Author Topic: Harvoni Side effects (Read 2192421 times)

Lynn K · « **Reply #500 on:** January 05, 2015, 03:47:12 pm »

Hi wa7

I also have had hep c since I am guessing 1978 and found out in 1990.

I have treated and did not respond to the old treatments so currently I am am starting week 8 of 24 weeks. I was diagnosed with cirrhosis in Jan 2008.

As far as I know there are basically compensated and decompensated cirrhosis. Decompensated me and your liver can no longer function fully and complications start to set in.

When I was diagnosed the first thing my doctor did was give be the pneumonia vaccine usually for those over 65 and got me vaccinated against hep a and hep b. We also did an upper endoscopy to check for esophageal varicies they are enlarged blood vessels in the swolling tube that kind of look like vericose veins. I had a repeat 2 years later and the vessels had enlarged enough to be at risk of bleeding si I had several banding procedures to destroy the enlarged veins.

I get blood work every 6 months plus an abdominal ultrasound to check fir liver cancer. Hopefully your doctor is setting up similar program for you. You need to be under the care of a hepatologist preferably associated with a liver transplant center if you can. They are best trained to follow patients with advanced liver disease like your and I have by having cirrhosis.

Good luck to you hope you make. SVR
Lynn

mario555 · « **Reply #501 on:** January 05, 2015, 05:54:06 pm »

Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication. We have an overly generous welfare system that will pay medication to welfare recipients and prisoners. If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.
In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest. I have nothing but good things to say about Gilead.
No provinces offer any kind of financial aid. If you're employed and have no insurance or if you're insured with the wrong company, you're screwed.
The state of health care is dependent on governments that change every 4 years. I don't think they give a hoot as to what happens to me.
It is so hard to get financed for medication that we are but a handful of us to be treated with Harvoni. If you are poor, or a bandit, you'll get the medication for free. So, if you can't contribute financially to society, governments will keep you healthy! For the ones paying taxes.... Good luck!

mario555 · « **Reply #502 on:** January 05, 2015, 05:56:31 pm »

By the way good news ; just got my 4 weeks viral load.... UND.....

Katie · « **Reply #503 on:** January 05, 2015, 06:16:16 pm »

Mario! That is wonderful!!!! I get my results on Thursday and know they will be positive. I don't care about UD at this point as I am just at 4 weeks, but many are seeing that result.

Happy New Year to you and everyone on this forum. It is so remarkable after all the years of suffering and waiting for a cure that actually works! I am totally jazzed for all of us!

Katie

HHburme · « **Reply #504 on:** January 05, 2015, 07:30:01 pm »

Mario....Great news !!! On your way to being cured !!! So exciting to hear that the treatment is working. Another week before I get the 4 week blood work, fingers crossed.

Fight the Good Fight !!

CHepCFree · « **Reply #505 on:** January 05, 2015, 10:52:50 pm »

Quote from: Katie on January 05, 2015, 12:17:17 am

It looks as if senna is a problem after long term use but since our liver is healing and already compromised I wouldn't use it. Check this out and there is lots of other info if you just Google senna liver. I'd definitely ask your doctor if you are planning to use this daily.

http://www.nlm.nih.gov/medlineplus/druginfo/natural/652.html#Safety

Thanks for the info on senna. I only did two days in a tea with other ingredients but will stop and do more prune juice. I love the taste of that, believe it or not. Just had my 4 week test today and scheduled for a fibroscan next week. I had a biopsy 10 yeas ago an was a 2.5. Insurance didn't ask for anything at this time, but I want to know what stage the damage is. Anyway...thanks for the senna info.

Katie · « **Reply #506 on:** January 05, 2015, 10:58:50 pm »

You are welcome CHep! I have been researching supplements on what affects the liver negatively for the last 10 years. St John's wort and Kava Kava are a couple of bad ones. I LOVE prunes and prune juice and prune filled pastries are my favorite, although I avoid the bakery section and try and be good. Some people don't know what they are missing. <Big Smile>

CHepCFree · « **Reply #507 on:** January 05, 2015, 11:09:46 pm »

Quote from: CHepCFree on January 04, 2015, 10:11:58 pm

I hope people call Gilead. You are right that trials were small. We are thr rel test cases.

Yep finally bought some prune juice and found some tea with senna which is an herbal laxative. May try some actul plums. Thanks.

Phone number for Gilead to report side effects is 1-800-445-3235. They will take your name and information. Very friendly...

Roger · « **Reply #508 on:** January 06, 2015, 12:30:08 am »

Quote from: mario555 on January 05, 2015, 05:54:06 pm

Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication. If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.

Gilead covered the rest. I have nothing but good things to say about Gilead.

Mario,
Thanks for the explanation. So while you are in the hospital (liver transplant) they'll "give" you the needed drugs - but when you leave the hospital you are on your own for the need drugs? Is that correct? If it is correct, do they "make sure" a transplant person is "setup" with the funds necessary to pay for the drugs - or else no transplant?

What type of private insurance are you allowed to purchase? I was under the impression that private insurance was against the law in Canada (BC?).

I have heard many good things about Gilead too.

mario555 · « **Reply #509 on:** January 06, 2015, 07:07:46 am »

Roger. Private insurance is available but not widely held (medical). It will pay what's over and above 'basic care'. For example, a single room at the hospital, ambulance drive, etc. Also in the more populous provinces, you could have "preferential access" but, if the doctor receives payment from you or an insurance company, he has to "hop out" of the government regime. In Canada, all health services are paid by governments or else, get out! There is absolutely no way of limiting health services because everyone would prefer to have a hospital at every Street corner and a doctor in the basement of your home. If it's free, you must ration services in order to control costs. Access will be determined by the severity of your disease. YOU CANNOT BUY MEDICAL SERVICES at any costs. If you want access right away, you must go to a private clinic (very, very few) or go to the states. An interesting point is that I have never met/known someone who sued his doctor. Doctors do require medical insurance but the cost is reasonable.
I don't know about transplants. Some medication can be received after a prior authorization. My guess for Harvoni would be 2 years before it goes on that list.
It's not a bad system because if you have a heart attack, you'd be seen in 5 minutes, patched up, operated on and walk out of the hospital with $0 in costs. Unfortunately, the system is being abused by welfare people that will come at the hospital with a cut on their finger and the'll use an ambulance to jump the queue!
I am in Florida right now and I see hospital signs saying 5 minutes delays. Back home it would be 9 hours wait...
Finally, when I last saw my hep doctor before starting treatment, he had just received a Fibroscan. I was the first to try it and tried it again 2 weeks later to make sure it worked well (F4 both times). Total cost to me? $0...
It has its strengths and weaknesses. I read that for many people in the states you are one major disease away from bankruptcy. In Canada, a major disease will provide you with rapid access...

Roger · « **Reply #510 on:** January 06, 2015, 11:56:04 am »

Quote from: mario555 on January 05, 2015, 05:54:06 pm

In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest.

Mario,
Thanks for the explanation. Did you purchase insurance in the state to cover your Harvoni? I'm confused what you meant by the statement that I highlighted above

mario555 · « **Reply #511 on:** January 06, 2015, 12:19:15 pm »

My insurer is "The Canadian chamber of Commerce" due to the fact I'm self employed. Rates are determined by the group history rather than your personal history. Self employed are usually younger than me so rates are low. As for the Florida business, I am just starting my new life as a snowbird. I bought my pills in Canada from my neighborhood pharmacy and brought them here. Also, Harvoni is cheaper in Canada than in the states. $26,000 for a month supply.

Roger · « **Reply #512 on:** January 06, 2015, 12:28:17 pm »

I see. We have a lot of misconceptions here, regarding the Canadian system.
I had read somewhere that the Canadian government negotiated a cost from Gilead of $56K for a 12 week Tx.

derekoti · « **Reply #513 on:** January 07, 2015, 01:25:55 am »

this is day six for me taking harvoni and i have not had any side effects yet praying it stays this way throughout the 24 weeks

goodbyehepc · « **Reply #514 on:** January 07, 2015, 01:42:31 am »

Quote from: art1951 on December 28, 2014, 10:50:59 pm

GHC
I was undetected at 6 weeks. I did have an issue at 8 weeks where I had to go without medication for 5 days while they where working out the copay. It ended up costing me $8,634 out of pocket for the last 4 weeks. The doctor worked through Gilead etc. but in the end I had to pay. I am now having another issue that my doctor is leaving the practice and had given me notice that I have to find another doctor. The good news is that I am about 3 weeks from being done.
I am having some joint pain after exercising but think it is normal and not due to the Harvoni. Are you doing better now?
- Art

Hey Art
Wow this is too bad you had pay out of pocket. I'm sorry to hear that. I also had insurance fiasco at the end of week 8. They too didn't want to pay for the rest of the 4 weeks. They denied authorizing for 4 more weeks but we appealed it and then miraculously won. I also have to find a new doctor and hope to get a better one soon.
Now I have 2.5 weeks more to go. I am undetected but I've been experiencing a lot of muscle and joint pain toward the latter part of my treatment, and to top it off a few days ago I am feeling s soar throat so I'm coming down with something etc. ughhh but the joint and muscle aches are not related to this. I actually have some fluid build in one of my knees. My doctor and I are wondering if I worked too hard on my body exercising because of all the surge of energy I got since from the treatment.
You must be nearly finished? How are you doing now? Any side effects?
GHC

Katie · « **Reply #515 on:** January 07, 2015, 01:48:44 am »

I am having a real sweet tooth lately where the craving is almost unstoppable. Is anyone else experiencing this. I know sugar isn't a good thing to be eating but the craving is especially bad in the evening. In the past couple years I have enjoyed ice cream a bit too often but now it is anything sweet. Ugggg!

Thanks,

Katie

goodbyehepc · « **Reply #516 on:** January 07, 2015, 01:51:18 am »

Quote from: Katie on January 07, 2015, 01:48:44 am

I am having a real sweet tooth lately where the craving is almost unstoppable. Is anyone else experiencing this. I know sugar isn't a good thing to be eating but the craving is especially bad in the evening. In the past couple years I have enjoyed ice cream a bit too often but now it is anything sweet. Ugggg!

Thanks,

Katie

Yes, I have as well ever since beginning treatment but not sure why. I'm trying with all my might to stay away but some days are harder then others but try try try
GHC

mario555 · « **Reply #517 on:** January 07, 2015, 08:34:38 am »

Strange side effects for me. As I am finishing my 8 weeks out of 24 I have noticed something strange. Please do not laugh! I've had problems over the last 15 years with a growing case of hemorrhoids, let's say 6 out of 10 for severity. It's now at a level 1,almost disappeared! Now I want to know if any of you had an improvement for any kind of blood pooling may it be in your ankles, hemorrhoids or other? Sorry again for introducing this subject....
To Lynn K. Thank you for your talk of last week about my poor behavior. It did some good! I was in a large mall yesterday and saw a Ben and Jerry booth. Decided to get myself that big sunday. As I was waiting my turn, I thought of you and other members who have been super careful with their nutrition and as I approached the counter I started feeling guilty and thinking of the damage the scrumptious sunday would do to my liver. I left the counter without the sunday....
At the start of my 9 week I have very little side effects. My health is generally improved and I can't feel my liver anymore which is wonderful. To all the newcomers, don't hesitate to start the treatment. Kudos to all the people that suffered those 48 weeks of interferon, you have been way tougher than me!

fuzzy72 · « **Reply #518 on:** January 07, 2015, 08:39:23 am »

Just rec my RNA 4 week test result: not detected! Side effects have been few, before starting Harvoni I had "aching" similar to flu aches from head to toe. I assumed this was the cryoglobulinemia. After the first week of Harvoni the aches diminished greatly. I still have some but not nearly as bad as before. I do get headaches but honestly, I had headaches before. I do wear out easily though and hope that will improve as well. I hope the cognitive impairment gets better too. Before Harvoni, I had no appetite and had lost 25 lbs in about 3 months. I have an appetite now and actually become so ravenously hungry at times I think I could eat a smorgasbord.I have 8 more weeks of Harvoni to go and the results have really pimped my enthusiasm. My spouse has not started treatment yet but hopefully, in the next 2 weeks. I am still angry with the MD who misread my report 11 years ago. Had I known then I doubt I would have the cryo or Cirrhosis. For 11 years I was treated with high dose steroids for several months at a time. This is contraindicated in Hepatitis B and C.

fuzzy72 · « **Reply #519 on:** January 07, 2015, 08:46:16 am »

Katie, I have the sweet tooth craving too. I will suck on a piece of hard candy if its really bad but otherwise trying not to cave in. My spouse and I have really moved to change our diets to a more healthy way. We never were big at fast food but now there's no fast food, very little to no processed food either. My spouse is retired and thank god he loves to cook and is very conscious of the food we eat.

art1951 · « **Reply #520 on:** January 07, 2015, 11:55:41 am »

Quote from: goodbyehepc on January 07, 2015, 01:42:31 am

Hey Art
Wow this is too bad you had pay out of pocket. I'm sorry to hear that. I also had insurance fiasco at the end of week 8. They too didn't want to pay for the rest of the 4 weeks. They denied authorizing for 4 more weeks but we appealed it and then miraculously won. I also have to find a new doctor and hope to get a better one soon.
Now I have 2.5 weeks more to go. I am undetected but I've been experiencing a lot of muscle and joint pain toward the latter part of my treatment, and to top it off a few days ago I am feeling s soar throat so I'm coming down with something etc. ughhh but the joint and muscle aches are not related to this. I actually have some fluid build in one of my knees. My doctor and I are wondering if I worked too hard on my body exercising because of all the surge of energy I got since from the treatment.
You must be nearly finished? How are you doing now? Any side effects?
GHC

GHC
I have another 7 pills to go and then will get retested and should have results the following week.

I have not had any issues with joint and muscle pain other than those that I normally get after not exercising for a while. I still do have headaches but they are easily manageable with Tylenol. I have had headaches for years but they are a bit worse on Harvoni. I could tell when I was out of pills for 5 days that the headaches were starting to go away on the 4th and 5th day.

Any way you measure it, it has been relatively easy and I definitely feel better and have more energy. I am sure there are lots of individual variables such as state of the liver etc. that come into play. I am hoping for undetectable again next week and then in 12 weeks.

I have noticed that most of the swelling in the ankles that I was getting has also gone away. I am assuming that my liver is not under as much stress as it was and is now performing better.

As far as craving sugar, I have never met a piece of chocolate that I could resist so it is difficult to tell if the craving is worse or not.

Thanks,
Art

Roger · « **Reply #521 on:** January 07, 2015, 01:31:06 pm »

I notice a little ill stomach feeling - come and go, but not too bad. Not like the old Tx!

Fatigue that comes & goes in waves is more noticeable... especially if I exert myself.
But it's livable.

My doc told me to stop all manual work and grab a book for the 12 weeks. She said - 'take a vacation - you are healing, so go heal'. Good advice!

Katie · « **Reply #522 on:** January 07, 2015, 05:46:28 pm »

Hi everyone, I am curious about the blood work you are getting for the viral load. There are 2 kinds. One that gives the actual number... IU/ml and another one which is more sensitive to tiny amounts to see if it is still present (positive or negative without a number). Evidently, if it gets below a certain amount it may not be detected with the first type of test. Do you know about this? Many are reporting undetected at 4 or 8 weeks and I am curious. I get my first 4 week results tomorrow.

Thanks for your input!

Katie

JoeK9999 · « **Reply #523 on:** January 07, 2015, 06:20:57 pm »

Katie,
The viral load test which shows the actual number is the quantitative test.
The other test is called the qualitative test. Both have a lower limit of detection so
neither will definitively say every last strand of virus is gone. We all have to wait for the 3 month EOT test to know that it isn't replicating again.

Katie · « **Reply #524 on:** January 07, 2015, 06:38:09 pm »

Thanks Joe! I'll check on the EOT test. I figured I was missing something and appreciate your response. There is a lot to keep track of and that was never explained to me. From all of the sites I have read, I must have missed that along the way.

Katie

Roger · « **Reply #525 on:** January 07, 2015, 06:42:51 pm »

Quote from: JoeK9999 on January 07, 2015, 06:20:57 pm

We all have to wait for the 3 month EOT test to know that it isn't replicating again.

Joe,
I'm glad Katie brought this up, as I was reading an article on Hepatitis Central and was "trying" to figure this out myself last night. Can you please explain the EOF test?

If the two basic tests are not 100% accurate down to 0, then do the doc's use the EOF test to be 110% sure the dragon is dead?

JoeK9999 · « **Reply #526 on:** January 07, 2015, 08:08:11 pm »

Katie,
EOT = "End of Treatment". It seems that the norm today is to do a Hep C test
12 weeks after treatment ends. Some doctors still want to wait for 24 weeks after.
At that point it does not matter which test is done (qualitative or quantitative).
Undetected at the 12 or 24 week after your last dose, indicates the virus is not replicating anymore and thus has been eradicated from our bodies. All of us
want to know why the few percentage relapsed after the EOT. I have seen speculation that the ones who relapsed we're either re-infected through blood or had major immune disorders. I don't know if that is fact or fiction and
I am not in the medical field. At some point there will be more published about it.
In the meantime we all need to finish all of our medicine so we will be cured and we can quit worrying about the dragon!!!

ranjankoyn · « **Reply #527 on:** January 07, 2015, 08:11:30 pm »

I just got my six week draw last week it showed <15 still detected

Katie · « **Reply #528 on:** January 07, 2015, 08:41:42 pm »

Quote from: JoeK9999 on January 07, 2015, 08:08:11 pm

Katie,
EOT = "End of Treatment". It seems that the norm today is to do a Hep C test

HA So that's why when I searched for the Hep C EOT test nothing came up. hahahaha...I just am not good with acronyms even though in my field we used them all the time. Biologist for the State of Alaska. Have no idea how I got infected other than I did know some druggies way back when and did do some histology work for a cancer clinic back in the 80's but it could have been anywhere I guess. Drove me crazy for the first year or two until a friend told me to "Let it GO as you have it so deal with it". That's what good friends are for!

Thanks again for your clarification. I like understanding so I know what to ask my doctor and can get more out of his response. My appointment is tomorrow! I am excited as I have been from 2,600,00 to 16,500,000 for the past 10 years and I can tell it is working by how I feel

Thank you!

Katie

BG42 · « **Reply #529 on:** January 08, 2015, 10:39:47 am »

Hello everyone!

(first post)

I found this thread a few days ago because I'm currently waiting for my insurance company to approve Harvoni. My GI doc believes I am a good candidate for the treatment and thinks they will approve. My VL is 4 million and I am at stage 3 fibrosis. I quit drinking alcohol a couple years ago after I found out I had Hep C. I have had hep c for most likely over 30 years. I undoubtedly got it from blood products that I received in the hospital, in the 1980's, as a kid.

I'm nervous for the treatment and, like all of you, have the side effects on my mind. I work in a job that requires quite a bit of energy. Also, I enjoy exercise and running so I wonder if running will make me feel better or worse while I'm treating.

I also want to thank all of you who have posted in this thread. you have no idea how helpful it is to read posts from people who are undergoing treatment right now. It is also very encouraging to see all the undetectable virus loads after just four weeks! I will be on a 12 week treatment myself.

Keep posting, I'll keep reading, I'll even update my progress myself! Thanks for being there!

Roger · « **Reply #530 on:** January 08, 2015, 11:02:39 am »

BG,
This is a great place to get info, double check your doctor, etc.

Occasionally, I feel ill to my stomach (more so in the first weeks of Harvoni Tx), but it passes within 20 mins or so.

Occasionally I get a mild headache (again, more so in the first weeks of Harvoni Tx), and they too pass in 20 mins or so.

Without 7 or 8 dried plums 2 - 3 times a day, I experience constipation.

Especially those first weeks, I would get REALLY fatigued - easily. Tired is not the correct word - fatigue is better. When I rest a while it too passes.

My doc told me NOT to do labor (I'm retired and like to work in my garden) for the 12 weeks. 'Take a vacation, let your body heal', she said. Good advice.

It is much better now that I'm almost 2/3's into Tx - but during that first month I would not have wanted to be at a job that was a strain.

My 2¢. You'll get plenty of advice here. Just keep asking!

Amj1951 · « **Reply #531 on:** January 08, 2015, 11:06:17 am »

Quote from: BG42 on January 08, 2015, 10:39:47 am

Hello everyone!

(first post)

I found this thread a few days ago because I'm currently waiting for my insurance company to approve Harvoni. My GI doc believes I am a good candidate for the treatment and thinks they will approve. My VL is 4 million and I am at stage 3 fibrosis. I quit drinking alcohol a couple years ago after I found out I had Hep C. I have had hep c for most likely over 30 years. I undoubtedly got it from blood products that I received in the hospital, in the 1980's, as a kid.

I'm nervous for the treatment and, like all of you, have the side effects on my mind. I work in a job that requires quite a bit of energy. Also, I enjoy exercise and running so I wonder if running will make me feel better or worse while I'm treating.

I also want to thank all of you who have posted in this thread. you have no idea how helpful it is to read posts from people who are undergoing treatment right now. It is also very encouraging to see all the undetectable virus loads after just four weeks! I will be on a 12 week treatment myself.

Keep posting, I'll keep reading, I'll even update my progress myself! Thanks for being there!

BG42, I am new too (Harvoni for 12wks.) and I was so afraid to take the first pill and I came here for help and there is lots of help and support from people who really do understand. I promise after you take the first one your anxiety will go down. I am active and its early true, but so far I feel good and knowing that pill is killing a horrible disease is a great feeling. Good luck to you : )

mario555 · « **Reply #532 on:** January 08, 2015, 11:22:00 am »

Welcome to the group! Try not to worry too much about the side effects! As stated in another post, your anxiety will fall off after the first pill... As for the benefits, watch after the second or third pill; your new found strength will become evident. Good luck and keep reading the posts..
Mario

Tutu · « **Reply #533 on:** January 08, 2015, 01:07:07 pm »

I am on day30, got my blood work all my liver enzymes are in the normal range and my HCV Quantative <12 LOG 10HCV <1.08 Yay! 8 more weeks! I do have a question though has anyone else had any pain in their liver, not bad but just enough to know that you have a quiver in the liver? I have also had intestinal issues like cramping. I told this to my Dr and now he wants to see me and possibly D/C my meds :-(

Anyone else had these side effects besides the fatigue which has gotten better

Pat

mario555 · « **Reply #534 on:** January 08, 2015, 01:38:53 pm »

I did (do) have little pulling in my liver once in a while but I was UD after 4 weeks same as you. I would suggest you continue with your med after seeing your doctor. Don't forget that "normal people" have pains in their livers also... Good luck!

JoeK9999 · « **Reply #535 on:** January 08, 2015, 01:47:21 pm »

Quote from: Katie on January 07, 2015, 08:41:42 pm

HA So that's why when I searched for the Hep C EOT test nothing came up. hahahaha...I just am not good with acronyms even though in my field we used them all the time. Biologist for the State of Alaska. Have no idea how I got infected other than I did know some druggies way back when and did do some histology work for a cancer clinic back in the 80's but it could have been anywhere I guess. Drove me crazy for the first year or two until a friend told me to "Let it GO as you have it so deal with it". That's what good friends are for!

Thanks again for your clarification. I like understanding so I know what to ask my doctor and can get more out of his response. My appointment is tomorrow! I am excited as I have been from 2,600,00 to 16,500,000 for the past 10 years and I can tell it is working by how I feel

Thank you!

Katie

Katie - My doctor ordered the Aptima HCV RNA qualitative test for me at 4 weeks and I was stll detected. He and all the literature on this test claim it maybe the most sensitive test available. I didn't like being detected and not knowing my viral load, but I don't want false hope either. My 12 weeks of Harvoni is complete next Thursday and he doesn't want to test for 24 weeks EOT after that. I asked for a 12 week EOT test for sanity also and he said okay. These are the only tests that count. Fingers crossed!
It will be the same Aptima test.

Katie · « **Reply #536 on:** January 08, 2015, 01:59:34 pm »

Quote from: mario555 on January 07, 2015, 08:34:38 am

Strange side effects for me. As I am finishing my 8 weeks out of 24 I have noticed something strange. Please do not laugh! I've had problems over the last 15 years with a growing case of hemorrhoids,
At the start of my 9 week I have very little side effects. My health is generally improved and I can't feel my liver anymore which is wonderful. To all the newcomers, don't hesitate to start the treatment. Kudos to all the people that suffered those 48 weeks of interferon, you have been way tougher than me!

I'm not laughing Mario. Since HepC can affect the blood vessels in the esophagus, it could very well affect the other end as well. I see my doctor today and will ask him. I have the same problem and sometimes it is very bad...at other times not so much and I too have noticed they seem to have shrunk down to being not noticeable. Interesting. I never thought about it until I read your post as it is easy not to notice the improvements and concentrate on the negative. I am so lucky as my side effects have been 90 % positive.

BG: Glad you found this site. Please listen to your body and don't push yourself and drink lots of water (1/2 gallon plus a day). I worked for 10 years feeling terrible in a high stress job and pushed myself through each day. I retired almost 2 years ago as I just couldn't do it anymore, but I have to say, I'd have an easier time working now, than I did then, but am so grateful I don't have to. If you have any personal leave available, you might want to keep that in mind if it is too much for you. As far as your work out...maybe do shorter runs at a slower pace and if that works do a couple a day. Just listen to your body as exercise is always beneficial.

Good luck to you, and keep us posted!

Katie

Katie · « **Reply #537 on:** January 08, 2015, 02:03:39 pm »

Quote from: JoeK9999 on January 08, 2015, 01:47:21 pm

Katie - My doctor ordered the Aptima HCV RNA qualitative test for me at 4 weeks and I was stll detected. He and all the literature on this test claim it maybe the most sensitive test available. I didn't like being detected and not knowing my viral load, but I don't want false hope either. My 12 weeks of Harvoni is complete next Thursday and he doesn't want to test for 24 weeks EOT after that. I asked for a 12 week EOT test for sanity also and he said okay. These are the only tests that count. Fingers crossed!
It will be the same Aptima test.

I like seeing the viral load too especially at this early stage to make sure it is dropping. How exciting to have it go from millions to less than 100 as so many have experienced. I'll let everyone know how it goes today and don't know what test he gave me, so we'll see.

Thanks Joe!

Katie

JoeK9999 · « **Reply #538 on:** January 08, 2015, 06:24:57 pm »

My doctor didn't even want to do the 1 month test.
His opinion is no test matters except 6 months after end of treatment.
He believes everyone goes undetected with Harvoni by the end of treatment
and it is a waste of money to do them during treatment. He did do at least 3 CBC's and Liver panels which showed ALT down in normal range along with everything else.
I practically had to bend his arm to order the 1 month HCV test.
I guess he just doesn't have the greatest bedside manner. Oh well. He's the doctor.

kate0b1 · « **Reply #539 on:** January 08, 2015, 06:48:40 pm »

@BG42, I am three weeks into tx and go to gym usually 3 times a week, mostly because like Art i have never met a piece of chocolate i didn't like. I kinda took it easy the first week just to make sure but it was fine so just jump in.

Roger · « **Reply #540 on:** January 08, 2015, 07:56:54 pm »

Quote from: JoeK9999 on January 08, 2015, 06:24:57 pm

My doctor didn't even want to do the 1 month test.

I guess he just doesn't have the greatest bedside manner. Oh well. He's the doctor.

Joe...
and your the customer! Do not fear telling him what you want. It's your life, peace of mind, and money. Those who are tenacious live the longest. Those who "do what the doctor says", believe that the"doctor is always right", have the most problems...

Katie · « **Reply #541 on:** January 08, 2015, 08:08:37 pm »

Hi everyone.....

So here is my 4 week report!

End of November VL = 2.692,043 with normal ALT/AST
The virus fluctuated from over 2 million to over 16 million during the past 9 years and I am lucky to not have cirrhosis. This is my first treatment as the old horrible one was not worth it due to the small cure rate percentages, so I refused it.

4 week blood work: VL = 59

So for all of you newbies.....this is a miracle drug and welcome aboard! Don't Worry....Be Happy and we are around to reap the benefits. I feel so blessed and so grateful!

Katie

BG42 · « **Reply #542 on:** January 08, 2015, 08:21:07 pm »

So what happens to us hep c patients after we are cured, after SVR? For example, will my stage 3 liver go back a little bit possibly? (stage 2 or even a stage 1?)

I feel lucky to have the opportunity to be able to treat this!

@Katie That is fantastic news! Congratulations to you! Are you on an 8 or 12 week treatment?

Katie · « **Reply #543 on:** January 08, 2015, 08:26:00 pm »

Mario: I asked the doctor about the hemorrhoids and he stated that if you have cirrhosis the scar tissue can cause pressure with the veins and that pressure goes to the most sensitive areas which can affect the esophagus and the anus and lower rectum.

In my case since I don't have cirrhosis, it is independent however since I am keeping myself well hydrated that could also benefit the issue. I was not good at drinking water, or any liquids unless it was really hot out and we just don't have much hot weather here. Guess who is going to maintain this healthy addition of drinking over 1/2 gallon of water a day!

Hope this helps!

Katie

Katie · « **Reply #544 on:** January 08, 2015, 08:31:09 pm »

Quote from: BG42 on January 08, 2015, 08:21:07 pm

So what happens to us hep c patients after we are cured, after SVR? For example, will my stage 3 liver go back a little bit possibly? (stage 2 or even a stage 1?)

I feel lucky to have the opportunity to be able to treat this!

@Katie That is fantastic news! Congratulations to you! Are you on an 8 or 12 week treatment?

BG42: Thank you! I am on 12 week and won't have any additional blood work until then. As for the cirrhosis, you should ask your doctor or research that online. My understanding is that the liver can heal itself, but I don't think the scar tissue can be reversed. I am not a doctor and do not have any medical expertise, so I must have read that somewhere.

Does Anyone out there know the answer to BG's question?

Tutu · « **Reply #545 on:** January 08, 2015, 08:57:16 pm »

The scarring or fibrous will not heal but other parts of the liver will regenerate

Roger · « **Reply #546 on:** January 08, 2015, 09:12:43 pm »

Tutu,
What does that mean?
The scaring is spread throughout the liver, not just in one place.
My doc said all stages will heal, and I just assumed that it meant
the new replaces the old dead tissue - but now I'm not sure of this.
How does it work?

kate0b1 · « **Reply #547 on:** January 08, 2015, 09:28:07 pm »

Katie, that is so awesome news, I might be a little excited now to get my labs next week lol, but could you please keep the cold weather where it belongs? It's 10 degrees in the the great north east as we speak.

Katie · « **Reply #548 on:** January 08, 2015, 09:53:52 pm »

Thanks Kate. You should really be looking forward to it. Everyone in the doctor's office was cheering with my results.

Did you see my Alaska weather update on the other thread? You'll want to move to Alaska when you read it. HA!

I'll be thinking of you next week and Island Girl gets her results on Monday. We are all on our way and after so many years of suffering and feeling like biohazzard it doesn't really seem real yet.....But it IS! <big Smile> and ((((((((HUGS)))))))

Katie

mario555 · « **Reply #549 on:** January 08, 2015, 10:40:12 pm »

Kathie. Thanks a lot for the info. It's nice of you to think of others while you have your own problems to deal with. It's well appreciated.
For the ones having problems getting tests after 4-8 weeks or whenever, think that if you want a test that tells "you" something useful to help relieve the anxiety, it's medically necessary!! In most cases that same doctor would give you a prescription for valium to relieve stress in a heartbeat! Why not replace the script against a test??
To the other ones talking about liver cell regeneration. I have read so much stuff I can't pinpoint the exact research. The research had been done on a long time scale and was hard to put together because of the time delay in finding cured people willing to participate in a multi-year study and the waiting time in order to wait for improvement. The results were that on average we'd see a 1 to 2 grade improvement. I am F4 and I was told I was borderline cirrhotic. (not real sure of that state???). I was happy with the long read because I saw that Longshot chance. The study was done from late 90 to mid 2000. It only concerned INF - INF +riba.

JoeK9999 · « **Reply #550 on:** January 09, 2015, 06:01:40 am »

Katie - Great news. Keep the positive attitude going. It helps us all.
Mario - I read at least one report on this board of the liver stage going 2 stages back in the right direction after a year of prior peg/rib treatment.
See below. It was one of Lucinda's post.

You are on your way in the right direction. The anxiety is the worst part of these new treatments. Hopefully in one year we will look back and can laugh together about it. We are not hearing much from people on the trials probably because they have moved on with the hep c free worry gone. They have other problems now like getting their car fixed:-)

Re: Serious issue with my four week blood test, help!
« Reply #7 on: December 05, 2014, 02:58:03 PM »
Quote
Petra - I would also add, "That panic is unnecessary." We humans panic because of things we fear may or may not be happening. The one thing I know is that even without an SVR, if the ALT/AST normalize, your liver is benefiting. Studies have shown this. I was a responder-relpaser after 48 weeks of PEG+rib and my liver bx went from stage 2 to stage 0 - I never regretted doing those 48 weeks.

kate0b1 · « **Reply #551 on:** January 09, 2015, 06:10:02 am »

Joe, good morning, I like your post, it helps so much to have people understand the panic about labs re: trying not to panic about my labs that i haven't even gotten yet lol. One thing my PA said when i relapsed was that for 6 months my body was without hep c for the first time since i was probably 17 years old, i know she was mostly trying to get me stop crying, but that stuck with me over the last year and it makes sense. Everyday you are able to let your liver be normal or close to it is a day your liver gets to help itself.

JoeK9999 · « **Reply #552 on:** January 09, 2015, 06:24:22 am »

Kate,
You are absolutely right. When we all heard and started this it was clear in our minds
this was the miracle cure we have all been waiting for. And then weeks into it we all have the fear in the back of our minds that we are going to be one of the tiny percentage that relapse.
It's nothing but anxiety. We all want to know the details of that tiny percentage, but it really isn't published. The best news is that even that tiny percentage will be cured in the near future because the researchers have finally discovered and moved in the right direction to kill this virus once and for all. In the meantime our livers don't have the stress, prior to treatment.

kate0b1 · « **Reply #553 on:** January 09, 2015, 06:33:13 am »

I tying to remind myself I have never been in the top 1% of anything lol so why would i be in the 1% for relapsers from this right! Im making that number up by the way i don't even know what % of the trials relapsed or were non responders. Im pretty sure we haven't even got to the 12 week out labs of all of us.

JoeK9999 · « **Reply #554 on:** January 09, 2015, 06:49:44 am »

I like that train of thought. I'm going with it-:)

lucy321 · « **Reply #555 on:** January 09, 2015, 09:34:20 am »

I've been on Harvoni for two months and have one more dosage to go. So far so good.
Insurance coverage is a night mare and the specialty pharmacy is an even bigeer nightmare... they suck. anyway...
i have had a slight headache now and then but that could be attributed to other things like starring into a computer screen or my phone. I am however always tired. which they did say was a side effect. What I don't remember hearing as a side effect was coupled with being tired, I also have insomnia. so tired tired can"t sleep.

I am not complaining. Harvoni, if it works, is medical marvel. And we should all be excited.

mookie5150 · « **Reply #556 on:** January 09, 2015, 09:38:20 am »

I started Harvoni on Christmas Day- I like to call it my Christmas miracle. I have the opposite of the most common side effects. I have not slept in almost the two weeks since I started taking it. I am now using medication to help me sleep. Honestly, it is like I have taken a hit of speed when I take Harvoni- which I don't actually mind during my work day but not being able to sleep without meds is making my mind very foggy. I have had one or two really bad headaches but maybe those were caused by sinus problems. I was prescribed the 8 week treatment plan due to my low viral low- 200,000 and I just had my first blood test after starting the pill so I will know in two weeks if it is working and how well. I am hopeful for the cure. Overall I am so happy Harvoni came along. I was diagnosed 6 years ago but prob had it for 20-30 years before finding out. My last biopsy 3 years ago had my fibrosis at level 3 damage. Due to other health problems my doctor and i decided to wait for this easier treatment. Good luck to all of you!

Mugwump · « **Reply #557 on:** January 09, 2015, 10:49:32 am »

Quote from: Roger on January 08, 2015, 09:12:43 pm

Tutu,
What does that mean?
The scaring is spread throughout the liver, not just in one place.
My doc said all stages will heal, and I just assumed that it meant
the new replaces the old dead tissue - but now I'm not sure of this.
How does it work?

The liver is similar to a mesh net in structure. It is held together by connective tissues that hold all the blood vessels in a web. What happens is the mesh that holds the structure together stiffens and has constrictions and imperfections from scar tissue damage caused by cell death.

The only testing that can be done for permanent liver damage is done by comparative imaging of the blood flow patterns differences from a normal liver and even so testing is not really that conclusive. Function levels can return and some people on the verge of complete liver failure can and do recover to live normally.

Thus the testing done by chemical assay, ALT etc are only a good indication of the level of current functions of the organ not the overall capacity of the liver to heal itself.

How well a liver will heal after it is free from any damaging disease or influence like chronic drug and alcohol abuse will differ in people and is not something that anyone can quantify in a general way.

Here is hoping we all find out how well our livers can heal in 2015

Eric
Edit
PS My VL count just came in >15 so I am going steelhead fishing and will stop thinking about my liver. Harvoni is a working another test right now could easily read ND.

But this thread was about side effects from Harvoni to me the side effect of getting the news about the virus being almost undetectable is a side effect I feel very good about reporting!

Roger · « **Reply #558 on:** January 09, 2015, 12:38:18 pm »

Quote from: Mugwump on January 09, 2015, 10:49:32 am

The liver is similar to a mesh net in structure. It is held together by connective tissues that hold all the blood vessels in a web. What happens is the mesh that holds the structure together stiffens and has constrictions and imperfections from scar tissue damage caused by cell death.

Eric,
Thanks for the explanation. Does the scar tissue get replaced by new tissue and if so, does the old scarred tissue dissolve away? (there's only so much room in there, one would think)

Katie · « **Reply #559 on:** January 09, 2015, 01:54:11 pm »

Quote from: Mugwump on January 09, 2015, 10:49:32 am

The liver is similar to a mesh net in structure. It is held together by connective tissues that hold all the blood vessels in a web. What happens is the mesh that holds the structure together stiffens and has constrictions and imperfections from scar tissue damage caused by cell death.

The only testing that can be done for permanent liver damage is done by comparative imaging of the blood flow patterns differences from a normal liver and even so testing is not really that conclusive. Function levels can return and some people on the verge of complete liver failure can and do recover to live normally.

Thus the testing done by chemical assay, ALT etc are only a good indication of the level of current functions of the organ not the overall capacity of the liver to heal itself.

How well a liver will heal after it is free from any damaging disease or influence like chronic drug and alcohol abuse will differ in people and is not something that anyone can quantify in a general way.

Her is hoping we all find out how well our livers can heal in 2015

Eric

Good job on that description, Eric. Thanks for explaining as I have found the unknown the very worse thing to deal with! 2015 is going to be life changing for so many HEPC infected folks and it can only get better each year moving forward. It is such a big deal, and I am surprised we don't hear more about it!

Katie

Mugwump · « **Reply #560 on:** January 09, 2015, 03:07:07 pm »

Quote from: Roger on January 09, 2015, 12:38:18 pm

Eric,
Thanks for the explanation. Does the scar tissue get replaced by new tissue and if so, does the old scarred tissue dissolve away? (there's only so much room in there, one would think)

Roger I really do not know, but I suspect the levels of connective and vascular tissue regeneration possible varies from individual to individual.

Katie · « **Reply #561 on:** January 09, 2015, 03:20:29 pm »

I am sure there is regeneration to some extent as the good tissue of the liver will be able to do it's work of detoxifying the body. Remember a liver transplant can be a small portion of a healthy liver so even if there is some tissue damaged from cirrhosis, the improvement should be very noticeable and positive. The human body is remarkable and it will be years before they know all of the benefits this will have for patients. The big deal is continuing a good healthy life style to ensure the liver isn't once again compromised with bad choices and can continue it's healing and repairing. Just my feelings about it and I am feeling very good with the future for everyone regardless of their present condition.

Katie

BG42 · « **Reply #562 on:** January 10, 2015, 06:38:35 am »

Quote from: lucy321 on January 09, 2015, 09:34:20 am

I've been on Harvoni for two months and have one more dosage to go. So far so good.
Insurance coverage is a night mare and the specialty pharmacy is an even bigeer nightmare... they suck. anyway...

Lucy,

Did you have to go through AETNA's Specialty Pharmacy? My coverage is through AETNA, and my GI Doc said (after prescribing) that the next step would be the specialty pharmacy would call me when I was approved. That was 4 weeks ago and I still haven't heard anything. Naturally, I'm skeptical.

Keeping on topic with side effects, I have been reading these posts and see that some of you take your dose at night, and some in the morning. Do you make that decision on how your body will react to the medication? I was looking up pros/cons of taking Harvoni in evening vs. in morning. I'm an early bird (hence me posting at 6:38 am on a Saturday), so I would imagine I would take in the morning when I'm used to taking vitamins anyway.

Lynn K · « **Reply #563 on:** January 10, 2015, 06:47:28 am »

If you haven't heard anything yet you might consider calling your prescription drug provider. It seems like we don't get our meds unless we are proactive. I had a nightmare experience with express scripts they denied Harvoni initially. I finally found a contact email address and sent them a polite but strongly worded email. I had the meds in hand 2 days later.

As far as when just go with when you know you will consistently be able to take them at around the same time every day.

As for me I'm on the west coast and it is 3:45 AM so this night owl says good night to the early bird.

Good luck
Lynn

kate0b1 · « **Reply #564 on:** January 10, 2015, 06:53:55 am »

@BG42, good morning, I am also a morning bird. I take mine in the am along with my vitamin, mostly so I won't forget it, the bottle is sitting next to the coffee pot. I think some people have had fatigue and they may be taking it night. The first week I had some but it was the holidays so crazy busy anyway. I have been sleeping really well (a lot of dreams, but not bad ones). And as far as your meds, all of these meds go through a specialty pharm. Please find out from your insurance who yours is (i.e., I have BC and we go through carmark). When i did triple therapy, my doc's office went through a different one and caremark let it go through for one month then took over). when i started this med, i made them start with caremark/cvs so i would not have a problem. If you have a really stick pharmacy plan, they may let it go through but your co-pay could be much different.

JoeK9999 · « **Reply #565 on:** January 10, 2015, 07:21:29 am »

For any of you that have to deal with Express Scripts:

I had a problem with Express Scripts and emailed David Queller - VP Sales & Account Management. It was resolved quickly after that.
DQUELLER@express-scripts.com

D Fischer · « **Reply #566 on:** January 10, 2015, 08:45:45 am »

Hi all I started the Harvoni on 1/1/15 and can honestly say there have been little or no side effects from the treatment. I have had a couple of really light headaches that i am attributing to hunger more than the Harvoni. No fatigue to speak of I have been hitting the gym after work as usual 3 times aweek (35-45 minute cardio then weight machine circuit) with no loss of energy. when I read the side effects chart (pasted below) it states that 16%-18% report fatigue I am interpreting that to mean 84- 82% do not get this and that is the same for headache (11%-17%) 89-83% do not get this. I am guessing that I am falling in with the majority of the people in the trials. About me I am 60 yrs old have had Hepc since the late 90's no longer use tobacco or alcohol, I am an occasional light cannabis user and have never had any symptoms. Can anyone expound on this?

Table 2 : Adverse Reactions (All Grades) Reported in ≥ 5% of Subjects Receiving 8, 12, or 24 Weeks of Treatment with HARVONI
    HARVON I8 WEEKS
N=215   HARVONI 12 WEEKS
N=539   HARVONI 24 WEEKS
N=326
Fatigue   16%   13%   18%
Headache   11%   14%   17%
Nausea   6%   7%   9%
Diarrhea   4%   3%   7%
Insomnia   3%   5%

goodbyehepc · « **Reply #567 on:** January 10, 2015, 09:56:47 am »

Quote from: mario555 on January 07, 2015, 08:34:38 am

Strange side effects for me. As I am finishing my 8 weeks out of 24 I have noticed something strange. Please do not laugh! I've had problems over the last 15 years with a growing case of hemorrhoids, let's say 6 out of 10 for severity. It's now at a level 1,almost disappeared! Now I want to know if any of you had an improvement for any kind of blood pooling may it be in your ankles, hemorrhoids or other? Sorry again for introducing this subject....
To Lynn K. Thank you for your talk of last week about my poor behavior. It did some good! I was in a large mall yesterday and saw a Ben and Jerry booth. Decided to get myself that big sunday. As I was waiting my turn, I thought of you and other members who have been super careful with their nutrition and as I approached the counter I started feeling guilty and thinking of the damage the scrumptious sunday would do to my liver. I left the counter without the sunday....
At the start of my 9 week I have very little side effects. My health is generally improved and I can't feel my liver anymore which is wonderful. To all the newcomers, don't hesitate to start the treatment. Kudos to all the people that suffered those 48 weeks of interferon, you have been way tougher than me!

mario555
Not so strange. hemorrhoids have to do with several things, age, and diet are big ones. But with someone who has Hep C it makes sense they are disappearing as your body is becoming free of Hep C your liver will operate better , I too have found improvement on my digestive system overall. SO it makes sense the disappearance of your hemorrhoids. If you google the functions of the liver and how it works with foods and connects to the digestive process you'll understand why people with hep c become sensitive to foods that are high in bad sugar, fat and gluttonous grains. I have found that my body can deal better with a diet that is low on grains (i'm in my fifties and have been told less inflammatory foods is better), less carbs and low fat diet. Simply put, the less of those things in my body the less work my liver had to do. In fact, prior to beginning treatment my viral load actually went down from 2 million to 1.6 million and then 1.3 million. I had incorporated juicing into my diet the past two years. That has helped my health tremendously. Instead of taking a multivitamin I would add a green juice daily to my diet to get extra vitamins. Even with the hep c gone I continue to juice (though I do not do it daily as much).
GHC

Roger · « **Reply #568 on:** January 10, 2015, 01:20:08 pm »

Quote from: kate0b1 on January 10, 2015, 06:53:55 am

@BG42, I am also a morning bird. I take mine in the am along with my vitamin, mostly so I won't forget it, the bottle is sitting next to the coffee pot. I think some people have had fatigue and they may be taking it night.

Kate, are you taking the pill with food? In Europe the Gilead instruction sheet says 'take with food'. In the USA the FDA did not say that. I called Gilead and they explained this to me, and then said that they do 'recommend' that it is taken with food at approx the same time daily. I take mine right after I eat, in the morning...

Roger · « **Reply #569 on:** January 10, 2015, 01:25:32 pm »

Speaking to fatigue, headaches, and the other little side effects... I think they are a symptom of the dragon dying. I'm in my 8th week and feel better than I have in years!

When I was 60, I was in my GP's office discussing some things. I brought up that my joints hurt constantly. She said, 'You're 60! Get use to it!"... so I just took for granted that joint pain came with age.

This last week my joint pain is 85% gone. Really! and that foggy mind, sluggish body (liver?) feeling is 85% gone too. I took my doc's advice and am just taking things easy during Tx (no more manual labor in the garden) and the further into Tx I get - the better I feel. It is amazing.

I have had the HCV blues for so many years, that I thought that's how 'everybody' feels! WOW!

kate0b1 · « **Reply #570 on:** January 10, 2015, 01:28:18 pm »

roger, I take mine right before i walk out the door for work, before I eat, but I eat usually a bagel with cream cheese for breakfast almost everyday (before anyone jumps about the full out carb meal, i eat nuts, cheese and an apple for lunch). My PA said it docent matter like the old meds, but i don't like to wait to long to eat after taking it. The old meds I had to eat 20gms of fat with (i may never eat peanut butter again). and I have found if i wait to long to eat on the w/e i get a little queasy.

kate0b1 · « **Reply #571 on:** January 10, 2015, 01:31:21 pm »

I had some achy old bones before my first tx and crazy achy old bones during last tx (thanks interferon and riba), i have been feeling so much better even just 3 weeks into this, its kinda amazing (maybe we will all be like the movie where they all get younger lol)

Roger · « **Reply #572 on:** January 10, 2015, 01:40:24 pm »

Quote from: Lynn K on January 10, 2015, 06:47:28 am

If you haven't heard anything yet you might consider calling your prescription drug provider. It seems like we don't get our meds unless we are proactive. I had a nightmare experience with express scripts they denied Harvoni initially.

I don't understand why a specialty pharmacy would be hard to deal with. Can someone explain this to me? They are getting paid to do some paperwork and get the pills into FedEx. Why should they hassle a customer?

My doc gave me 2 names on their list, I choose Walgreen's Specialty Pharmacy, and made contact with them. They were absolutely wonderful! Friendly, helpful, just like they should be... they are getting paid just like the pharmacy on the corner after all.

Strange thing happened though... Bottle #1 was from Walgreen's.

#2 - I got a call from a small family pharmacy in my town telling me that my prescription is ready for pick up. I picked it up. The next day I got a call from Walgreen's Specialty telling me they are going to FedEx me #2! I told them to hold it, etc, as I already have it.

#3 - Same situation. This time I called my insurance company the following day and asked them if my deductible is paid, since Gilead pays it... It was not. He said , 'why would it, this bottle isn't scheduled to be shipped until the 17th'! I told him that I already have #3, and he nearly flipped out! Too bad. What's up with that system?

Katie · « **Reply #573 on:** January 10, 2015, 02:26:20 pm »

Kate: You are funny! I am feeling younger and better than years. When I would complain about not sleeping or fatigue, friends would tell me it is just part of getting old! I refused to believe it. I take no other medication other than Harvoni and always slept like a rock, up until about 8 years ago...maybe longer...My insomnia got worse and for the past 5 years I was deprived of sleep. It used to irritate me when they said this as it wasn't just being tired, it was horrible fatigue where my joints were so weak, and I had to force myself to do every little thing and I fought it and did more than many of my "healthy" friends to keep my sanity. Since the first week of taking Harvoni, I am sleeping, and dreaming and I wake up feeling good without brain fog. My spark is back. I am happy and take joy in little things. I feel younger. The bags under my eyes are basically gone. We have all been suffering because our liver hasn't been detoxifying our body. We've been slowly poisoned and now, instead of being compromised and working against the virus the liver is able to do it's job. It is miraculous and the difference is incredible and we aren't even cured yet! I can concentrate and focus and my mind is clear. So yes....we are younger, and I am so grateful! For those with cirrhosis, suffering with side effects, I believe you will get there too but it is understandable it will take longer so don't give up or let it get you down.

BG: I take my pill a couple hours before I go to bed. I figured that way it gives it restful time to do it's work and I am not unknowingly taking something that works against it with teas or supplements or even food. It's been working for me and my sleep improved almost immediately.

I have lots of joint issues due to the field research I did which required hard physical labor, so I don't think any improvement will be seen from the treatment, but who knows. That would be a bonus. My arthritic knee is feeling better but I had a Synvisc shot a couple months ago which usually gives me some relief for about 6 months. No improvement on my lower back or my wrists.

Enjoy your day! Life is good and getting better all the time

Katie

goodbyehepc · « **Reply #574 on:** January 10, 2015, 03:23:36 pm »

Quote from: kate0b1 on January 10, 2015, 01:31:21 pm

I had some achy old bones before my first tx and crazy achy old bones during last tx (thanks interferon and riba), i have been feeling so much better even just 3 weeks into this, its kinda amazing (maybe we will all be like the movie where they all get younger lol)

Hahahahaha That's exactly what I've been thinking "Cocoon"

audreywald · « **Reply #575 on:** January 10, 2015, 04:47:03 pm »

Quote from: Roger on January 10, 2015, 01:20:08 pm

Kate, are you taking the pill with food? In Europe the Gilead instruction sheet says 'take with food'. In the USA the FDA did not say that. I called Gilead and they explained this to me, and then said that they do 'recommend' that it is taken with food at approx the same time daily. I take mine right after I eat, in the morning...

Quote from: art1951 on October 25, 2014, 01:43:09 pm

I am new to the forum and started taking Harvoni on October 17th. Is anyone else taking it and experiencing any side effects? I am getting daily headaches and fatigue when I first take the pill in the evening. The fatigue seems to be letting up during the day. I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million. AST 75, ALT 93

Thanks, Art

audreywald · « **Reply #576 on:** January 10, 2015, 05:56:00 pm »

I am on Harvoni 9 days. very tired, queasy, but the worst is ... lets just say I am wearing an adult diaper. Out of clean sheets.

Does ANYONE know id Imodium is safe? I called the people at support solutions and they told me to call my doctor. Which I will try but I just took 1 Imodium? they're really not adult diapers; I have a very chunky 11 year old autistic grandson who is not potty trained. I can get it on but it's cutting into my hips something awful. I would really appreciate any experiences anyone might be willing to share.

Lynn K · « **Reply #577 on:** January 10, 2015, 06:36:44 pm »

Hi Roger

"I don't understand why a specialty pharmacy would be hard to deal with. Can someone explain this to me? They are getting paid to do some paperwork and get the pills into FedEx. Why should they hassle a customer?"

They are getting paid by the companies they provide the meds for to keep costs down. Express Scripts has been denying patients right and left for Harvoni stalling until Viekira Pak was approved so the could make the preferred provider and block Harvoni and Sovaldi.

They will still provide Harvoni for the patients who were already on Harvoni and those that cannot take Viekira Pak.

Basically the prescription drug providers are taking medical decisions out of the hands of doctors and putting them in the hands of bean counters.

Exclusive: Express Scripts presses for expansion of drugs it won't cover

http://news.yahoo.com/exclusive-express-scripts-presses-expansion-drugs-wont-cover-181705898--finance.html;_ylt=AwrTWVVZtrFU9HAAOfjQtDMD

Express Scripts drops Gilead hep C drugs for cheaper AbbVie rival
http://news.yahoo.com/express-scripts-cover-abbvie-hepatitis-c-drug-drops-050323412--finance.html;_ylt=AwrTWVVZtrFU9HAAWvjQtDMD

I was basically on the edge of angry, frustrated, tears asking if they were waiting for me to die of if they would prefer paying for the complications of advancing cirrhosis, a transplant and anti-rejection drugs for the rest of my life assuming I am able to get a transplant and survive the procedure.

Not a fan of express scripts

Roger · « **Reply #578 on:** January 10, 2015, 09:27:41 pm »

Lynn,
My point is, the Specialty Pharmacy gets their profit/commission no matter what (don't they?). The insurance companies dictate what they will pay for (with our money) and if the insurance has said "ok", why the heck would a vendor care if the insurance decided to spend the money? That makes no sense to me.

Lynn K · « **Reply #579 on:** January 10, 2015, 09:56:36 pm »

As I understand it the treatment protocols are established by the prescription drug providers. They are in fact insurance for prescription drug coverage.

I went several rounds and many phone calls with Express Scripts. One time the person on the phone at express scripts said it was BCBS who established the approved drugs. So I called BCBS they said no that is Express Scripts call. They are the contracted providers for providing prescription drug coverage (ie Insurance) they keep those that contracted them by happy keeping costs down thus maintaining their relationship and not fired and replaced by another prescription drug provider.

When I did finally get to someone in authority she said she is a manager at Express Scripts/Accredo. She was the one who approved my medicine. Not Blue Cross Blue Shield.

At least as how I understand it. There have been numerous posts by people fighting with their prescription drug providers to get Harvoni.

Doesn't make sense to me either

JoeK9999 · « **Reply #580 on:** January 11, 2015, 06:00:55 am »

List of my Side effects throughout treatment:
I am on my 12th and final week of Harvoni with 5 more pills to take.
I don't know for sure if these are Harvoni related, but this is what I experienced.

Week 1 - Had a tiny blister on thumb that turned into a huge blister and
red painful streaks ran up my arm through my lymph system. Doctor gave me 10 days of Keflex which cleared it.
Weeks 2 through 6 - Felt great, no fatigue or stomach indigestion.
Weeks 6 - 9.5 - Fatigue and stomach indigestion.
Weeks 9.5 - through 11 - Felt pretty good. A little fatigue.
Week 11 through now - A lot of dizziness, a little fatigue. No more stomach indigestion. Just noticed red palms are not as pronounced. A note on reddened palms. I have 2 friends that are both cured from prior treatments and they still have reddened palms.

kate0b1 · « **Reply #581 on:** January 11, 2015, 06:49:20 am »

ahg @joek, I'm a little jealous you only have 5 days left, I can't even wait to be able to say that. Are you having labs @ EOT or just the 12 weeks out?
@audreywald, this may sound weird but could you try increasing your fiber in your diet, a few years ago my dog had some bowel issues and the vet said to try pumpkin, it has a crab ton (no pun intended) of fiber in it, I just mixed it with her food but maybe you could make muffins or something with it. Imodium gives me a stomach ache for some reason. I did however have a stomach ache yesterday, I think maybe from not drinking enough water (w/e coffee girl here), after i drank two glasses of water it went away.
@goodbyehepc, thanks for remembering the name of the movie for me, still some brain fog here lol.

kate

JoeK9999 · « **Reply #582 on:** January 11, 2015, 07:46:41 am »

Kate - I had a CBC and Hepatic Panel blood draw 2 days ago at the 11 week mark.
My next test is 12 weeks out after EOT. We all go through the stress in the back of our minds, but it is based on different types of past treatment stats. My first month on Harvoni, I was on cloud nine with no doubt about a cure. The stress started half way through.

I feel like there is no reason why I won't be cured as I took every pill and that
that is how everyone one else on Harvoni should feel also. As long as you take all the pills and stay away from anything that could re-infect you or run your body down, then the cure is in sight!

If you really look closely at the results only <1% of the people that were followed relapsed. The rest in that group they showed as without SRV were "lost to followup". So no one knows what happened with them. Have a great day and a healthy life.

BG42 · « **Reply #583 on:** January 13, 2015, 06:42:22 am »

Hello everyone! All'a quiet on the thread!

I found out my delay in the insurance company approving comes from them telling my doctor they think I should have an 8 week treatment. Obviously they do not want to pay for another 4 weeks.

The good news is the ball is rolling, and at least I know I will at least be able to have an 8 week treatment. But I naturally worry that 8 might not be enough. I read that the guidelines for some insurance companies state that if your VL is under 6 mil, they will pay for 8 weeks of Harvoni. They will pay for 12 weeks if it is above 6 mil.

I apologize if this is the wrong thread for this question, but have you guys experienced exploring 8 weeks of treatment versus 12 weeks of treatment? Is anyone on 8?? I just don't want to do it "part way" and not be cured.

Lukey · « **Reply #584 on:** January 13, 2015, 07:18:46 am »

I'm on for 8 weeks. I think it was determined by my gastro MD for 8 weeks, based on my 5.1 million VL, general state of liver health, as well as possibly my weight. Ppl with cirrhosis need to be on it longer, I think.

JoeK9999 · « **Reply #585 on:** January 13, 2015, 07:18:59 am »

BG42 - I was initially supposed to go on the Harvoni 8 week treatment. At week 4, I was still detected which may or may not matter as many have reported detected at 4 weeks. And at least one at 6 weeks and still cured with 12 weeks treatment.
Also my VL was 3.8 million, gen 1a, but the pre-treatment VL test was done 3 month prior to treatment.

I was switched to the 12 week plan and now down to my last 3 pills.
There are many on this forum on the 8 week plan and I 'm sure the results will be great. My thinking is like yours and I didn't want to chance it, so I pushed for 12 and got it.

Lukey · « **Reply #586 on:** January 13, 2015, 07:23:26 am »

Joe, how has your blood work changed so far? UD yet? If so, when did you first get your UD status?

JoeK9999 · « **Reply #587 on:** January 13, 2015, 07:34:35 am »

Lukey - I am not getting another VL until 12 weeks after EOT.
Everyone in the trials were undetected at 8,12,24 EOT.
I also read one S/O patient post that was <15 still Detected on the day of his last
medication and 3 months later was Undetected. I don't really care about anymore tests until the 12 week and 24 after treatment is over. Those are the only one's that count.
As I keep saying, if you take all your meds, and live healthy,there is no reason why you shouldn't be cured.

art1951 · « **Reply #588 on:** January 13, 2015, 08:30:50 am »

I took my last pill yesterday and had blood test drawn. I will let everyone know if I see changes over the next few days as the Harvoni clears from my body. I am still getting mild daily headaches but manage them with one or two Tylenol a day.
I should get the blood results within 5 days or so but was undetected at 6 weeks and don't expect much to change.
Starting the 12 week countdown to EOT results.
Thanks,
Art

Lukey · « **Reply #589 on:** January 13, 2015, 08:41:48 am »

Quote from: JoeK9999 on January 13, 2015, 07:34:35 am

Lukey - I am not getting another VL until 12 weeks after EOT.
Everyone in the trials were undetected at 8,12,24 EOT.
I also read one S/O patient post that was <15 still Detected on the day of his last
medication and 3 months later was Undetected. I don't really care about anymore tests until the 12 week and 24 after treatment is over. Those are the only one's that count.
As I keep saying, if you take all your meds, and live healthy,there is no reason why you shouldn't be cured.

Congrats. I hope to be in your same status someday soon.
I live very healthy but I do seem to need my magnesium to help keep my bowels moving along. I'm hoping this will not affect my Tx.

Joe

jayme1017 · « **Reply #590 on:** January 13, 2015, 09:10:14 am »

Lukey,
I don't think you are supposed to be taking Magnesium with Harvoni..if you do they recommend 4 hours before or after the dose. Check with doc??!
Jayme

Lukey · « **Reply #591 on:** January 13, 2015, 09:17:13 am »

I take it at least 4 hours away from Harvoni. They know I take it.
I'll call Gilead and see what they say about it.

The trouble is, most people are woefully deficient in Magnesium, and it's not something I think we should avoid. It's possible the constipation I had was from Harvoni, I'm not sure.

jayme1017 · « **Reply #592 on:** January 13, 2015, 09:24:13 am »

oh sorry...obviously you would have checked into it

I have wanted to take something for my gaseous stomach lately which started at week 4 (one week ago) but have just avoided taking anything more because I am paranoid than anything else. I was told it was ok to take Tums, GasX, or immodium as long as it was 4 hours apart. I am hoping the gas is due to my improved digestive system now that my liver enzymes are in normal range...

mario555 · « **Reply #593 on:** January 13, 2015, 09:24:57 am »

To all the ones finishing their 8-12 weeks treatment. Please let us know your VL at week 4 and 12. I'm on week 9 out of 24 and would love to "foresee" what will happen!!
After 9 weeks I have no more strong side effects. I just can't wait to be finished with the treatment...

JoeK9999 · « **Reply #594 on:** January 13, 2015, 09:59:25 am »

Mario and all:
For the last several years I have been
working on software project for the insurance industry. It's all statistical based
software to show risk. Two things I have learned: 1.) Insurance companies are only interested in increasing their profits.Customers come second.
2.) Based on the statistical information I work on, Harvoni's stats pretty well prove you will be cured if you take the pills for the required time frame.
You have to look at the available stats very closely. Included in the non SRV
are patients that were "lost to followup" and they were the most. In my work I would have just thrown them out completely, but Gilead included them in there overall %'s.
Anyone that doesn't get cured with this drug will be a medical marvel and only give the researchers more incentive to find the variables that were not considered and find a new method to cure the few medical marvels. Like someone else said in a previous post "I have never been in the top few percent of anything, why should anything change now?" I doubt we will see many if any medical marvels on this Harvoni forum as everyone here is dedicated to taking there meds and being cured:-)

Doluska · « **Reply #595 on:** January 13, 2015, 10:04:25 am »

Totally agree! Good post: we need more of this kind of info! Thank you!d

JoeK9999 · « **Reply #596 on:** January 13, 2015, 10:17:00 am »

The stats in tabular form are here:

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Mugwump · « **Reply #597 on:** January 13, 2015, 11:35:41 am »

Quote from: audreywald on January 10, 2015, 05:56:00 pm

I am on Harvoni 9 days. very tired, queasy, but the worst is ... lets just say I am wearing an adult diaper. Out of clean sheets.

Does ANYONE know id Imodium is safe? I called the people at support solutions and they told me to call my doctor. Which I will try but I just took 1 Imodium? they're really not adult diapers; I have a very chunky 11 year old autistic grandson who is not potty trained. I can get it on but it's cutting into my hips something awful. I would really appreciate any experiences anyone might be willing to share.

I would be very cautious about the use of Imodium on this treatment as holding back fluids if you are not experiencing dehydration is not a good idea. Yes let Gilead and your doctor help you make the decision.

I hope you get over it soon! I did have one episode of the trots and because of the number of trips to the john to pass water I seriously considered temporarily getting a poo chair or at least a chamber pot to put next to the bed. Thank heavens my spouse is an understanding and caring individual as my sleep pattern is still out of wack.

Things are however getting better at week 6 and I am now capable of sleeping for more than 2-3 hours at a time.
I don't think this situation is directly due to Harvoni, but there is no doubt that the sudden extra hydration necessary for this treatment to work can change bowl movement frequency in some people.

Funny but as a child in the 1950's and 60's in some places we lived there were chamber pots, because heading out to the outhouse in winter was worse. So a step back in time dealing with difficulties can be very useful.

A more modern suggestion might be to get a portable RV style toilet that can be in the same room where you sleep if that might work for you.

Kind Regards
Eric

Bob V · « **Reply #598 on:** January 13, 2015, 12:14:48 pm »

Hi guys I posted this yesterday on my own thread but I guess I should of posted it here. Thanks for all the great input on this thread.

Add to the post I did 5wks labs today, so just waiting now to see if I'm UD.

Bob V
Member
Posts: 10

My take on Harvoni day 35
« on: Yesterday at 12:06:04 PM »
QuoteModify
My 411
I'm 62 retired and have a low stress life. I'm an endurance athlete and spend most mornings swimming, biking or running. Knowing I was going to start treatment I cut way back on my training. I still SBR every morning but nice and easy.

I nap most afternoons. I'm very in tune with how my body is feeling, almost to an obsession. I take my Harvoni at noon every day. So I think my symptoms are most likely related to Harvoni.

Pre Harvoni on a 1-10 scale 10 feeling great, I was at 9-10 most days. Now I do get slight headache's but the biggest thing is the fatigue. I'm always tired and I feel like I'm coming down with a cold. This isn't a big deal because I can just do nothing if I want, my wife is great with this.

For the people who have to work, I know you have it tougher try and hang in there it's only 12wks. We can best this.

Good luck everyone.
-------------------
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014

dragonslayer · « **Reply #599 on:** January 13, 2015, 03:49:06 pm »

Quote from: Mugwump on January 13, 2015, 11:35:41 am

I would be very cautious about the use of Imodium on this treatment as holding back fluids if you are not experiencing dehydration is not a good idea. Yes let Gilead and your doctor help you make the decision.

I hope you get over it soon! I did have one episode of the trots and because of the number of trips to the john to pass water I seriously considered temporarily getting a poo chair or at least a chamber pot to put next to the bed. Thank heavens my spouse is an understanding and caring individual as my sleep pattern is still out of wack.

Things are however getting better at week 6 and I am now capable of sleeping for more than 2-3 hours at a time.
I don't think this situation is directly due to Harvoni, but there is no doubt that the sudden extra hydration necessary for this treatment to work can change bowl movement frequency in some people.

Funny but as a child in the 1950's and 60's in some places we lived there were chamber pots, because heading out to the outhouse in winter was worse. So a step back in time dealing with difficulties can be very useful.

A more modern suggestion might be to get a portable RV style toilet that can be in the same room where you sleep if that might work for you.

Kind Regards
Eric

Can you please provide evidence for your statement that Harvoni requires extra hydration to work? I see nothing about it in the detailed prescribing document, but maybe I missed something.

Forums Index

Welcome

Author Topic: Harvoni Side effects (Read 2192421 times)