of you!

Katie

mario555 · « **Reply #957 on:** February 03, 2015, 02:30:43 pm »

Moma. If you have (tons of) time, you can go back to Posts done since mid-october. You'll find many posts of people suffering from sudden panic attacks. For me it lasted 5 weeks. Now in my 12th week out of 24 I am starting to accept those panic attacks that go from 0/10 to 9/10 in 2 seconds flat! You might notice they don't last long... I also took Valium because of its long lasting effects. You are not different except that for the first time in the history of hep c, you have a tolerable treatment that will most probably cure us all! You do what you have to do to remain calm but stick with your treatment! You remember the good times we had on interferon and Riba? Just tell yourself the end of treatment is not that far away and the disease might (will) be a thing of the past!
Good luck momy? Or is it moma?

Mugwump · « **Reply #958 on:** February 03, 2015, 02:54:21 pm »

Quote from: moma on February 03, 2015, 01:57:48 pm

I'm into my 3rd week. Are any of you having depression on this? I'm usually a calm easy going person, not much bothers me. I feel like I'm going to jump out of my skin!!!!
MoMa

MoMa
It is very difficult to overcome the habits of worry that bring on depression. In the first weeks of treatment I too drove my poor wife to distraction with worry and irrational fears. I have a firm belief in the good will and spirit of the individuals who are trying to eliminate this terrible disease. There is no doubt in my mind that being HCV active and the feelings of insecurity and helplessness common among those who are diagnosed have caused many good people to give up hope and fall into deep depression.

I personally knew a gifted musician friend who ran a record store out where I live and he took his own life, he left a wife and son alone. The depression of having been diagnosed with the disease profoundly effected him and in the end he did not understand that others were not against him. I witnessed his pain and despair and how the diagnosis of HCV was largely responsible for his declining state of mind. In the early 1990's when he took his life he had a respected classical music record store that was going out of business because of the pitiful state of the industry and the stupidity of the record industry NOT because there was a conspiracy to take away his living as he came to believe. It was a tragedy that I deeply felt and from it I learned much.

It is indeed unfortunate that there are those who make their living spreading FUD about the medical profession and have created an atmosphere that is counter productive. But it is the price we pay for free speech.

Please be kind to yourself and others, but have no patience with the disease itself which needs to be sent to hell where it belongs. It is ok to be grumpy if something gets in the way of your treatment but don't let the inevitable bumps along the way to SVR get you down! Give yourself a chance to be happy and you will be. Again it is really important to find things to take your mind off the disease and learn to put the treatment for disease in a clear and straight forward perspective, that way it will be much easier to get through.

I am certain everyone here is pulling for you so are the good people who are treating you and the people you love.

Keep up the fight you will win!
Eric

anniemybaby · « **Reply #959 on:** February 03, 2015, 03:58:33 pm »

I just ordered my last bottle of harvoni had a really strange night last night I usually can sleep n since being on harvoni I'm even extra tired but last night insomnia I didn't go to sleep till about 4:30 am n only slept 2 hrs I finally decided I needed to take something for me to rest not feeling so great but I am drinking lots of water

Amj1951 · « **Reply #960 on:** February 03, 2015, 04:34:52 pm »

Quote from: Long_Haul on February 03, 2015, 12:38:19 pm

Meredith, good luck on the blood test!

Larry, hang in there, I sometimes don't get more than a half hour between bathroom trips myself. It comes and goes. Most of the time things are more normal. Hang in there, things should stabilize at some point. It is good that you have you Doc involved.

Best wishes,

AL

Thank you AL!! : ) My follow up appointment is for Friday.. they say should have results by then. I know these aren't the ones that count but I am anxious to hear I am really not a on a sugar pill : ) ha! The energy is scary!

I hope your having a great day!

ERIC.. I'll respond to yours in a bit. I have to run out.
Meredith

moma · « **Reply #961 on:** February 03, 2015, 06:10:03 pm »

Thanks everyone for all the feed back. I just couldn't understand these crazy thoughts and feelings. Next time I see my doctor I'm telling him not to be so glib telling his patients there are NO side effects. Makes a person think they are nuts!
Katie I want to see your house when it's all done. It all takes so much time, but worth it.
Mario the name is MoMa like the museum. My Grandsons call me that. They are 4 & 5, and my whole world. I think if it weren't for them I wouldn't bother doing this treatment. But they make me want to stick around.
It just so happens I have a bunch of fresh beets waiting to be cooked. Try cooling them, dice and marinate in a vinaigrette. I love a big bowl of them topped with blue cheese dressing.
Thank all you sweet courageous people.
MoMa

Karen1124 · « **Reply #962 on:** February 05, 2015, 06:11:18 pm »

I am new to this site, I received Harvoni today I took my first pill at 2:50 pm.
Praying for the miracle like everyone else here.

Geno 1
VL 2million
40/64
F3

pmm · « **Reply #963 on:** February 05, 2015, 06:34:39 pm »

To Mario555

Thank you for responding to my post about blood pressure. I did go to urgent care and they took my bp and said yes it was high but they didn't want to give me anything that might not work with the Harvoni. They told me to put away my home bp monitor (very good advice) and just go there next week for another check. I have also been extremely anxious all of a sudden (I have to be the most not-anxious person ever normally) and I don't know if that is bp or what.

I also got my 4 week results with my Hep Doctor on Tuesday and I was undetected. Yay!

That was tempered by the blood work showing a very high ammonia plasma level (148), my doctor said she would report both ammonia and bp to Gilead. My ALT is now 13 and AST is 18 so an improvement there, but it was in normal range before.

moma · « **Reply #964 on:** February 05, 2015, 07:20:18 pm »

Hey Mario,
I have crazy blood pressure normally (up and down) and even when it's high I'm not anxious. So I think its the medicine. I'm having a lot of anxiety ever since starting Harvoni. Just keep an eye on the bp, try meditation or acupuncture.
Even now being on bp meds it still creeps up.
MoMa

HHburme · « **Reply #965 on:** February 05, 2015, 07:28:43 pm »

Welcome Karen......you are on your way to being cured. Lot of good info and help here. Day 55 of Harvoni for me. I was UD at the 4 week mark and going for 8 week labs soon.

Katie · « **Reply #966 on:** February 05, 2015, 08:04:08 pm »

Hi Meredith..What good news on sleeping 8 hours! It is wonderful! Glad you are doing better. Let us know your results so we can celebrate your success with you! I am sleeping really good too, but have been tired and light headed the past week or so.

I am on my 3rd and final bottle, so I am not worried about it, and I have been pushing myself a bit with the remodel being done. My house is upside down as EVERYTHING has had to come out from the back bedrooms and into the living room...ARRRRGGGG! I gave away 5 big bags of clothes and have several more, plus bags and bags of books! So I have been busy. It will be so good to get it all done, everything put back (still have to paint the bedroom but I like painting). Clutter is destructive to me and my dog and cat wonder what the heck is going on! HA!

Welcome Karen, You have found the best place ever to share concerns and get support and information. It really helps get through those tough days that we all have and the uncertainty. Only advise I have is eat healthy, drink lots of water, rest when you need to and be proactive and informed. Knowledge is power and it is reassuring. It's the unknown that drives me crazy!

Moma, Eric and Patti....sorry about the blood pressure issue and it is something to keep an eye on especially if it isn't normal. Mine has stayed consistently good, but as we have seen, things can change. Also on the ammonia plasma level, it can be caused by a high protein diet along with other things, but it is probably just part of your treatment as everyone here seems to have different issues, depending on their overall health. I would definitely keep on top of it though as your level seems very high.

Annie...are you sleeping better the past couple nights? Lack of sleep causes so many issues. I hate it and sympathize, so hang in there.

Enjoy your day everyone and I just wanted to let you who are snowed in, that we actually have snow in the forecast for this weekend and into next week. Imagine that; snow in Alaska! I don't anticipate it to last long as the temperatures are suppose to be mild, so I am not in a panic about it. I'm getting spoiled with such mild winter weather.

Katie

Katie · « **Reply #967 on:** February 05, 2015, 08:12:00 pm »

I got confused on who posted what. I should do one post per person from now on, I think.

Pattie, you had the BP issue and the elevated ammonia level. Sorry as you have gone through a lot, but you are doing SO well. Keep the faith and my thoughts go out to you for everything to balance out. Sorry again for the mix up!

Katie

I fixed it and hope I didn't get everything else backwards on the previous post. Please remember I am lightheaded and sometime thick skulled!

anniemybaby · « **Reply #968 on:** February 05, 2015, 08:53:00 pm »

Been extremely tired some days I don't even wanna get out of bed when I need to go somewhere all I can think about is getting back home into my bed

Katie · « **Reply #969 on:** February 05, 2015, 09:05:19 pm »

Sorry to hear that Annie. I think you stated you have lots of snow too. That can curtail your motivation. I know I feel so much better if I force myself to get out in the fresh air every single day, even if it is raining. I'll be honest, it is really hard to do sometimes. The only time I don't is if the wind is blowing like crazy. Even if it is just to walk around my yard for a few minutes, it is beneficial.

In the morning I always lay there for close to an hour and relish it as it is the only time I am not in pain with my bad knee and bad back. As soon as my feet hit the ground, there is pain. I am going to my acupuncturist/chiro this coming Wednesday and she often can give me relief. That being said, I know some days I don't want to get up and at 'em either, but moving is good. Depression can set in if you let the exhaustion take over and I've always believed, the more you do to the more you will be able to do and the better it is for your mental attitude.

You take care. I worry about you! Everything is going to be OK!

Katie

kate0b1 · « **Reply #970 on:** February 06, 2015, 06:36:28 am »

update on pee (sorry), i am almost done week 7 (last bottle should be here tomorrow), and now my pee has stopped with the weird smell (it lasted from about week 3 to now), so katie do you think this means the smelly aliens are dead??

kate

mario555 · « **Reply #971 on:** February 06, 2015, 07:07:40 am »

Kate. I am at week 13/24 and the smell is not over! It's not always there probably because of the water I drink but comes back regularly. Sorry!
Lately what bummed me out was for the early news of the virus coming back after 8 weeks of treatment. I have the feeling we'll see more of that! I think when they do their studies, the patients chosen were determined by their high likelyness to be cured. It makes me think of the wonderful milleage Ford tells you you'll have and after purchasing the car, you never get close to it! I am not saying the product doesn't work, I am saying it might be a tad lower than what's advertised!
This is why I'd be leary to take the medication for 8 short weeks if I'd be close to the borderline with the 12 weeks treatment. I hope I am totally wrong!

Karen1124 · « **Reply #972 on:** February 06, 2015, 09:47:27 am »

Good morning all thank you all for the warm welcome! tToday is day two for me I'm taking my pill at 9 o'clock a.m. Yesterday I cook it at 2:50 p.m. Have not had any side effects yet so I'm going to go on with my routine I'm going to jump on the trampoline and walk three and a half miles and pray for no side effects! hope y'all have a great day! I look forward to reading everyone's post each day!

anniemybaby · « **Reply #973 on:** February 06, 2015, 10:46:03 am »

Thanks Katie I'm trying you said exactly what my GI Dr said try to get out at least for alittle everyday she's also worried about depression she said its very common in hep c patients I hope your feeling better I don't like to whine to much cause I know there's a lot of people worse than I am I try to remain strong n optimistic have a good day n I hope your acupuncture works heard it does wonders

audreywald · « **Reply #974 on:** February 06, 2015, 11:12:18 am »

5 weeks into the Harvoni; over 15, 000, 000 VL. As of today, 5 weeks later. I am UNDETECTABLE!!!

Still having a lot of problems with the acid reflux disease as I can't take any meds for that (and I had a small arsenal) still have to on it for 5 more months, but it's looking really good, never thought I'd live to see the day!

ak · « **Reply #975 on:** February 06, 2015, 02:44:13 pm »

HI haven't posted since I started treatment. On week 2/12 of Harvoni. Overall amazed how well I am tolerating it. Had a few of the expected side effects but one that is really bothering me is having the chills. No matter what I do I cannot get warm. Nose and fingers seem to be frozen. I was never one to be cold in the past so this is quite a change. Also it seems everyday at 4pm I kind of crash and burn.. just feel like I hit the wall, irritable tired, difficulty concentrating, headache. I take my daily dose at 9:30 PM. I have a history of high blood pressure and can tell the Harvoni can make that worse. I also noted some mild heart palpatations. All in all I can deal with these as I am so grateful to be on this medication.
My best to all,
Ann

Katie · « **Reply #976 on:** February 06, 2015, 03:04:03 pm »

Hi Ann. I am so glad to hear you finally got on the Harvoni blessing! Your issues with being cold are strange, but I have come to realize, everyone has different experiences with this treatment. I get worn out much easier than in the past as well even though I feel so much better and my insomnia is gone. At week 8 I started getting lightheaded and my mood is not as joyful. I am not really depressed, but just a tad darker than normal and don't care to be around people. Even long phone calls irritate me! Ha! I also experienced more shedding than usual and still am but it is nothing serious. I just notice more in my hairbrush and after a shower. Nothing to panic about as other medications have cause this with me as well.

Several folks have BP issues and I would definitely mention that to your doctor along with the cold extremities. They may be related. I think I remember you saying you are a nurse (?), so I am sure you know all of this better than I do, but a reminder never hurts!

Take care and know you are on the road to crushing this monster once and for all!

Katie

Katie · « **Reply #977 on:** February 06, 2015, 03:07:26 pm »

Quote from: kate0b1 on February 06, 2015, 06:36:28 am

update on pee (sorry), i am almost done week 7 (last bottle should be here tomorrow), and now my pee has stopped with the weird smell (it lasted from about week 3 to now), so katie do you think this means the smelly aliens are dead??

kate

Hey Kate! Congratulations, that surely must mean those smelly little buggers are out of your system!

kate0b1 · « **Reply #978 on:** February 06, 2015, 05:36:40 pm »

@mario, i am leaning toward everyone being on for 12 weeks also, at first I was a little jealous of everyone only being on that long, but now I think everyone maybe should be on 12, lol I'm sure the ins co's care what I think. My last bottle should be here in the am and I won't stop worring about it until it's here, I had a little drama with thus refill so I'm egey about it being here !

Katie · « **Reply #979 on:** February 06, 2015, 06:19:12 pm »

Quote from: audreywald on February 06, 2015, 11:12:18 am

5 weeks into the Harvoni; over 15, 000, 000 VL. As of today, 5 weeks later. I am UNDETECTABLE!!!

Still having a lot of problems with the acid reflux disease as I can't take any meds for that (and I had a small arsenal) still have to on it for 5 more months, but it's looking really good, never thought I'd live to see the day!

Congratulations Audrey!!!! Here is to you success in stomping out that monster alien!

I have a hiatal hernia and get acid reflux on and off. Hadn't had a problem at all after starting Harvoni until around my 7th week of treatment. Lasted about 10 days and then was gone again. No rhyme or reasons for it but it was really hot. More so than I remembered. Maybe your's will get better too.

Finger crossed for you!

Thanks for sharing your good news!

Katie

Karen1124 · « **Reply #980 on:** February 07, 2015, 11:16:00 am »

This is day 3 of Harvoni. I read Ann's post about having cold hands and feet, I also have been cold which is very unusual for me. I can live with that! Lol! I also feel like I have more energy! Have a great day everyone! Karen

audreywald · « **Reply #981 on:** February 07, 2015, 03:35:48 pm »

If my grandson, Luke is deceased, I don't know if I can go on. He was "my person". Now I posted some really dumb stuff on Facebook and my husband is so mad at me I don't even know if he wants to stay with me. I do want to get well but I don't know if I have no one to take me to my Dr. appts as I am not allowed to drive right now. I am from Chicago but now live in a small town in Arkansas, which I dislike very much. But my 2 remaining grandsons are here as well as my daughter. My relationship with my daughter is pretty rocky sometimes so I don't think I could live with her even though I am pretty sure she would not let me be on the streets. I don't think it's the drugs or illness that have made me crazy, I think it's my grandsons disappearance that have loosened my screws.

Katie · « **Reply #982 on:** February 07, 2015, 04:43:57 pm »

Hi Audrey, I certainly don't know your situation other than what you've recently posted, but it wasn't that long ago you said you and friends who know Luke think he has just gone away. Hopefully he is OK and will show up for you so try and keep those positive thoughts.

Are the police aware of this and are they looking? You might want to contact them and ask if they have heard anything.

I am sorry you have this stress and if you talk to your daughter and explain what is going on so she understands the pressure and worry, she can be there for you. Maybe your husband just needs to clear his head. We all have ups and downs and are emotional when dealing with a serious illness and treatment and you can go into FB and delete posts. It sounds as if he has hung in there with you with other treatments and throughout this disease so he must understand how difficult all of this is for you. He must be worried about Luke too. Men react differently than women in most cases when there is a loss and not knowing is a horrible thing to go through. Communication is important and maybe your doctor can suggest someone to help you through this or maybe a good friend can help. Don't let depression set in and spiral down as without some support that can happen.

You've made great progress with Harvoni so try and let it continue to cure you and just get through each day with hope and determination.

I send healing thoughts for you and your family.

Katie

Mugwump · « **Reply #983 on:** February 07, 2015, 04:47:54 pm »

@audreywald
I can only tell you that HCV causes more than internal injury as the human body tells your mind that there is something terribly wrong. I know that even before I was diagnosed with HCV I knew there was something wrong and I experienced a constant feeling of being in danger. This led me to lose faith in others and do things that made sense to me but were in truth the wrong decision.

YES HCV infection can and does cause severe psychological problems as well as liver damage. It can cause mental aberrations that can make individuals do irrational things and lose the essential sense of security we all need to get along in society. When there is something wrong with your liver and your blood has an imbalance with toxins it certainly can cause imbalance in brain chemistry.

There are other ways that the infection can cause you to have mental instability. In my situation it actually caused long term increased levels of thyroid hormone by causing my immune system to attack my thyroid gland. This caused periods of mental instability for years before I even knew that I had HCV.

You have overcome the first hurdle to being free from this terrible disease keep up the fight against the disease for your sake as well as all who you love and love you! Try to put your life in a true perspective. Fear and uncertainty is hard to deal with so be certain that you are on the road to being free from a disease that certainly does cause more than just liver damage.

I truly understand what is happening and hope you find your way we are all pulling for you.

Eric

anniemybaby · « **Reply #984 on:** February 07, 2015, 06:34:46 pm »

I have a question I took my dose if harvoni and vomited about 2 hrs after do I need to worry bout what if I lost that dose

fllazylady · « **Reply #985 on:** February 07, 2015, 06:52:21 pm »

Hello Everyone happy weekend,
As you know after 12 weeks of treatment I am still detectable so they added ribavirin for the next 12 weeks with my treatment. I have had elevated blood pressure like 173/80 which is very unusual for me I tend to be normal or low and my heart is beating very fast. Has anyone else had this type of side effect from adding ribavirin to their treatment? Concerns me because today my left arm was hurting and my left leg for some reason and my boyfriend just had a stroke two months ago and it just making me a little leery. I will call my doctor on Monday just wondering if anyone else experienced this. $:-\$

Paulette
Fllazylady

Katie · « **Reply #986 on:** February 07, 2015, 06:53:05 pm »

I'm not sure but it seems it would have dissolved and gone into your system by then. Might depend on how much food was in your system too.

Maybe a moderator could answer this.

How are you feeling, Annie. Hope you aren't getting sick!

Katie

anniemybaby · « **Reply #987 on:** February 07, 2015, 09:24:36 pm »

Hi Katie I'm doing OK thanks for asking I'm just alittle tired of this whole battle and as for the vomiting not sure Dr prescribed me zofran for nausea I keep telling myself 4 more wks I hope your well have a good evening

Marijayne · « **Reply #988 on:** February 07, 2015, 10:19:50 pm »

I'm into my 2nd month and everything I read here I can relate too..not much to add that has not already been said.

I did see a Doc the other day and they did my BP 3 diff times and it was 170/100.
I have always had a BP of 120/80. I thought it may have been from the Pristiq but now I'm wondering if its the Harvoni. hmmm.
My mind still feels foggy and my energy level has not increased but I'm sure looking fwd for the day it does!

Deborah · « **Reply #989 on:** February 08, 2015, 02:43:12 am »

I finished treatment 3 days ago. I am noticing that I can now slack off on water a bit w/o the nausea and light headedness setting in, but still peeing alot. My sleep is still bad but the bad dreams and sweats seem to be tapering off. Energy seems to be more normal (less frenetic). The small side effects seemed to get worse the last week or two, but the finish line was a great motivator! I am anxious to see if my BP has started to drop back down, which I'm sure it will... With so many of us experiencing elevated BP, I believe it's important to report it as a side effect. (I told my doctor AND filed an FDA report online.) For some people this side effect could be serious but we seem to be the only folks who know about it! I will be back with the VL in a few weeks!

Katie · « **Reply #990 on:** February 08, 2015, 03:03:37 am »

Thanks for the update Deborah and congratulations on that last dreamsickle pill. I have 12 more pills to go. I felt great the first 8 weeks, in fact better than I had in years but for this last 2, I haven't felt nearly as good. My BP is fine, although normal, just slightly elevated, but my energy level bottomed out and my attitude has gotten a bit gloomy, more negative and edgy than usual and my urine still stinks, even when clear. I think I am saturated with Harvoni. Maybe that's good as the monster aliens won't find a place to hide! Death to all of them!!!

So I am looking forward to finishing up and will be right behind you!

Hope you keep improving and you have great news with your tests.

Please let us know how you are doing. It will be interesting to get some results. Since Harvoni came out so recently there isn't any SVR12 or SVR24 results and I want to check and see what they list the common side effects in say 6 months or a year. I bet the short list expands some.

Here's wishing you a great new start and a clean, long lasting cure and healthy new life!

Katie

kate0b1 · « **Reply #991 on:** February 08, 2015, 06:13:31 am »

@deborah, im a little jealous of being done lol, i just got bottle three yesterday and im happy/sad about it. I am so ready to be done this journey. @katie, i was just thinking last night about my energy level, i was feeling really well but boy my lack of motivation is not great. i am currently in the middle of painting my kitchen cabinets (really long story for another day lol how that came to be) and i could use some help staying on task. No headaches lately but my stomach has been bothering me, i don't know if the meds or just a stomach ache ! on the upside my pee has stopped smelling but now its a really strange green color (wait what lol). ugh AND i have to work this w/e

hope everyone has a good sunday
kate

Lynn K · « **Reply #992 on:** February 08, 2015, 06:23:30 am »

Congrats on finishing treatment Deborah!

I just received bottle 4 week lucky 13 of Harvoni and week 4 Ribavirin.

My last CBC says I am slightly anemic now after 2 weeks on Riba hemoglobin is now about 10 with 11.1 as low normal but this was expected. The exciting thing is my platelets are 148 and I haven't seen them over 90 in probably 5 years

Good luck to all

fllazylady · « **Reply #993 on:** February 08, 2015, 02:30:31 pm »

Wow keep up the good work Lynn. Waiting to see results from first week on Ribaviren n Harvoni combo. Been having issues with High BP. Calling on Monday about that. Can't seem to get under 160/75. Went for a walk and everything this morning trying to rest even resting the blood pressure is high been monitoring for four days now. Was this a problem for you? Other than that I really can't complain a little anxious..
Have a beautiful Sunday
Sending you light and love
Paulette

Katie · « **Reply #994 on:** February 08, 2015, 02:54:25 pm »

Quote from: kate0b1 on February 08, 2015, 06:13:31 am

i am currently in the middle of painting my kitchen cabinets (really long story for another day lol how that came to be) and i could use some help staying on task.

That is an ambitious project Kate! I am in remodel mode too. Probably wasn't a good thing to do while on treatment but I thought it would be completed before I started Harvoni. Then I hurt my back so I've been plugging away....ever so slow. Got the painting done, trim put up, closet clean out and the floor will be installed tomorrow. It sounds impressive but it was done with baby steps and I've been kind of stressed over having my house upside down. So once I can start putting everything back where it belongs and purging stuff I don't need anymore I should be able to relax. Clutter is bad for mental health and energy. Forcing yourself to accomplish things when your motivation isn't there is difficult and it really didn't get to me until about 2 weeks ago. I am not looking forward to having guys here, disrupting my routine but will be elated to have it completed. So weird and not like me. <BIG SIGH>

Here's to progress on projects! (I'd rather just go back to bed) HA!

Katie

oh...I would think the color comes from something you ate unless it continues.

Tpropane · « **Reply #995 on:** February 08, 2015, 11:40:27 pm »

Someone else posted here about swollen lymph glands. I had one in my right groin for a few days. Not too bad. It went a way on it's own. Now I have another under my left jaw. A little more irritating. If not gone in a day or so I'll call my doctor. But when I think about it, HCV is in the blood and has invaded the lymphatic system and every other part of m body. It's bound to work hard and adding extra burden to other systems working to eliminate it. In my case my kidneys (washing with lots of water) seem to be functioning great. To be a little gross, every time I flush I picture flushing HCV down the toilet and saying good riddance. Also I have, like someone else here, had some very hard stools. A lightly steeped cup of Smooth Move herbal tea at bed time seems to do the trick. Plus a BIOK rice vanilla super probiotic on an empty stomach 1 hour before my morning Harvoni. Don't want to treat any of the sfx with drugs as they aren't that bad. Using super healthy low fat, low sodium, mostly vegetarian diet with a little lean meat or the occasional egg or yogurt. Otherwise I'm a million times better than the old treatment and not suffering at all. Completely manageable. Every corner of my body is helping clear the virus since my liver isn't currently working all that well.
Yawn. Someone else said more sleepy than fatigue. I also kind of agree with that.
Night Peeps.
Sweet dreams of health.

Katie · « **Reply #996 on:** February 09, 2015, 01:13:32 am »

Hi Tpropane,

Personally, I wouldn't use Smooth Move as Senna can be harmful to a damaged liver if used often. I prefer to not take that chance or to give my liver anything extra to deal with while on treatment. I munch on dried prunes, eat beans in soup or chili once a week and make low sugar oatmeal cookies with dried fruit, coconut and pecans for a tasty, high fiber snack. Flax seed is also an excellent source of fiber and I'll put that in everything and it is especially good in rice.

My pharmacist did tell me Milax (over the counter laxative) does not go through the liver. It goes from the stomach directly to the bowels and out and does work good, just give it time to work and don't over do it. I only used it once to get things moving and now control the problem with my diet.

Just my opinion and sharing what I do. I've had chronic constipation for years and control it that way.

Sleep tight and glad you are doing well. I am too with 17 days left of the magic pill! YAY!

Katie

Mugwump · « **Reply #997 on:** February 09, 2015, 08:52:14 am »

Katie and Tpropane;'
Oh boy the gory details, yes I also have had the "hard rock" problems that is only relieved at the end of the concert when the smoke clears!

What has helped me the most is a good bowl of old fashion gruel in the morning made from whole grain steel cut. There is a reason why the Scots like to wear man skirts and I suspect it comes from eating too much oats and the fact that pants are way too slow!

https://www.youtube.com/watch?v=yThLhbmdNUs

Ruthie · « **Reply #998 on:** February 09, 2015, 09:09:30 am »

After taking my first Harvoni last night, it did make me very sick to my stomach. I wasn't surprised because everything hurts my stomach. I took some phenergin. I already take it for stomach problems.

I had a little headache, but not bad. My right kidney has a few stones, so it was a little achey after the pill. I drank more water for my head and kidney. Then I put the heating pad on my kidney for a bit and it was fine.

From reading this forum, I knew to drink a ton of water. I made chicken and vegetable soup for the week-good nutrients plus liquid. I drank a good 48 oz of water last night.

I do have a bit of a headache this morning, but I may be getting a migraine.

TY for all the tips and discussion so I knew what to expect and how to deal with things!

Mugwump · « **Reply #999 on:** February 09, 2015, 10:39:03 am »

Quote from: Ruthie on February 09, 2015, 09:09:30 am

After taking my first Harvoni last night, it did make me very sick to my stomach. I wasn't surprised because everything hurts my stomach. I took some phenergin. I already take it for stomach problems.

Great to hear you are on the route to UD Ruthie! In your situation it might be a good idea to eat something mild and easy on the stomach when you take the Harvoni, there is no recommendation against eating a small amount when taking the pill.

In my situation it is completely different, because I take thyroid meds it is better if I do not eat anything substantial at the same time as taking the thyroid med especially foods that load up the digestive system with carbohydrates.

I am lucky I have a cast iron pit down there and taking the Harvoni and my thyroid med with just some water and say a small bowl of cereal or one piece of toast in the early morning when my system will quickly ingest food seems to be the ticket. Then I wait about 3 hours before eating anything over about a hundred calories in food value.

Best wishes and may your treatment be as easy as mine has been!

Eric

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