Author Topic: starting Harvoni (Read 17076 times)

red · « **on:** April 25, 2015, 01:16:06 pm »

Just started my second day of Harvoni. I've been researching this drug, and have gotten very good info, seems that it is a miracle drug. My insurance denied me, so my Dr. we t through the pharmacital co and I got my first bottle shipped via FexEx. I'm happy that I found this forum and can go thru my journey with people that understand.

BubbaT · « **Reply #1 on:** April 25, 2015, 02:29:41 pm »

Welcome to the Forum Red,

It's good to be treated and get rid of this virus, keep us posted on your progress...

GLCII · « **Reply #2 on:** April 25, 2015, 03:01:23 pm »

Hello Red

You've deffinilty come to the right place. Just about everyone here has been to Hell and Back, more than once, with the virus and treatments. If anyone can understand, it's the people here.

Good Luck and keep us posted.

sabre · « **Reply #3 on:** April 25, 2015, 03:20:17 pm »

Today is day 29 for me on Harvoni and I feel better than I have in a long time.

Good luck to all!

atomic dog · « **Reply #4 on:** April 26, 2015, 02:55:54 pm »

Red, Harvoni has an overwhelming success rate, mid to high 90 percentile depending on your condition. So the odds are with you. Eat well, drink lots of water, rest whenever possible. You may experience side effects. Most of those come and go. Sorry to hear that you were denied insurance coverage. Keep battling--a lot of us have had to advocate for ourselves and work the system. You've taken the first steps on a crucial journey toward better health. There's no turning back.

red · « **Reply #5 on:** May 29, 2015, 01:37:32 pm »

Week 5 lab results showed it was non detected so ya for me. Good luck to all out there that is on this wonderful treatment and God Bless

grateful908 · « **Reply #6 on:** May 29, 2015, 11:10:13 pm »

Hello All.... I too am starting Harvoni. I recieved my first 28 day supply on Thursday, but due to a Coast Guard Boaters Certification, I'm going to wait till Sunday to start. I've been waiting 6 years for something better than the previous treatments, and Harvoni sounds like it. It took me 4 months with insurance, but once I threatened to go to EyeWitness news, my Congressman, the state Ins. Commision, I recieved a call the VERY NEXT MORNING, saying I was approved. I'm kinda bittersweet now, due to the side effects I've been reading about, but I'm very excited about the 99% cure rate. I had a biopsy @ 5 years ago, with no cirrosis. I've had the fibrosure test and I'm stage 3? and my viral load is 6 million, give or take 100K. I don't take any illegal drugs ( not anymore for 10 years ), I drink beer, especially during football season. I'm a blue collar lunch pail kinda guy, I work hard and love to travel. I've seen the Grateful Dead in 38 states and 3 countries, so it's a wonder I only have Hep C. I also take Simvastatin for cholesterol, and Losartan for blood pressure. I really don't know what to expect, there are so many conflicting side effects reports. I guess it really does depend on the individual. However, I will lean on all of you throughout this little adventure. And I will give encouragement, angst or whatever it is I'm going through. Anyone, please feel free to E-Mail me @ grateful908@gmail. I welcome any advice, suggestions, criticisms,warnings, laughter ( everybody remember laughter? ) or whatever you feel I need to know. So in closing, I say, How ya doin???

KimInTheForest · « **Reply #7 on:** May 30, 2015, 12:57:18 am »

Hello grateful908, and welcome to the journey!

I am into Week 4 of 12 on Harvoni/Ribavirin. So far so good.

Good luck to you!

kim

red · « **Reply #8 on:** May 30, 2015, 12:20:03 pm »

Hello greatful 908 and welcome to the journey. QUIT drinking beer. Unfortunately our liver doesn't know the difference when it comes to alcohol, at least don't drink it while on the Harvoni treatment. I've had a close call where I thought I would have to stop treatment, but luckily my white blood count went down quickly. Good luck to you. This seems to be the miracle drug.

red · « **Reply #9 on:** May 30, 2015, 12:26:22 pm »

Week 5 lab results showed it was non detected so ya for me. Good luck to all out there that is on this wonderful treatment and God Bless

grateful908 · « **Reply #10 on:** May 30, 2015, 05:50:03 pm »

Hello Everyone. First I want to say you all sound so kind and encouraging, and I'm glad I found this site. As for drinking beer, I WILL NOT while I'm taking this medication. I understand the dangers and besides, my wife says NO BEER. So she wins. But all kidding aside, I really look forward to getting "cured", and living a long life. Thanks to Gilead, I now know that is possible. I look forward to hearing the trials & tribulations that everyone cares to share, and I DEFINITELY look forward to hearing all of the success stories and the joys that come with them. This is a "journey", no doubt, but one no one has to walk alone. Again, Thanks for your replies. My first pill is Sunday evening EST, so I'll check in in a couple of days. Have a good weekend, and keep the faith. Chris (grateful908)

Mike · « **Reply #11 on:** May 31, 2015, 12:18:32 pm »

In general, you should expect mild side-effects, as Harvoi is well tolerated by most.

Compared to 48 weeks of Interferon and Ribavirin, this should be a walk in the park.

Best wishes, Mike

Ledoc01 · « **Reply #12 on:** June 01, 2015, 01:39:17 am »

Best to all on the journey. Hey even if you DO have bad SE's it's only 12 weeks. Hell I could do about anything for that long....

There are many things far more unpleasant; my 1st wife for example...

keep smiling... the force is with us

grateful908 · « **Reply #13 on:** June 06, 2015, 11:02:14 pm »

Hello all... Started the Harvoni last Sunday. No real side effects to speak of, although I do have some stomach problems. Mostly the acid. I used to ( till last Sat') take 20mg. of omeprazole, but in researching Harvoni, they say not to take ANY kind of stomach acid reducer. This is due to the stomach acid breaks down the drugs in Harvoni, blah blah blah. Bottom line: NO ACID REDUCERS. I called Gilead help line and they recommended a prescription drug called CARAFATE. It coats the stomach, excellent for GURD, etc. Completely safe to take with Harvoni. I have a blood test Monday am, so I'll get my Dr. to prescribe for me. I'm starting to experiment with different foods for the "heartburn", and I find salads, yogurt, granola type foods doesn't bother me or make me feel bloated. I DO find that anything greasy, ( fried eggs, hamburgers, hot dogs, bagels w/butter,etc) definitely does not agree with me. Now, I can't say it's the fault of Harvoni, or the fact that I stopped the Omeprazole. I'm eating 5 small meals a day, instead of 3 regular meals. That helps. Other than that, everything has been very good. Anybody have any suggestions on what they did to combat the "heartburn"

And beware, I've been reading on other sites that people are taking Prilosec, etc. to combat the stomach issues. I just want to repeat, and make perfectly clear: NO TYPE OF STOMACH ACID REDUCERS. It's detrimental to your treatment. Change your diet, change your eating times, take CARAFATE, etc. But deal with it.
So, now that I'm off my soapbox, How's everyone doing??? I hope all is well with everyone, and keep in mind we're one day closer to end of treatment=cure. ( And one day closer to retirement )

Have a great tomorrow. Chris aka grateful908

KimInTheForest · « **Reply #14 on:** June 06, 2015, 11:42:38 pm »

Actually, Gilead's instructions on acid-reducers with Harvoni are: "If you take an antacid during treatment with HARVONI, take the antacid 4 hours before or 4 hours after you take HARVONI." Gilead does not advise a 24/7 ban on them. Just that window of 4 hours either side of taking Harvoni - when it could affect the ledipasvir that is sitting in the stomach.

See bottom of page 29 of Gilead's Patient Information sheet on harvoni:
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_patient_pi.pdf

I have had a couple of serious heartburn cases since starting my Harvoni/Ribavirin treatment 33 days ago. Fortunately my episodes do not come within that 4-hour window of taking Harvoni. In fact they come about as far away as you could get - 12 hours. So I just do my usual, which is baking soda in a cup of warm water. My trial nurse says that's fine (so long as it is outside the 4-hour window). And everything in the Gilead literature indicates it is as well.

I think you are right to try eating 5 smaller meals rather than 3 normal size meals, grateful908. That should help. And yeah, greasy food will probably be problematic while you are on treatment…

Best of luck to you grateful!

kim

grateful908 · « **Reply #15 on:** June 07, 2015, 12:35:22 am »

Hi Kim. They specifically told me not to take it. I have to call back and check on this further. Thanks for the quick reply. Chris

KimInTheForest · « **Reply #16 on:** June 07, 2015, 12:42:22 am »

Quote from: grateful908 on June 07, 2015, 12:35:22 am

Hi Kim. They specifically told me not to take it. I have to call back and check on this further. Thanks for the quick reply. Chris

If you get a chance, Chris, maybe ask Gilead if the information in their Patient Information Sheet about just avoiding antacids 4 hours either side of Harvoni is still correct. Or maybe antacids (like Tums) are different from "acid reducers".

best,
kim

grateful908 · « **Reply #17 on:** June 07, 2015, 12:50:37 am »

Hello Kim & Hello Everyone: I just phoned Gilead & I'm waiting for a return call in the morning. I just read the prescribing sheet and it does say it was OK if taken simultaneously under fasted conditions. I WILL GET TO THE BOTTOM OF THIS. Somebody gave me erroneous information, and they need to get their acts together! That is unacceptable from a drug manufacturer.

KimInTheForest · « **Reply #18 on:** June 07, 2015, 01:04:36 am »

Wow, you are really all over this Chris! Good for you!

If you have a chance (and I totally realize it is not your job to ask Gilead my questions) I would like to know if Gilead thinks milk is counter-indicated 4 hours before and after Harvoni, since milk is a reducer of stomach acid. I put milk in tea and on oatmeal in that 4-hour window.

I know I could call Gilead myself with my own questions. But since I am in a clinical trial being done for Gilead, and I REALLY like the care I am getting at the clinic monitoring the study group I am in, I don't want to do an end-run around them by going straight to Gilead with my questions. I have asked my trial nurse about antacids, and she told me what is in in Gilead's patient Info sheet - none for 4 hours either side. I did not ask her about milk.

kim

Ledoc01 · « **Reply #19 on:** June 07, 2015, 02:29:24 am »

Just thought I'd toss my 2 cents in here. I finished my 12 week Harvoni Tx on 5/16. I had/have some annoying issues that require me taking a PPI as well. 40mg of Omeprazole did it for a few years, then something went south hard. I was told various (and conflicting) things. Bottom line I switched to 60mg Dexiant and things mellowed out. Now when I started the Harvoni, I had to do a change up. Unless something has drastically changed in the past 3 weeks, here's the deal on taking a PPI. You CAN take a PPI under these conditions. You can only take 20mg of Omeprazole... this must be taken at the same time you take your Harvoni and should be taken while fasting. Now there are a couple of mild antacids which you can take (I think at the 12 hour mark) but the main one is the PPI.
My system was to go to bed and then wake up at zero-dark-thirty and take my Harvoni. I actually took it with a real acidic beverage concoction. That may be crazed but the one component likes a pH of <2.3. Anyway, I'd then go back to bed for 4 hours or so. The Harvoni hits it's max absorption at ~ 4-4.5 hours after ingestion. This way I could eat when I got up and I slept through the really nasty gut bomb about an hour after taking the pill. Good yogurt worked well for me as it gave my stomach some coating. I could also take a Tums if I needed to.

Now i my case, some of my worst side effects were from the conditions that required the PPI i the first place. It'll be interesting to see how that plays out as I now think the HCV and cirrhosis were the cause of my GI issues. At any rate, my gut still isn't back to normal but my senses tell me it's because there was war going on down there for 12 weeks. Anyway; I don't know what my end result is but based on my 4 week VL the odds are overwhelming that I'll clear. We shall see.

Best of luck with the Tx; remember..there IS light at the end of the tunnel and it isn't a train.

Deborah · « **Reply #20 on:** June 07, 2015, 11:52:05 pm »

Grateful908/Chris - I did 8 wks of harvoni earlier this year (success!) and you need to know that a number of us experienced a significant increase in blood pressure while taking it. Back to normal after it was done. So pay attention to that. And taking it at bedtime might help with stomach upset. And be sure to super hydrate! Otherwise, it should be a cake walk. Good luck!

red · « **Reply #21 on:** June 09, 2015, 11:25:09 am »

Greatful908/Chris..I did not know taking antacid pills were a no no. I take 40mg of protonix a day(outside the 4 hr window). That's what my Dr. Said. I get Harvoni FedEx from a pharmaceutical co that is paying for it and no informational pamphlet comes with it. My 5 week showed undetected, but now I'm concerned about the antacid pill weakening the effect of the Harvoni. Maybe I should just stop the protonix altogether, and tough it out ,like you. Have taken the carafate before for ulcers. Thanks for the info, Ginger

newyawka · « **Reply #22 on:** June 10, 2015, 10:13:22 am »

Hello to all my fellow warriors out there. I started Harvoni just yesterday so i have yet to feel any sides. I must say that i am really nervous about the treatment after reading the experiences of others on this site. I really dont know what to expect. I just reassure myself that everyone is different and that i might not suffer through bad side effects that others have experienced. But its nice to be aware of possible side effects. knowledge is power!
i'm new to this site and this is my first post. can someone explain to me the various abbreviations used when writing about hepc and harvoni? i realise that EOT means end of treatment. what are the other abbreviations that i should know? like TX (?). i'm assuming that TX is your treatment protocol? Great thanks to anyone who can help.

KimInTheForest · « **Reply #23 on:** June 10, 2015, 10:17:59 pm »

Welcome Newyawka! Don't worry too much in advance about sides. Wait to see what your own body does in response the the drugs. As you mention, everyone is different. Some people do seem to have some real problems, while others sail through with few or no problems. I am almost halfway through my 12 weeks of Harvoni+Ribavirin. And I still have not had any significant problems. And that's with ribavirin, which does cause anemia and other things. I have had little stuff here and there, but all manageable, nothing that has caused me any discomfort, and most issues disappear after 10-14 days.

As for abbreviations, yes there are a lot. Tx is treatment (although I think I have also seen it used for transplant). I myself am rather anti-abbreviation because I feel it is elitist and exclusionary. Not only are there many new members here, but there are hundreds or even thousands of unregistered guests who will not know what these abbreviations are. That is why in my sig file at bottom I write everything out in full instead of using the abbreviations.

Good luck to you on your journey!
kim

HR3367 · « **Reply #24 on:** June 16, 2015, 11:44:13 am »

Quote from: red on April 25, 2015, 01:16:06 pm

Just started my second day of Harvoni. I've been researching this drug, and have gotten very good info, seems that it is a miracle drug. My insurance denied me, so my Dr. we t through the pharmacital co and I got my first bottle shipped via FexEx. I'm happy that I found this forum and can go thru my journey with people that understand.

HR3367 · « **Reply #25 on:** June 16, 2015, 11:54:14 am »

I was just diagnosed w HepC. I'm waiting for mail any day now for paperwork on where I'm going for treatment. I'm assuming I will be given Harvoni. My fear is my insurance, Amerigroup(state Medicaid), will be a problem. I'm having major problems finding doctors in that network for other minor things w referrals, I'm afraid I will have problems getting treatment for HepC!!! My Dr claims that anyone he's dealt w in the past, never had any problems w insurance but this is same dr that gave me referral & list of drs that take my insurance for minor issues, and none of her listed drs are in my network. He obviously hasn't updated his lists. I'm praying I have no problems w getting treatment w Amerigroup. I need to live!!!

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