Author Topic: Harvoni Side effects (Read 2190137 times)

UndetectableC · « **Reply #200 on:** December 03, 2014, 10:43:13 pm »

Quote from: mario555 on November 25, 2014, 08:08:21 am

I'm only on my second week with Harvoni and I can't sleep!!! I tried taking the pill at 9 pm before going to bed and I get a kind of ''heat puff'' up to 2-4 hours after taking the medication. I can't fall asleep while ''puffing''. I then tried to take the medication earlier (6 pm) and now I just can't sleep!
Anyone of you who encountered this side effect at the beginning of treatment? Does it go down in intensity or does it increases?
I haven't experienced 'brain fog' or tiredness (after 2 weeks) but I'm just buzzed out and can't seem to have a full night of respite. PLease give me your tricks if you have any because I'm on a 24 weeks treatment and I don't really want to wait 22 more weeks to sleep!

Some suggestions:
Massage before sleeping, if possible. Hot bath or shower before bed. Warm milk or herbal tea. Read a boring book or watch a droning documentary. Deep breathing that simulates sleep breathing helps calm my body down for sleep. If you have a partner that can sleep, mimic their breathing.

I drink loads of coffee which probably doesn't help w/ sleeping, but I have had very few headaches. I'm on week 5 now. I've gotten the 'heat puff' and clammy skin (I call them flushes because they remind me of hot flashes minus the sweats) since about the 3rd day on Harvoni- always after I take it, and still get it. I get random flushes, too.
I also had a burst of energy at first. By week 3 I was irritable and spacy- probably from fatigue. In week 4 I crashed and got more sleep. I've taken a few naps, too since then. This has been the best week, so far for SEs. Maybe I'm getting used to it. The worst of it is hopefully behind me.
Hope this helps. Wishing you a speedy treatment! May the weeks fly by!

goodbyehepc · « **Reply #201 on:** December 03, 2014, 11:08:14 pm »

Hello
I'm happy to report NO detection of virus after four weeks of Harvoni. Blood results are stellar with everything normal except slightly high is Lymphocytes. Has anyone experienced the same?

Also my Iron is also high which is strange but maybe something I ate that week?

Thanks
GHC

dragonslayer · « **Reply #202 on:** December 03, 2014, 11:50:41 pm »

Its interesting to read how many people here seem to be having side effects from Harvoni compared to those in the trials which show that those experiencing side effects were in the great minority.

To wit, from the 12 wk cohort, side effects are as follows. Out of 539 participants:

Fatigue 13%
Headache 14%
Nausea 7%
Diarrhea 3%
Insomnia 5%

Lynn K · « **Reply #203 on:** December 04, 2014, 12:01:31 am »

Hi dragonslayer

Well if you consider the name of this post Harvoni side effects everyone is coming to this to post their side effects so it would be a skewed sampling not exactly a scientific survey to say the least.

I am on day 16 with nothing much to report just a couple of mild headaches which could have been sides of just a normal headache and I had some facial redness the first day or two.

So I am reporting in as no significant side effects.

Best to all the Warriors out there

dragonslayer · « **Reply #204 on:** December 04, 2014, 12:33:46 am »

Right, Lynn... The posters in This thread are not exactly an unbiased sample! Ive been on Harvoni for only 7 days and have experienced a few headaches and insomnia.. Guess what... I experience occasional headaches with or without Harvoni.. And insomnia? Have had that for years.... Plus which, on my second day of Harvoni, I started coming down with a pretty bad cold from which Im starting to recover which created a whole load of other possible Harvoni symptoms.. Hmmm... Which belonged to the Harvoni? which belonged to the cold? Im going with the cold as the major contributor. Hopefully, when it dries up, so will its attendant symptoms, leaving me with only the occasional headache and insomnia.. Which I had all along.. I used to think it was the HCV that was causing it... Who knows. I suspect Im just a lousy sleeper who gets headaches.

UndetectableC · « **Reply #205 on:** December 04, 2014, 12:59:24 am »

Quote from: dragonslayer on December 03, 2014, 11:50:41 pm

Its interesting to read how many people here seem to be having side effects from Harvoni compared to those in the trials which show that those experiencing side effects were in the great minority.

To wit, from the 12 wk cohort, side effects are as follows. Out of 539 participants:

Fatigue 13%
Headache 14%
Nausea 7%
Diarrhea 3%
Insomnia 5%

Those are handpicked patients, and not very many of them. A good many of them have been though much harsher treatments. I expect those numbers to change as more people are treated. It would be interesting to see the % of SE's reported by TX naive vs pts with previous treatment.
I agree that colds, aches and such are an everyday part of life. However, I've now lost 10lbs without trying very hard. Others have reported weight loss, too. That's not listed up there. If you look at the Sovaldi side effects, some of them are being reported in this thread which makes sense since Sovaldi is in Harvoni. Just my 2cents.

Lynn K · « **Reply #206 on:** December 04, 2014, 02:31:49 am »

Sure I agree and maybe that is why nothing much bothers me I have never been sensitive to meds and no known allergies. Plus I did multiple attempts with interferon so I guess I am fortunate and battle scarred veteran.

I also didn't have any sides worth noting while I was taking Sov Oly for 12 weeks from March to June.

Guess I am just a tough old bird. Also I wish I could lose 10 pounds actually 20 would be perfect I will send them your way. Just kidding sorry it is tough on you like I said guess I am fortunate not to have sides.

Lynn

elizabethfaraone · « **Reply #207 on:** December 04, 2014, 08:28:15 am »

I can feel how strong this medicine is and it has to be to kill this virus. Although I am doing well on the third day, I am much more tired and achy than usual and I feel disconcerted and more foggy brained. But the real tell is when I look in the mirror. My face is totally drained of color and I have very dark circles under my eyes. All of that said, I love this medicine and am so happy to finally be treated with it. I came to this forum on side effects before I started the medicine so that I could post the side effects I might experience. If every patient honestly reported their side effects, we would have a better picture and be able to prepare patients to be able to deal with the possible side effects. From day one, I've taken 400 mg of Tylenol along with the Harvoni (I normally don't take pain killers, but since I was having pain BEFORE I started the Tylenol, I figured I should start taking pain killers). I've avoided pain killers because I understand the stress it puts on the liver, but while I'm taking this medicine and feeling achy, I will continue to use the Tylenol.

fllazylady · « **Reply #208 on:** December 04, 2014, 08:40:31 am »

We all are having some sides but nothing we can't handle to be free of HepC...
For those having trouble sleeping switch your dose time to AM.. I love the energy I am getting from the Harvoni...why take it at night?

I welcome this new found energy..
I'm doing more now than I did before in the daytime.. Use it to your advantage..
Sending you all Light n Love this Holiday Season..

mario555 · « **Reply #209 on:** December 04, 2014, 08:48:58 am »

I would guess that if all the Harvoni users would report their side effects, we might not be a very representative group because most of us are battle hardened and we're most probably much more in tune with our bodies and side effects than the regular population.
It is hard to tell if some of my side effects are Harvoni related or just good old shitty days.... What is coming out though is that Brain fog and headaches seem to be common. Lack of sleep plagues us but most are experiencing bouts of increased energy.
It's too bad Hep Mag doesn't have the funds needed to be able to capture our side effects and lab results (and eventually our cured rates) and put those in a worksheet. We'd then have actual life statistics that could help future patients evaluate what's really happening with the medication.

goodbyehepc · « **Reply #210 on:** December 04, 2014, 09:05:27 am »

Quote from: elizabethfaraone on December 04, 2014, 08:28:15 am

I can feel how strong this medicine is and it has to be to kill this virus. Although I am doing well on the third day, I am much more tired and achy than usual and I feel disconcerted and more foggy brained. But the real tell is when I look in the mirror. My face is totally drained of color and I have very dark circles under my eyes. All of that said, I love this medicine and am so happy to finally be treated with it. I came to this forum on side effects before I started the medicine so that I could post the side effects I might experience. If every patient honestly reported their side effects, we would have a better picture and be able to prepare patients to be able to deal with the possible side effects. From day one, I've taken 400 mg of Tylenol along with the Harvoni (I normally don't take pain killers, but since I was having pain BEFORE I started the Tylenol, I figured I should start taking pain killers). I've avoided pain killers because I understand the stress it puts on the liver, but while I'm taking this medicine and feeling achy, I will continue to use the Tylenol.

It gets better after a week. Trust me those side effects are just your body processing the medicine. YOu will slowly get jolts of energy and then the side effects change. I too have gotten circles but I am undetected of the virus since week four. And I still take it and I don't feel like I"m taking anything.

art1951 · « **Reply #211 on:** December 04, 2014, 09:07:00 am »

I am going to take fllxlady's suggestion and move my dosage to the morning. I have already moved my blood pressure medications to the morning and it seems to work better.
I am on week 7 and am feeling much better and starting to exercise again. I do have lots of energy in the morning but start getting fatigued around 2:00 on. Hopefully moving the Harvoni to the morning will also resolve that.
I am looking forward to the possibility of weight loss and need to drop 20 pounds or so.
Thanks for all the encouragement on this site. I started this thread as a newbie because most of the apprehension that I was having was not knowing what Harvoni would do to my life and was looking for a good place to go for reference. I wanted to share my experience so that others would have something to refer to. It has been a huge help to me to hear others stories good and bad. I don't have anyone outside this forum that is actually going through the same problems and they don't understand the depths of the issues that you are going through.

Thanks for listening,
Art

goodbyehepc · « **Reply #212 on:** December 04, 2014, 09:13:28 am »

Quote from: art1951 on December 04, 2014, 09:07:00 am

I am going to take fllxlady's suggestion and move my dosage to the morning. I have already moved my blood pressure medications to the morning and it seems to work better.
I am on week 7 and am feeling much better and starting to exercise again. I do have lots of energy in the morning but start getting fatigued around 2:00 on. Hopefully moving the Harvoni to the morning will also resolve that.
I am looking forward to the possibility of weight loss and need to drop 20 pounds or so.
Thanks for all the encouragement on this site. I started this thread as a newbie because most of the apprehension that I was having was not knowing what Harvoni would do to my life and was looking for a good place to go for reference. I wanted to share my experience so that others would have something to refer to. It has been a huge help to me to hear others stories good and bad. I don't have anyone outside this forum that is actually going through the same problems and they don't understand the depths of the issues that you are going through.

Thanks for listening,
Art

Hey Art,
You know I was going to move mine to morning, my plan was to take it an hour or so earlier each day but then my body got used to it and now I don't really have any side effects. That 2PM nap was usual for me for so many years but now I get tired at the end of the day like 7 PM I need to lie down. I think it will get better. Right now I'm week five and was undetected on week four. I do rest of December and then January and will be done in February 1st! I'm glad to hear you will start exercising you will actually feel better as a result and you may even find it easier than ever on the treatment. Good luck
GHC

art1951 · « **Reply #213 on:** December 04, 2014, 09:40:20 am »

GHC,
If I had the ability to take nap at 2:00 I would be doing fine. I seem to recover quickly with a little rest. I think I can manage this and it is getting better each week. I work from 7 am till 5:30 each day. I had thought about going home at lunchtime and resting but no longer feel it is necessary.

I do have additional energy now and am not sure if that is just because I am returning to normal or a side benefit of the Harvoni. It does feel like my body is no longer having to fight the hep-c and I seem to be healing more quickly from infections etc.

Thanks,
Art

elizabethfaraone · « **Reply #214 on:** December 04, 2014, 09:45:57 am »

Quote from: art1951 on December 04, 2014, 09:40:20 am

GHC,
If I had the ability to take nap at 2:00 I would be doing fine. I seem to recover quickly with a little rest. I think I can manage this and it is getting better each week. I work from 7 am till 5:30 each day. I had thought about going home at lunchtime and resting but no longer feel it is necessary.

I do have additional energy now and am not sure if that is just because I am returning to normal or a side benefit of the Harvoni. It does feel like my body is no longer having to fight the hep-c and I seem to be healing more quickly from infections etc.

Thanks,
Art

On day 2 of taking Harvoni, I noticed that the many tiny, hard "pimples" that I've had on my torso and arms since February are disappearing quickly. I suspected they were due to the advancing of my Hepatitis C and I guess I was correct.

art1951 · « **Reply #215 on:** December 04, 2014, 11:41:52 am »

Quote from: goodbyehepc on December 03, 2014, 11:08:14 pm

Hello
I'm happy to report NO detection of virus after four weeks of Harvoni. Blood results are stellar with everything normal except slightly high is Lymphocytes. Has anyone experienced the same?

Also my Iron is also high which is strange but maybe something I ate that week?

Thanks
GHC

GHC,

Great news on being undetected!!!
My 4 week tests showed
ABSOLUTE LYMPHOCYTES 2075
LYMPHOCYTES 24.7
Overall my blood work looked fine, I did not see a test for iron.

Thanks,
Art

John3333 · « **Reply #216 on:** December 04, 2014, 12:08:30 pm »

Hi guys. I am new to the forum but have been reading it for quite some time. I have been approved for Harvoni and will be getting my meds next Friday the 12th. I have CVS Caremark but my doctor wanted the meds shipped to him instead of directly to me. I am excited because I didn't think I would be approved.

I was diagnosed with Hep C in 2001, and i suspect I contracted it in or around 1990. I am genotype 1a. Back in 2002 I had a liver biopsy where I was stage 1 with a Knodell score of 6 which indicated mild inflammation. I did the 48 weeks of tx hell to no avail. My liver enzymes are moderately elevated, I have no symptoms other than occasional fatigue. This could be due to the hep C or having a 4 year old and 6 year old at my age, (50) plus a very stressful job, LOL. I am physically fit and try to eat right, and from 1995 until present I have not used alcohol.

I want you guys to know that the information you post helps a lot of people, even if they are not active in the forum. I learned a great deal from you guys and Lucinda, and i am glad and grateful that you guys are out there posting your experiences. I am reading the different reactions that everyone has had to the Harvoni, and I figure that if I could make it through the 48 weeks of tx hell, I should have no problem with 12 weeks of this stuff. My only fear is irritability being I have small children.

Thanks to all and keep fighting!!!

Galeygirl · « **Reply #217 on:** December 04, 2014, 02:04:16 pm »

Hi everyone. I've been on Harvoni for 5 weeks. My liver enzymes are normal as of 4 weeks of treatment. I am 1a with no cirrosis and minimal fibrosis. I've had all the listed side effects of Harvoni and then some for the whole time. Although they note diarrhea, they don't mention the cramping that accompanies it. And along with the nausea comes vomiting. I saw a post here from someone that weighs 100 pounds and has all the side effects too. I also am around 100 pounds, so I'd be curious to know the weights of people who have the worst side effects. I've also had my gall bladder removed (thank you riba/peg). Even though the percentages of people with side effects are low, it is still 3-14 people out of 100... Some of us are just lucky that way!! I will say that it is nothing compared to treatment with ribavirin and interferon so I refuse to complain! Just stating the facts

John3333 · « **Reply #218 on:** December 04, 2014, 02:21:48 pm »

Quote from: Galeygirl on December 04, 2014, 02:04:16 pm

Hi everyone. I've been on Harvoni for 5 weeks. My liver enzymes are normal as of 4 weeks of treatment. I am 1a with no cirrosis and minimal fibrosis. I've had all the listed side effects of Harvoni and then some for the whole time. Although they note diarrhea, they don't mention the cramping that accompanies it. And along with the nausea comes vomiting. I saw a post here from someone that weighs 100 pounds and has all the side effects too. I also am around 100 pounds, so I'd be curious to know the weights of people who have the worst side effects. I've also had my gall bladder removed (thank you riba/peg). Even though the percentages of people with side effects are low, it is still 3-14 people out of 100... Some of us are just lucky that way!! I will say that it is nothing compared to treatment with ribavirin and interferon so I refuse to complain! Just stating the facts

Hi Galeygirl.

I am home today with my sick daughter, so I have been reading all the threads. I am sorry you are having so many side effects. I am a little nervous myself about starting the meds. Do you get irritability? That's my biggest concern, I don't want to be going off on the kids LOL. Remember, you don't have to much longer to go, so hang in there! Think about how bad the ribs/peg was, after that, you can survive anything for a couple more weeks. Good Luck!

Galeygirl · « **Reply #219 on:** December 04, 2014, 03:46:21 pm »

Not anymore irritable than just what I was from the Hep c!!

Rubye · « **Reply #220 on:** December 04, 2014, 06:24:17 pm »

GaleyGirl, trust me, bad side effects are not limited to small people. I am big at 5'9" and 180 lbs and have had a terrible time on the S/O. I know you're on Harvoni, but people were saying the same thing about S/O and the bad side effects are because a person is small. I know others who are not small and some have had bad sides. It does seem to me though that women have more sides than men. I hope you feel better soon.

UndetectableC · « **Reply #221 on:** December 04, 2014, 06:34:19 pm »

Quote from: John3333 on December 04, 2014, 12:08:30 pm

Hi guys. I am new to the forum but have been reading it for quite some time. I have been approved for Harvoni and will be getting my meds next Friday the 12th. I have CVS Caremark but my doctor wanted the meds shipped to him instead of directly to me. I am excited because I didn't think I would be approved.

I was diagnosed with Hep C in 2001, and i suspect I contracted it in or around 1990. I am genotype 1a. Back in 2002 I had a liver biopsy where I was stage 1 with a Knodell score of 6 which indicated mild inflammation. I did the 48 weeks of tx hell to no avail. My liver enzymes are moderately elevated, I have no symptoms other than occasional fatigue. This could be due to the hep C or having a 4 year old and 6 year old at my age, (50) plus a very stressful job, LOL. I am physically fit and try to eat right, and from 1995 until present I have not used alcohol.

I want you guys to know that the information you post helps a lot of people, even if they are not active in the forum. I learned a great deal from you guys and Lucinda, and i am glad and grateful that you guys are out there posting your experiences. I am reading the different reactions that everyone has had to the Harvoni, and I figure that if I could make it through the 48 weeks of tx hell, I should have no problem with 12 weeks of this stuff. My only fear is irritability being I have small children.

Thanks to all and keep fighting!!!

I think the irritability is from the insomnia. Maybe napping with them will help?

sunrise · « **Reply #222 on:** December 04, 2014, 07:45:03 pm »

Welcome to the forum. Wisbing you UD for good after tx. My side effects witbS/O has been anxiety which I tried to fight but gave in on my 7th week with klonapam. I do take 5 mg ambien at bedtime as I have to sleep so I can run my biz in the morning. Other that that, oh lets not forget weight gain. Ive gained 35 lbs since tx started! Other than tbat its been pretty good. Best of luck on your journey.....17 days to go!

scared of meds · « **Reply #223 on:** December 05, 2014, 12:07:16 pm »

Ok I have been approved by my insurance company to receive Harvoni. I am so scared as I have always been into holistic health. I do want to rid my body of this disease but I am afraid of the residual effects of the medication. I hope to hear from someone as I am afraid of not being in control and that in itself is an oxymoron. I hope you are all doing well.
Thanks,
Margo

Galeygirl · « **Reply #224 on:** December 05, 2014, 12:14:38 pm »

There are some side effects with Harvoni, but nothing that can't be handled. It is nothing like the prior treatments with Interferon.

scared of meds · « **Reply #225 on:** December 05, 2014, 12:20:37 pm »

Thanks, I appreciate your encouragement. I am sure I will be ok, it is just a bit unnerving for me, but at the same time I hear of people having more energy shortly after taking Harvoni so I am going for it.
Thanks again,
Margo

sunrise · « **Reply #226 on:** December 05, 2014, 02:34:49 pm »

Hi Mario
Hope you get thru tx easily. Find out from your doc what supplements you can take. You have to be careful with interactions so definitely ask. I have to be really careful as Olysio has so many. Ypu will be fine as harvoni is the latest and greatest of txs. I had to try s/o first and if I relapse I will definitely do harvoni. It beats keeping this terrible virus in my body hands down! Best wishes

sunrise · « **Reply #227 on:** December 05, 2014, 02:35:45 pm »

Sorry typo I meant Margo

UndetectableC · « **Reply #228 on:** December 05, 2014, 04:01:25 pm »

Quote from: scared of meds on December 05, 2014, 12:07:16 pm

Ok I have been approved by my insurance company to receive Harvoni. I am so scared as I have always been into holistic health. I do want to rid my body of this disease but I am afraid of the residual effects of the medication. I hope to hear from someone as I am afraid of not being in control and that in itself is an oxymoron. I hope you are all doing well.
Thanks,
Margo

Hi Margo
I tend towards the holistic approach myself and rarely take any meds unless I absolutely must.
There's never been a shorter course of treatment available than right now. It acts so quickly that many people report feeling better within the first few weeks. People are breezing through treatment with minimal side effects and you will, too.

nicole_1234 · « **Reply #229 on:** December 05, 2014, 06:58:39 pm »

Hi. I'm new to the forum. On day 3 of Harvoni. I am non cirrhotic, treatment experienced (48 weeks of Peg/Interferon in 2007) so my TX is 12 weeks of Harvoni.

I have no idea what my viral load is and my last Liver Function Panel was in September showing ALP 57 ALT 55. I've probably had the virus for about 15 years.

From the looks of this feed it seems many are still trying to get the drug so I am very grateful to have gotten it and to be able to share my side effects. They are nothing compared to the interferon/ribavirin evil duo and just knowing it's 12 weeks instead of 48 is so much easier to tolerate (they asked me to go 72 weeks on interferon because I was a slow responder and I just couldn't).

However, I am experiencing an upset stomach, not nausea or cramping, just rumbling discomfort almost as if I hadn't eaten anything in 24 hours or something. I take the pill at noon and the stomach problems begin after dinner. I haven't slept well the first two nights. Partially because of my stomach and partially because I feel very wired and anxious. I am trying to stay really positive and also take it easy this first few days. I'm sure my mind and body are getting used to it and will calm down and settle in soon. This feels like an easy choice and one I am glad I have been able to access this drug. Praying it works.

Despite that, these side effects are definitely tolerable so I hope everyone here that wants it gets to have it. And whether it works for me or not, I will advocate for others to get it in any way I can. It seems very unfair that they have made this so expensive.

Bucky · « **Reply #230 on:** December 05, 2014, 07:34:12 pm »

Quote from: nicole_1234 on December 05, 2014, 06:58:39 pm

Hi. I'm new to the forum. On day 3 of Harvoni. I am non cirrhotic, treatment experienced (48 weeks of Peg/Interferon in 2007) so my TX is 12 weeks of Harvoni.

I have no idea what my viral load is and my last Liver Function Panel was in September showing ALP 57 ALT 55. I've probably had the virus for about 15 years.

From the looks of this feed it seems many are still trying to get the drug so I am very grateful to have gotten it and to be able to share my side effects. They are nothing compared to the interferon/ribavirin evil duo and just knowing it's 12 weeks instead of 48 is so much easier to tolerate (they asked me to go 72 weeks on interferon because I was a slow responder and I just couldn't).

However, I am experiencing an upset stomach, not nausea or cramping, just rumbling discomfort almost as if I hadn't eaten anything in 24 hours or something. I take the pill at noon and the stomach problems begin after dinner. I haven't slept well the first two nights. Partially because of my stomach and partially because I feel very wired and anxious. I am trying to stay really positive and also take it easy this first few days. I'm sure my mind and body are getting used to it and will calm down and settle in soon. This feels like an easy choice and one I am glad I have been able to access this drug. Praying it works.

Despite that, these side effects are definitely tolerable so I hope everyone here that wants it gets to have it. And whether it works for me or not, I will advocate for others to get it in any way I can. It seems very unfair that they have made this so expensive.

Hi Nicole,
It could take a week or so for your stomach to settle down. I was treated with S&O and snacked all day on healthy liver friendly foods. I also took my meds with food and don't forget water, water, water. This quelled the digestive problems that I was having.
Bucky

scared of meds · « **Reply #231 on:** December 05, 2014, 11:19:48 pm »

Thanks Sunrise for your reply. I will probably start Tuesday. I am going to take the plunge and hope and pray for the best. I can not tell you how much I appreciate the support of this forum.
Thanks again,
Margo

sunrise · « **Reply #232 on:** December 05, 2014, 11:53:16 pm »

Margo you're going to do so good. Try not to be scared. These nes medications are really well tolerated for most. Especially since you are not cirrhotic. I know that with s/o tx is is very important to eat with meds. The nurse for Gilead in class told us with sovaldi it didn't matter. Not the case with olysio, it is VERY important to eat. I have never expwrienced nausea nor diarrhea with thea meds. I alwaus take mine around 5 or 6 pm with a meal. Keep the faith.Margo. Courage is not lack of fear, it is the strength we have inspite of fear. Go slay this dragon Margo!

gea · « **Reply #233 on:** December 06, 2014, 06:58:51 am »

Day 20 on Harvoni and I am happy to report that I really don't have ANY side effects ! When I read some of your posts, I think, "oh yeah".... Agitation perhaps more than normal, feel cold or hot more than usual.... runny nose? Is that one here? But that could just be the lovely weather we are having! I still seem to sleep normally and no headaches, but then, I have always been a lucky one and never experienced headaches in my life.... This medicine is SWEET ! Sorry for all of you that are experiencing side effects, hope twelve weeks goes quickly for you! SVR is wished to all for Christmas! :-)

BattleTheBeast · « **Reply #234 on:** December 06, 2014, 07:11:50 am »

Gea,

That's awesome news and I hope I am as lucky as you have been when I start Harvoni, my body sure didn't like the Olysio!!

Hope you remain side free and kill the beast for good within!!

~Mel~

gea · « **Reply #235 on:** December 06, 2014, 07:45:38 am »

Thanks Mel ! From what I have read about your encounter with Olysio, you are gonna LOVE Harvoni ! It's all good !
G

BattleTheBeast · « **Reply #236 on:** December 06, 2014, 07:54:17 am »

Crazy me has been up all night again, now I'm debating if I should hold off on the S/O and wait for the Harvoni to arrive.... Btw I am at exactly 8 weeks on S/O as of yesterday and have brand new bottles sitting here. I really don't want to open them in the hope that they can go to someone less fortunate, not everyone has the insurance I do and I'm actually very fortunate.

~Mel~

gea · « **Reply #237 on:** December 06, 2014, 08:03:40 am »

Mel, you sound like me with what I call "survivor's guilt".... I was upset that my specialty pharmacy had me approved for the $5 co-pay ! I actually WANTED to pay my normal co-pay for Harvoni ! My heart bleeds for those on this forum that have to fight for the medicine, have gone thru years of treatment that was so difficult, have experienced relapse on lesser drugs.... But, as someone well put it, it is not a competition, it's an experience for each of us... And some have an experience better than others, but hopefully will still all get to the same end result... SVR !

icantwait · « **Reply #238 on:** December 06, 2014, 08:46:02 am »

Hi All, I am another one that just got the approval FAX for Harvoni from Express Scripts after the usual run around and countless phone calls. I understand the huge economic issue that the price of the drug is causing and I am thankful to get the approval. I will feel better when it is in my hands next week. I have had the disease for over 30 years along with the chronic disease of severe alcoholism. I have been sober for three years and hoped I had dodged a self inflicted bullet. I bounced back from viral loads literally off the chart, horrible skin, having two TIA's(scary losing all language comprehension), Porphyria Cutanea Tarda(PCT) and generally poor health from drinking two liters of vodka a day for decades. I never pursued any treatment for my hep C as I did not want to take away resources from those that needed them when I was still drinking. About 6 months ago, at 58, the hep C started taking off. I now have spider veins, edema in the legs, red palms, nausea and fatigue. I am F3, VL 3.1 Million and my macroglobulin is 493(thick blood). I am keeping my fingers crossed and hope that I will not have many side effects from the medication. It probably won't be any worse than the hangovers I had every morning for years. I will accept what ever happens and today, I am grateful for another day of life and what it will bring. Thanks to all for sharing you experiences and hopes here.

BattleTheBeast · « **Reply #239 on:** December 06, 2014, 09:02:32 am »

Icantwait,

Welcome and congratulations on your sobriety! I hope your road to Undetected is as easy as possible.

Your new life is just beginning!

~Mel~

mario555 · « **Reply #240 on:** December 06, 2014, 09:33:04 am »

Welcome to you ''Icantwait''. Count yourself lucky that you took action before it was too late! You sure ran yourself hard for all those years (many of us can relate to that...) but you now have Harvoni which should make you feel a bit better in the days following your first pill!!! Don't even worry about side effects because most of us have been through Peginterferon and Riba and that was hell... This is why we are a bit scared about this new treatment. Most of us are in a state where medication can only improve us, the alternative being not so rosy. We're born in perfect timing because of all the new advances with Hep C. So, good luck and continue to stay away from your old buddies. Don't forget; People, Places and Things!!! (the ones who went through AA or NA will know what this is about...)

John3333 · « **Reply #241 on:** December 06, 2014, 10:36:37 am »

gea, I feel the same way. I figured I would get denied and I was ready to fight, but I was approved with a 5 dollar co-pay as well. I was thrilled but I felt guilty also. It's so unfair that some can get the meds but others can't. I get the meds this coming Friday as they are being shipped to my doctor. I think I am going to take flazylady's advice and take the pill in the morning when I get up.

ican'twait, I wish you all the luck in the world! Take it one day at a time this medication is going to save your life.

fuzzy72 · « **Reply #242 on:** December 06, 2014, 10:53:18 am »

Hello, I am newly diagnosed and will start Harvoni today. I am a 54 yr old female, RN for 28 years, worked in critical care. Not sure but believe I may have contracted this disease in the 80's from a needle stick. Anyway, I have cryoglobunemia, lichen planus, and biopsy shows grade 2 stage 4. Viral load six million, genotype 1. Does anyone know if the cure rates are affected by the cryo? I find very little info on that.

nicole_1234 · « **Reply #243 on:** December 06, 2014, 11:59:30 am »

Day 4 on Harvoni and last night I finally slept and didn't wake up with an awful headache. Before bed I gave my self a 20 min "abyanga" self massage with warm sesame oil, it's an ayurvedic practice I highly recommend. Then I took a hot bath. I also drank a ton of water yesterday. Really helped with everything and I feel rejuvenated. Also I have been reading that for some the body adjusts after a couple days so perhaps it's that as well. Feeling less anxious today as well.

BattleTheBeast · « **Reply #244 on:** December 06, 2014, 12:10:04 pm »

Quote from: nicole_1234 on December 06, 2014, 11:59:30 am

Day 4 on Harvoni and last night I finally slept and didn't wake up with an awful headache. Before bed I gave my self a 20 min "abyanga" self massage with warm sesame oil, it's an ayurvedic practice I highly recommend. Then I took a hot bath. I also drank a ton of water yesterday. Really helped with everything and I feel rejuvenated. Also I have been reading that for some the body adjusts after a couple days so perhaps it's that as well. Feeling less anxious today as well.

That's so great Nicole! I am going to Google your abyanga message you mentioned. I love essential oils and they help to keep me a little calmer when I feel like falling apart. So glad you are adjusting so quickly!

Mel

nicole_1234 · « **Reply #245 on:** December 06, 2014, 12:43:39 pm »

Quote from: BattleTheBeast on December 06, 2014, 12:10:04 pm

That's so great Nicole! I am going to Google your abyanga message you mentioned. I love essential oils and they help to keep me a little calmer when I feel like falling apart. So glad you are adjusting so quickly!

Mel

Yes Mel, check it out. http://www.chopra.com/ccl/the-benefits-of-ayurveda-self-massage-abhyanga And thank you!

Doluska · « **Reply #246 on:** December 06, 2014, 02:07:29 pm »

Hi Fuzzy! Welcome to the RN's hepc club. I am 56 y.o. And live in Canada. Practiced nursing in 3 country's, glad that I am in Canada, but here it is not so easy to get to new med's. I am on s/o+ RIBA for 12 weeks. I'd've felt better if I could have it for 24 weeks, but nobody going to pay it here, health Canada didn't approve it. My hope for Harvoni for 12 weeks to continue and kill the virus forever, but I not going to be worried about it now. Good luck for your treatment, and ask Lucinda if you have any concerns, she is a grate record and very supportive. D.

gea · « **Reply #247 on:** December 06, 2014, 02:22:32 pm »

@ John3333, I take mine (day 20 now) early in the morning, with about 16 ounces of water, something light to eat, and my coffee. Then I continue to hit the water throughout the day, probably consuming about 40 ounces. I thought perhaps if it were going to cause insomnia, it would not be as likely taking it early in the day

I have, as previously talked about, had no side effects, although, I believe Linda states that her headaches began at week four..... fingers crossed !
G

mario555 · « **Reply #248 on:** December 06, 2014, 02:52:54 pm »

I would not think the cryobulemeia (ouf... Not sure of the spelling..) should not affect the cure rate with Harvoni because that disease is caused by hep c in many cases. Actually I would guess taking Harvoni will "improve" that problem. I read (Wikipedia) that 35 % of hep c sufferers have that problem. So good luck and please let me know if you find that symptom has improved after 1 full week of Harvoni.

John3333 · « **Reply #249 on:** December 06, 2014, 08:08:46 pm »

@gea, thanks for the information. The people that post on here, I don't think they know how much it has helped people like me who are getting ready to follow their path. It's good to know what others have experienced. Glad you have no sides.

fuzzy72 · « **Reply #250 on:** December 07, 2014, 09:26:28 pm »

Day 2 of Harvoni, I take it early and drink water all day. So far so good. Keeping a positive attitude as best I can. I do believe it helps. My husband is also positive but no extra hepatic complications. Hopefully, they will approve him to start in January. He is retired now but was a RRT. We've got too much living to do to let this win!

sunrise · « **Reply #251 on:** December 07, 2014, 09:34:37 pm »

You will be fine fuzzy. Im on sovaldi olysio combo with minor side effects. You will coast thru it. Harvoni from what I'm reading is really amiracle. Best of luck. it sounds like you're off to a good start. I have 13 more days on my 3 month treatment. Wish me luck I hope for undetected forever...enjoy your time enjoy your holiday best wishes sunrise

nicole_1234 · « **Reply #252 on:** December 07, 2014, 09:37:03 pm »

Day 5 into Harvoni. I had a horrible anxiety attack last night accompanied by lots of uncontrollable crying. I do have a history with anxiety but I haven't had an attack like that in over 2 years so it felt related to the chemicals. Used to get them a lot on the peg/interferon treatment and for years after off and on. Since then yoga and meditation has helped a lot. But at this point I never know what's from the hepc, the treatment or just my biological makeup. Has anyone else had this? Before it happened I felt wired and edgy.

Afterwards I did a long guided meditation before I went to bed and I slept well. But I woke up in a sullen mood. Yesterday in the daytime I had been extremely happy. Anyway, trying to stay grounded and positive. Feeling mood swings and don't know if it's just me or the Harvoni.

sunrise · « **Reply #253 on:** December 07, 2014, 09:57:25 pm »

Hey Nicole
I am on S/O treatment and yes I suffer from anxiety.it did intensify during this treatment. I did wind up getting some klonopins about my 7 week in. I really tried to do it without but it was becoming very hard. Talk to your doctor if you need to don't feel embarrassed because if you need the help you'll get it. just try to take things easy you'll be fine. I do take my ambien at night 5 milligram so I get a good night's sleep. Best of luck keep fighting the fight girl. Blessings sunrise

Doluska · « **Reply #254 on:** December 07, 2014, 10:31:09 pm »

Hi guys! Anxiety and crying, this is from med's, no doubt. RIBA rage as well. I am trying my best not to be rude and making a jokes about myself. Antidepressant is a must for me now. When my hepatologyst asked me :" May be u can be without antidepressant for 12 weeks?" I answered :"yes, Why not? Just a little bit of complication - I'll bite people on the streets. Is it OK?" Well, he smiled. Good night and wonderful week ahead. D

sunrise · « **Reply #255 on:** December 07, 2014, 10:36:51 pm »

Good come back D ! I know the anxirlety came on for me as the weeks progrssed
How can I say...everything go more intense. I had this feeling of dread hanging over me. It's hard to explain but I definitely needed some pharmaceutical help. I try not to but I felt like snapping.....

UndetectableC · « **Reply #256 on:** December 07, 2014, 10:47:46 pm »

Quote from: nicole_1234 on December 07, 2014, 09:37:03 pm

Day 5 into Harvoni. I had a horrible anxiety attack last night accompanied by lots of uncontrollable crying. I do have a history with anxiety but I haven't had an attack like that in over 2 years so it felt related to the chemicals. Used to get them a lot on the peg/interferon treatment and for years after off and on. Since then yoga and meditation has helped a lot. But at this point I never know what's from the hepc, the treatment or just my biological makeup. Has anyone else had this? Before it happened I felt wired and edgy.

Afterwards I did a long guided meditation before I went to bed and I slept well. But I woke up in a sullen mood. Yesterday in the daytime I had been extremely happy. Anyway, trying to stay grounded and positive. Feeling mood swings and don't know if it's just me or the Harvoni.

I felt an energy burst right away. I get edgy feelings from time to time, and weepy, too. They gently describe this SE as "Insomnia". And the spacy feelings and brain fog as "Fatigue". My husband (and probably several others) will confirm my moodiness. Hot baths, meditations and humor help. It sounds like you are doing the right things to take care of yourself. Don't forget to drink enough water, too. Hang in there.

nicole_1234 · « **Reply #257 on:** December 08, 2014, 12:38:25 am »

Thank you all for sharing. It's somewhat comforting to know I'm not alone in this and that we can support each other. I will see how I go the next week and if there is more anxiety attacks I will consider meds. I hope not, i really worked hard to get to a place where I didn't need Xanax weekly for sleep and panic, and it's been 2 years of no meds at all and very healthy lifestyle.

In the mean time I will keep doing all the stuff I know how to try and balance the edginess. Yoga, meditation, baths, rest.

sunrise · « **Reply #258 on:** December 08, 2014, 12:51:38 am »

I hope that works for you Nicole. I got your araveduc massage site. Sure was nice. Warmed up some coconut oil and sooo relaxing thanks so much. Goodnight fellow warriors sweet dreams of UD :-)

JillLynn · « **Reply #259 on:** December 08, 2014, 09:57:00 am »

I just finished week 7 on Harvoni. My virus is undetected as of week 6. But my liver enzymes keep going up. I had them rechecked Friday and they are even higher now.
I'm truly puzzled by this. They have been normal for years and definitely on my charts I can see since October 1, 2014 they have been normal every blood test. I'm just baffled by this.

My Dr. said it could be from exercise, that those muscles release the same kind of enzymes.....but I haven't been exercising a ton other than walking a lot.

so I don't know ... I'm kinda freaking out about this.

John3333 · « **Reply #260 on:** December 08, 2014, 10:12:43 am »

Don't freak out JillLynn, your virus is undetected so just keep taking the meds, it will work out, you'll see. Remember, Harvoni is a new drug, so there are going to be some things that we haven't heard about yet. Maybe some of the others who have more experience can offer some insight. I think the main thing is you are responding to the meds.

mario555 · « **Reply #261 on:** December 08, 2014, 10:19:02 am »

JillLynn. Did you check what you're eating? Try reduce anything that could be laden in fat (croissants, nuts, peanut butter, ice cream, etc....). Fatty food are the only items that can make my enzymes really jump. My ALT which hovers around 110 normal can jump to well above 400 if I eat nuts or ice cream.
Also, it is true that exercise can do that also mainly exercise with long sessions (5-10 milles run, etc...) Good luck!

art1951 · « **Reply #262 on:** December 08, 2014, 11:30:19 am »

When my liver enzymes were up my doctor initially thought that I needed to have my gall bladder removed. They may just do that by default.

Do you still have yours?

- Art

JillLynn · « **Reply #263 on:** December 08, 2014, 11:53:55 am »

Art....I do still have my gall bladder. So this happened to you too? hmmmmmm.
Now my dr. is ordering a CPK blood test, abdomen and pelvic ultrasound. None of my symptoms (bloated, swollen and sore lower abdomen, and nausea) have anything to do with the antiviral Harvoni he said. So...more tests and hopefully we can find out what the heck is going on.

Jill

JillLynn · « **Reply #264 on:** December 08, 2014, 11:57:01 am »

thanks John and Mario. I eat really well.......so I don't think its from that.....but we'll see. I'll definitely keep you posted. I'm staying on Harvoni for sure. I've only got 5 weeks left and still feeling super positive. Just wish my liver enzymes would go down. I know they'e not super high......but they're high for me.

ast-110
alt-241
bili up a bit too but still low at 0.4

fllazylady · « **Reply #265 on:** December 08, 2014, 07:29:05 pm »

Hello Warriors,
Just wanted to check in let you know that I took my labs today. Four weeks in now. A couple of days before I can get results will post then but just had the weirdest day today. I was at the hospital early to have labs done and took my pill with me but Ended up taking it on empty stomach. I will never do that again..hit me hard for the first time achy Breaky weak leg feel like my head is in a fog..had to lay down type of stuff..just thought it was different been doing really well with hardly any sides at all. I always have breakfast before my pill. Think that really helps me because I don't think I could do this on an empty stomach. Made me feel really weird...heavy pharmaceutical feeling..don't like it..won't look back at this train stop..better day tomorrow I'm sure of it...Happy Holidays y'all.....

BattleTheBeast · « **Reply #266 on:** December 08, 2014, 07:31:55 pm »

Hi fllazylady,

Sorry you had a yucky day and tomorrow will be better. We are on the way to the cure!

Mel

fllazylady · « **Reply #267 on:** December 08, 2014, 07:46:11 pm »

Thanks Mel I'm sure it will be a Great Day tomorrow..Riding the train to cure town....
Woo Hoo...
Take Care
Paulette

John3333 · « **Reply #268 on:** December 08, 2014, 07:55:16 pm »

Keep us posted JillLynn, stay positive and finish the treatment!

flazylady, thanks for posting your journey with Harvoni as I will be starting it soon. I am glad you guys are here posting your experiences, it's big help.

scared of meds · « **Reply #269 on:** December 08, 2014, 08:39:12 pm »

Yes, I second John3333, I also will be starting my treatment soon and all of you sharing your experiences helps and encourages those of us who are just getting started. Thanks again,
Margo

BattleTheBeast · « **Reply #270 on:** December 08, 2014, 09:17:35 pm »

I just made the big switch from S/O to Harvoni and as grateful as I was to be on S/O I am even more grateful to be on the Harvoni. I had 8 full weeks before the switch and it was 8 tough weeks for me with the Olysio but I wouldn't quit for anything.

With the help of many angels I was finally able to move off of it and start Harvoni on Saturday morning. I can tell you so far it's been much easier on me than the Olysio was and I am beyond thankful.

Stay strong, stay positive, drinks lots of water, eat healthy and keep encouraging each other!

Mel~

sunrise · « **Reply #271 on:** December 08, 2014, 09:37:15 pm »

Hi Flazylady
I just wanted to let you know that when I took my class with Gilead, the nurse has informed us that with Solvaldi it was not necessary to eat .unfortunately she was not able to recommend anything about the other drug I had to take as it was being prescribed off label. With Olsyio, being that is it is a protease inhibitor. That said, Harvoni is solvaldi with a different type of protease inhibitor. as I read the prescription instructions for the protease inhibitor i was taking, it was very important to eat with it. Therefore I would recommend probably it would be good to eat, as you had such a bad reaction to taking it on an empty stomach. I'm sorry you had to go through that at the hospital and I hope you feel better.... sunrise

sunrise · « **Reply #272 on:** December 08, 2014, 09:43:06 pm »

Hey Mel
just wanted to tell you congratulations on the Harvoni and tjat ypur tummy is feeling better. so you go to the doctor tomorrow for your blood? I'm really excited to hear the results. Get back to us on this, as I'm waiting with bated breath... Sunrise best wishes

BattleTheBeast · « **Reply #273 on:** December 08, 2014, 10:02:14 pm »

Quote from: sunrise on December 08, 2014, 09:43:06 pm

Hey Mel
just wanted to tell you congratulations on the Harvoni and tjat ypur tummy is feeling better. so you go to the doctor tomorrow for your blood? I'm really excited to hear the results. Get back to us on this, as I'm waiting with bated breath... Sunrise best wishes

Hi Sunrise,

I go to the Doctor on Wednesday and probably won't get the results until the Monday after, they can be slow here in NJ but honestly I feel so much better today than even yesterday it's kind of scary. I am afraid to say I feel good and jinx myself. I have been so sick since last May that I am nervous that I don't feel horrible, isn't that crazy?

Thanks for your support, I am excited to find out how I am doing as well. I mean 8 full weeks of S/O combo and now Harvoni, what a lucky lady!

Mel~

sunrise · « **Reply #274 on:** December 08, 2014, 10:19:43 pm »

True that!
Probably will do the trick!. I only have 12 days after today and to be honest, im scared about relapsing. I know it's my anxiety rearing its ugly head, but I am fearful. Maybe some words of encouragement migjt come in handy? Thanks sunrise....

BattleTheBeast · « **Reply #275 on:** December 08, 2014, 10:45:13 pm »

Quote from: sunrise on December 08, 2014, 10:19:43 pm

True that!
Probably will do the trick!. I only have 12 days after today and to be honest, im scared about relapsing. I know it's my anxiety rearing its ugly head, but I am fearful. Maybe some words of encouragement migjt come in handy? Thanks sunrise....

Sunrise,

You know what's next if it doesn't work and so do I, the thing is that we have something now that wasn't there even 6 months ago, OPTIONS, so in another 6 months we will have more. We will all win this battle one cure at a time, maybe not today but it's coming. So just know inside that we will win and we will celebrate and we will encourage each other on our journeys, because in the short time since I have been here that's what I have learned and I am more than grateful,

Mel

sunrise · « **Reply #276 on:** December 09, 2014, 12:22:37 am »

Thanks Mel
In my rational mind I know you're right. Of course my emotional mind is a different story. But you are right, there are other options,and I will keep that open mind after I finish my treatment. Thanks for the pep talk, and have a good night I'm glad you're not itching so much... Sunrise

nicole_1234 · « **Reply #277 on:** December 09, 2014, 12:34:18 am »

Day 6 on Harvoni and experiencing pain in my side and extreme edginess, like I want to jump out of my skin. The nurse told me Harvoni was similar to Ribavirin sx and I'm feeling it today. This edginess usually progresses in to an anxiety attack. I feel a tightness in my chest like I cannot breath. Shaky body and I can't sit still. Going to drink water and try to chill in a bath. I don't like this feeling though. I hope it gets better and not worse as I continue tx. Trying to think happy grateful thoughts and let it pass through me, healing me.

sunrise · « **Reply #278 on:** December 09, 2014, 12:45:07 am »

Hey Nicole
Sorry your feeling like that. Still not considering a klonipam? I don't need it octen but it sure helps me when im like you are describing. .

nicole_1234 · « **Reply #279 on:** December 09, 2014, 01:14:14 am »

Hi Sunrise. It took me years after my peg/interferon tx to get free of xanax. I never became addicted to it but it was on off/on crutch and I feel like it altered my chemistry in a way that made me very unstable. I haven't touched a psychiatric drug in almost 2 years. At the end my depression/anxiety was really bad and I had awful reactions to zoloft and I felt like the drugs started to create the problem I was trying to fix in the first place. I decided to quit it all and go homeopathic and did exercise, yoga and meditation which helped tremendously.

I feel like klonipam is in the same family and if I can I want to avoid. For me, its a slippery slope. Of course if I end up sobbing for hours on end like I did on the peg/in treatment I will talk to my doc. I just took a warm herbal bath and feel a bit better. I won't be stupid brave, but I am going to try to use the homeopathic resources I have for now to curb the anxiety.

sunrise · « **Reply #280 on:** December 09, 2014, 07:31:38 am »

I totally understand Nicole as I had to get away from xanax myself. I tried so hard to not use anything, but being on these meds I couldn't take supplements which helped immensely. The problem I had is I couldnt sleep and everday was getting harder and harder for me to function. My anxiety level had gone from 20 to 100 mph. So this is why I had to do something. I respect your strength, and hope you feel better sans pharmis. I hope that for me when this is over and I'm cured I woll be able tp wean myself off as well and get back to my supplements. Best wishes. Have a great day...sunrise:-)

BattleTheBeast · « **Reply #281 on:** December 09, 2014, 08:01:05 am »

Hi Nicole,

Have you tried Essential Oils? When I am ready to snap I try to break out the Lavender Oil and it really does help me. See if you can find a good health food store around, they all have essential oils and you can see what works for you.

Sounds crazy how just smell can help but honestly it really does! Once you figure out what works best for you, there are alternative places to purchase that may be more cost effective (like Amazon)

Wishing you calm and Zen,

Mel

mario555 · « **Reply #282 on:** December 09, 2014, 08:11:17 am »

I'm now at the 4 weeks mark with blood tests scheduled for Thursday. My side effects have abated and I can now take the medication with no worry. I will agree that if you don't have side effects, I feel like maybe the pills were stale? What a crazy idea. For the ones that went on interferon, we ''knew'' we had a powerful medication; death was watching us! Now, with the few side effects, we feel we should feel something or else we worry! I did have anxiety at the beginning but I took care of that with an old medication ''valium''. Valiums stay in your body for 2-3 days which gave me a chance to cool down and it did wonders for my mood... I do not advocate pills much but, it is the least of our problem! We have to get a cure for a silent killer. After I get cured, I'll deal with whatever else there is. So for the ones starting Harvoni, be confident the treatment is generally well tolerated (as is written in the pamphlet). Good luck to everyone!

BattleTheBeast · « **Reply #283 on:** December 09, 2014, 08:25:40 am »

Quote from: mario555 on December 09, 2014, 08:11:17 am

I'm now at the 4 weeks mark with blood tests scheduled for Thursday. My side effects have abated and I can now take the medication with no worry. I will agree that if you don't have side effects, I feel like maybe the pills were stale? What a crazy idea. For the ones that went on interferon, we ''knew'' we had a powerful medication; death was watching us! Now, with the few side effects, we feel we should feel something or else we worry! I did have anxiety at the beginning but I took care of that with an old medication ''valium''. Valiums stay in your body for 2-3 days which gave me a chance to cool down and it did wonders for my mood... I do not advocate pills much but, it is the least of our problem! We have to get a cure for a silent killer. After I get cured, I'll deal with whatever else there is. So for the ones starting Harvoni, be confident the treatment is generally well tolerated (as is written in the pamphlet). Good luck to everyone!

Hey Mario,

I was almost UD at 4 weeks; test showed <15 but my ALT and AST were back to 27 so I was thrilled because if nothing else my liver was getting a rest after years of this horrible infection. I go for my next test which turns out to be almost the end of 9 weeks on Wednesday. Beginning week 9 I was switched from S/O to Harvoni so I am looking forward to positive results. Either way I am going to keep fighting this and Harvoni so far has been much easier for me than the Olysio part of the the S/O combo.

People should do what works best for them no matter if it means a Valium, a Xanax or essential oils, the idea is to get through the treatment and be cured!

Mel

sunrise · « **Reply #284 on:** December 09, 2014, 09:11:36 am »

Amen to that Mel
Have a Blessed day everyone. Off to work :-)

nicole_1234 · « **Reply #285 on:** December 09, 2014, 11:13:25 am »

Yes Mel thank you. I put lavender in a diffuser near my bed and was able to sleep. I will get through this. And to folks starting Harvoni don't worry it IS much easier to tolerate than peg/interferon tx. I'm just a sensitive battle weary soul. But I will prevail!!

nicole_1234 · « **Reply #286 on:** December 09, 2014, 11:36:21 am »

And Mel I'm rooting for you for this 9 week test you will be UD!!!

BattleTheBeast · « **Reply #287 on:** December 09, 2014, 11:53:51 am »

Quote from: nicole_1234 on December 09, 2014, 11:36:21 am

And Mel I'm rooting for you for this 9 week test you will be UD!!!

Thanks so much Nicole! I will take all the good will I can get!

BattleTheBeast · « **Reply #288 on:** December 09, 2014, 11:55:05 am »

Quote from: nicole_1234 on December 09, 2014, 11:13:25 am

Yes Mel thank you. I put lavender in a diffuser near my bed and was able to sleep. I will get through this. And to folks starting Harvoni don't worry it IS much easier to tolerate than peg/interferon tx. I'm just a sensitive battle weary soul. But I will prevail!!

Nicole,

I feel you, have you read some of my down in the dumps posts? I lose it all the time but as long as I get back up again that's what matters. Everyone is here to lift each other so here's a hand for you!

Mel~

fllazylady · « **Reply #289 on:** December 09, 2014, 12:38:47 pm »

So does this mean when we are cured we are cured??? Do we have to worry about relapse?? Just wondering...
Well I'm much better today Mel n Sunrise.. Never will I take that on an empty stomach..
Sending Light n Love to all..
Have a super day...

JillLynn · « **Reply #290 on:** December 09, 2014, 05:26:26 pm »

hello fellow warriors..........Now I think it's the zoloft that's making me so nauseous with the Harvoni. Not positive, but am weaning off of it just in case. As you know my ALT/AST levels have been rising since week 6 ( On Monday they were high, Friday even higher) so tomorrow I'm getting an abdominal and pelvic ultrasound and blood tests. The zofran makes me feel even more nauseous and it's for nausea so not sure what's up with that. It worked in the beginning.
So....yes yes yes it beats the hell out of 48 weeks of PEG/RIB. (which I did 2X). The first time my virus NEVER went away. The 2nd time I was undetected for 9 months and my last blood test it was back. So I'm whats known as a "chronic relapser" in the HCV world.
I just wish I hadn't started the anti-depressant a month before treatment. BUT.... I HAD NO IDEA I was going to get Harvoni. The nausea has worn me down.

I'm watching all of your updates......always sending healing light and love to you all......truly my fellow warriors on this HCV CURE JOURNEY.

peace
love
hug

sunrise · « **Reply #291 on:** December 09, 2014, 05:36:05 pm »

Oh JillLynn
Im so sad you are suffering so badly. I hope that when you get off the Zoloft that your stomach will feel better. being that I'm on S/O I really haven't had a problem with nausea. But what I do have a problem with. It never has gone away, but the doctor is convinced it's not my liver. My alt and my AST have been down now to17and 15 so I don't understand where my pain is coming from. It usually starts in the early afternoon. Such a weird disease... I hope you all have a better evening much love... Sunrise

sunrise · « **Reply #292 on:** December 09, 2014, 05:37:43 pm »

I guess I left the part out where I have a pain on my side my right side

BattleTheBeast · « **Reply #293 on:** December 09, 2014, 05:50:25 pm »

Hi JillLynn and Sunrise,

I have good days and bad days. Today was a bad day and yesterday was a good day. I am learning that moving to Harvoni from S/O is not a just so simple and that Olysio is really messing with me still. I can't wait until my body normalizes from it. At least my rash is gone. Having a horrible issue with running to the restroom and lots of pain involved and that started late last night. Perhaps its a little stomach bug (One can only wish).

Tomorrow I go to the IDhero and I will ask him about what's happening and see if he has any suggestions. For now, I will stay hydrated and muddle through my misery.

I wish you both healing thoughts and tons of strength to get through this chaos called Hep C we are dealing with. When I see another person is cured it helps me to get through and we got a special one today with Bucky. Remember when it's a bad day to know we have hope and can do this.

Mel~

UndetectableC · « **Reply #294 on:** December 09, 2014, 06:02:55 pm »

Quote from: sunrise on December 09, 2014, 05:36:05 pm

Oh JillLynn
Im so sad you are suffering so badly. I hope that when you get off the Zoloft that your stomach will feel better. being that I'm on S/O I really haven't had a problem with nausea. But what I do have a problem with [pain in my right side]. It never has gone away, but the doctor is convinced it's not my liver. My alt and my AST have been down now to17and 15 so I don't understand where my pain is coming from. It usually starts in the early afternoon. Such a weird disease... I hope you all have a better evening much love... Sunrise

if you Google "Can My Liver Feel Pain?" there's a really good web article that explains the pain we experience. Basically, your liver can't feel pain, but it can definitely cause pain.
Hope you are doing well today.

sunrise · « **Reply #295 on:** December 09, 2014, 06:46:07 pm »

Thank you undetectable I will Blessings Sunrise

Doluska · « **Reply #296 on:** December 09, 2014, 09:29:44 pm »

Dear Lynn! It is Zoloft, ask your shrink if u can go on remeron, my shrink was sitting with the pharmacist from Olysio for 1 hour and checking wich antidepressant is good for me; choise wasn't too wide: or Zoloft or remeron, I didn't want Zoloft, it cosing severe abdominal diskomfort for me, so - Remeron. And it works perfect. I have very good shrink, she found for me the ONLY antidepressant that is not filtered by liver, and this is Pristiq, it may be interesting for many of you, fighters! Unfortunately, it cannot be used with Olysio, but after the treatment I will defenately go back to Pristiq, to be gentle with my poor liver. Good sleep and a lot of hope for all of us. D

JillLynn · « **Reply #297 on:** December 10, 2014, 09:53:28 am »

I woke up thinking of you all and this is my first stop of the day always!

Doluska.......my sister in law who got colon cancer is on remeron. (good news for her yesterday, she doesn't have to have another test for 3 years!) we were ecstatic! Pristiq is pretty new right? I don't want anything that can hurt my liver thats for sure.

I'll be checking in on you all........hoping and sending love and healing thoughts to each and every one of you that today is a good day!

sunrise · « **Reply #298 on:** December 10, 2014, 10:03:12 am »

That is so sweet of you JillLynn.we are here for you just as you are here for us. I think we all realize that how important it is that we have support. It's also my first stop in the morning too. I did read that article and it was very interesting about pain on your side. I really need to start eating more liver friendly foods I've been cheating a lot being that I'm on the medication.everybody have a blessed day and will talk to you soon much love sunrise

JillLynn · « **Reply #299 on:** December 10, 2014, 10:14:12 am »

I have to read that article Sunrise.....gonna read it now. Really hope you have a pain free day! xxoo

thank you Undetectable C for the article (I'm googling after this)
Mel.......big hug, hope today is a good one for you too.
Nicole
and flazylady and
Doluska......
hug hug hug!

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