Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: christinad on March 03, 2015, 02:59:42 pm
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Hey everyone. Today is a big day for me. I just got back home from the gi and blood work. I took my first dose of harvoni. I am extremely scared and anxious. I hope everyone here is doing well and feeling great. I'd appreciate anybodys advice or kind workds. Thanks a million :)
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Hi, Please don't be scared! I finished a 12 week course and now my HCV is negative. All liver tests normal, even platelets. The side effects aren't bad, I just had some headache the first few weeks, some chills and felt feverish. Make sure you take time for yourself and give yourself rest! It is very strong but what a wonderful thing!
Karen
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Hi Christina, it looks like you and me are on the path to recovery, I took my first pill today and I'm doing alright! Except,
My hair turned green and my big toe hurts, but everything else is Fine! J/k
Humor is good when you been fighting the beast for 20 yrs like me, but I believe it's gonna be just fine, so hang in there... Keep us posted ...
God bless
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Hi, Please don't be scared! I finished a 12 week course and now my HCV is negative. All liver tests normal, even platelets. The side effects aren't bad, I just had some headache the first few weeks, some chills and felt feverish. Make sure you take time for yourself and give yourself rest! It is very strong but what a wonderful thing!
Karen
Hey Karen, congratulations on being free from this thing, Wow, that is so awesome, I can't hardly wait to be
Free of this virus and get back to doing things I love, like fishing and saltwater.....
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That's amazing karen. I'm so happy for you!
im trying my best to relax. It's been about 3 hours since I've taken the pill and I am very itchy. All over. Driving me crazy.
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Hah bubba. Imagine that!
How are you feeling? Anything out the ordinary? I'm going for the 8 week treatment how about you? Hope it goes well for you and rid of the beast.
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Doing well, Christina this ain't so bad! Nothing to complain about.
I'm going 12 wks,
Were u able to use that coupon? My pharmacy would not take it, imagine that,
I was looking Forward to using that coupon. Copay was 35
I think everything is gonna be just fine....
I hate worrying about stuff I cannot control, don't u?
So, put in a post from time and we can encourage one another!
I haven't been fishing in about 2yrs, so I'm gonna be ready to go soon!
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I know nothing about a coupon. I got lucky and insurance handled everythinG. No copay. But that is messed up. Sorry about that. On the bright side though 35 is nothing compared to the whole price right?! I do hate worrying but I always think so negative. I will post , same for you too.
them fish better be ready for you!
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That's amazing karen. I'm so happy for you!
im trying my best to relax. It's been about 3 hours since I've taken the pill and I am very itchy. All over. Driving me crazy.
The itching is a rare side effect of Sovaldi. If it's really bothersome, take an antihistamine. I take Benadryl and/or Claritin for mine. And use some very good lotion. Just keep an eye on it. If you break out in hives, that may change things. Do report the itching to your Dr.
Try not to be nervous. Most people have minimal side effects. I'm a rare person that has a lot of side effects, but I'm still taking Harvoni anyways.
Change is scary. We're going through a huge change-freeing ourselves from a horrible disease. In a day or two, this will become normal and you will be able to relax!
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Hey guys,let me join the party, I started today, also. Oddly, I took my pill at 2p with food(suggested by pharmacologist for first dose) and have felt euphoric all evening. It might be that I was told 12/29 that my treatment would start 3/3 and I've been counting down the days!
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Jump in Motor, glad you're here....
We need a good mechanic!
Welcome aboard!
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Christina, never underestimate the power of a positive attitude, I wish I could bottle some of mine to send you. I feel so good to get this Harvoni in my body and start the war on hepC
Thx BubbaT! Yes to cure, No to side affects!
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I just completed pill #5 and I feel very expensive having ingested $5625 worth so far.
Other than that I feel lucky and grateful. No side effects. Not expecting any.
Appreciate this Forum and the help!
Good luck to all of us.
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I just started Harvoni on Monday, too! And I have buddies to go on the journey with me! I hope you don't mind if I call y'all that. Always overly friendly, I scare people sometimes. Hee hee!
I'm looking forward to this treatment of 12 weeks, excited that the length of treatment, milder side effects, and cure rate are so much more promising. And all this came about in the last 4 years! Wow!
This is not my first rodeo, having been on treatment twice already - Once with a nonresponse after 8 months, and another with a relapse in a study for 52 weeks with an experimental drug added to peg+rib. Both times, anemia sidelined me. First time, I had to use Procrit to keep the white blood cell count up. The second time, I had to tough it out with nothing to supplement the treatment because of the clinical study. My Ribavarin dose was reduced because of low hemoglobin numbers. I could barely get up the stairs! After all that, night sweats came back 2 weeks after the last pill, and I knew right then it failed. All that I went through, just for a 50\50 chance to cure.
So, here I am now. Am I here now? What? Just one pill and just 12 weeks? Really? Cure rate at 94%? Huh, what? Pinch me, it is so surreal, I must be dreaming!!!!!
So let's do this! I got my boots on! Make this the last steer rustled!
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welcome everyone, hope the journey is quiet, don't forget the water lol
kate
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Yes it's pretty amazing to consider that one pill a day that really has minimal side effects will probaly cure this hideous disease that many of us have had since the early seventies. I'm on my 3rd week on Harvoni and going to take my blood work next week. I was fortunate in the fact I was never treated before and had to go the through peg/inter treatment. After 2 1/2 wks. I can already tell there is something going on inside and hope it's the Harvoni stopping the replication of the virus. For those of us who stayed around we are truly blessed to have these new options. Good luck!!!
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It's a new day! I feel good. Eases my mind that you're all in the same boat with me, i dont feel alone. ::hugs for all:: thank you karen & motor. Still a bit itchy but not as bad as last night. Other then that I can't wait till 2:45 to take another dose! Love you all!
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I'm so glad the itching has subsided!!!
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Hi troops, just a note to say, I have a better mental state now that I'm treating, it's almost a lighthearted approach and I feel a little better physically as I'm still working everyday, I noticed that some of the effects of the Harvoni are hard to describe, after dealing with chronic pain for so long it's a better feeling and the fatigue has started to diminish some and I have more energy, at f4, I'm eating often and changing old eating habits and starting new more healthy ones.
I think the promise of clearing the virus in 12 weeks is something I thought I may never see, now I can see it and I can believe it too,
Do any of you take xifaxan & lactiluose while taking the Harvoni ?
I am waiting to hear back from the dr. If I should take both.
Also let us know how your doing and pass along any info concerning the side effects you notice...
Bubba, day 3...
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@BubbaT, sorry I'm late with this, but I just remembered from VA orientation class with pharmacologist. Are the drugs you're asking about for indigestion?
There were 6 of us in the class and he had reviewed our meds for interaction with Harvoni he was giving us He told 2 guys to stop their prescription and substitute Pepto Bismol-sp?. I didn't pay close attention to discussion, but it was about indigestion. He told another he could still take his pain pills that they had him on. This guy asked further about THC and doctor said off the record, not a problem, but official response is it's illegal.
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Hey everybody. Just wanted to let you all know that I feel great. I don't know if it's a mental thing, like knowing I have the medicine in my body so that's making me feel so alive. Or if it is actually working and ridding of the virus this fast. It's so crazy. Words can't even come close to describe. All winter while taking my daughter sled riding I'd only be able to go down the hill a couple times cause I couldn't make the trips back up. Last night we were there almost 2 hours sledding non stop! :) I have been waking up a hour or more then usual and feel so refreshed and awake soon as my feet git the floor. Do any of you guys feel as good as I do? It's so strange I took I believe my 4th dose today.. hoping this feels lasts my life time. Love you all! Xoxox
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Same here- I'm on day seven or pill 7 and shoveled snow for hours and hours and cars and dog paths and did it all again and salted.
I semi joked to my wife that it's the Harvoni and I'm cured already!!
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Good for you beflat! and everyone else that's feeling great!
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Amen to that, I'm surprised by euphoric feelings and noticeably higher energy.
I was expecting a battle to stay on my exercise routine I have built up battling HepC, but it's a non-issue. I told my buds I'm on drugs and there's side effects, I'm subject to break out in song and dance at any time.
Happy to see others are having these feelings.
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Yes, yall, similar results here too, pardon the yall, I'm from Dixieland ! Lol
Last week I worked well and didn't have the mental funk and the heavy legs from the edema, so I'm praising the Lord along the way, I'm glad to have some recourse for the battle over 20 yrs until now, so I'm reading and learning all I can how to help myself with diet and less stress, I've learned to trust, it's a lesson we all must learn.
Much learning can make thee mad, and then I come back to the foundation I've had all my life, that's if my numbers called I know where I'm going, so I feel really Good about that! When I die I want to go to heaven!
How bout u?
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@BubbaT, How's the song go? "everbody wanna go to heaven, but nobody wanna go now".
Be a slave to your liver, eat liver foods and get physical, it really raises your quality of life.
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Hey motor, what is your daily diet consist of?
And how much exercise are you able to do, what kind?
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Where's the like button? Like like like..like... ;D I'm happy to hear everyone is feeling great!
I slept well last night for the first time in who knows how long. I feel more energy in the afternoon, too!
It is day 7.
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Yes- working. Sleeping. Everything's smooth sailing so far. Kind of mind blowing for me.
Is this amazing ? wow! Pill # 9.
One problem- daylight saving time- but that has nothing to do with Harvoni.
Good to hear other people eradicating this virus and positive about it- side effects or no side effects. Not good to hear about the side effects, as I am experiencing none- so far.
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@BubbaT, Oddly, by the time they finally diagnosed me with hepC, I had quit drinking(was already down to hardly any),dropped 10% off my weight, and into a exercise routine that had me feeling better than I had in years. I couldn't imagine feeling any better, but first 2days of Harvoni raised the bar!
My low point was when I was diagnosed with fatty liver in January, 2014. I was told to continue alcohol abstinence, eat healthy and exercise more. With Google search I started figuring things out.
I try to stay away from any foods that overwork the liver and eat mainly the foods that nourish the liver.
Some of the bads are:sugar and salt, processed foods, white bread, white potato, processed meats, ice cream, red meat, any soups<all heavy salted, etc
I found a list of liver foods: garlic, grapefruit(have read taboo for some meds), beets & carrots, green tea, leafy green vegetables, avacado, apple, olive oil, whole grains-brown rice, cruciferous veg-brocoli, cauliflower, cabbage, lemon-lime, nuts-wanut,almond,pecan, popcorn<plain,no butter,salt, horseradish, turmeric,
I had read that coffee slows down the advances of hepC and my GI doctor at my last appt said have three cups a day. Guess he read same report.
My exercise deal that I built up to over 5mos starts with floor work- stretches for my lower back and crunches; then a routine for shoulders and arms with 3# and 12# dumbbells; 2mi bike ride; 1.25mi run. The entire deal gets me the 30min total workout. It really gets the healing juices flowing. Any you can do will help.
I eat a Jethro bowl of oatmeal/hot water every morning and 1.5oz blueberries. Then, I eat a small apple and alternate a handful(25 or so) of raw almonds or walnuts. I snack on raw cauliflower and carrots and cabbage(steamed supposedly healthier) and include a granola bar. For late lunch I'll either make a salmon salad<lettuce, onions, carrots, tomato, garlic clove, horseradish, turmeric, 7oz can salmon or a tuna salad or baked sweet potato(plain) with steamed brocoli(plain)or frozen artichoke hearts or frozen green beans. Anther option are beans,especially pintos. I finish the day with a few cheese and crackers, yogurt, and full cup of plain hot air popped popcorn. I forgot fruits, snacking on grapes, strawberries whatever's in season.
Anytime eating out, I try to get some guacamole in me, avocado's a power food<good fat. Wish my town were big enough for Whole foods or Chipolte Mex Grill.
Anyway, sorry to make this so long, but you can do better. Google nutrition, balanced meals, try to feed outta the produce section of the market.
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Hi Bubba
Did you hear back from your doctor?
As you are taking Lactulose I am guessing you have hepatic encephalopathy from cirrhosis and you may be a Child Pugh score B beginning to decompensate. If that is correct I am also guessing you must continue these meds to avoid having an episode of HE.
I don't see anything in the prescribing information sheet for Harvoni about your HE meds so I doubt they are a problem. I am assuming you are under the care of a hepatologist associated with a liver transplant center to closely monitor you while on treatment. I also have cirrhosis but am a Child score A as I do not have HE yet just edema that I take Spironolactone diuretic for and also had esophageal varicies that required banding back in 2012
Good luck on treatment
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Hi everyone, day 7 of Harvoni, today was tuff, pain in the left side abdominal, got chills bad after I came home from work today, I'm in my thermal gear, got the heat on 72, I hate freezing chills! Did yall get the chills and shake your butt off!
@ motor, you are really doing well, keep up the good work.
@lynn, yes, he said to take it with the Harvoni
Lynn, did u know that xifaxan is similar to rifampin ?
The Harvoni guide tells you not to take this while on Harvoni.
Lynn, I'm seeing a Gi present, thinking about changing to hepatoligst or infectious specialist, is there a guide for houston! Recommendation!
Thank you to my warrior friends, you guys are my favs!
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Hi
No did not know xifaxan is similar to rifampin just another reason we should ask our doctors especially with strong prescription meds. Isn't Xifaxan the antibiotic commonly given with Lactulose to help out with HE
Ok just did a quick google search seems Xifaxan is the trade name for rifampin it is not just similar they are the same
In the United States, Salix Pharmaceuticals holds a US Patent for rifaximin and markets the drug under the name Xifaxan, available in tablets of 200 mg and 550 mg.[13][14]
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Lynn, I'm learning that the Dr. Does not know everything, I remember sitting in the meeting which 9 of us were being given the talk from gilead rep and told about the
MEDS we should not take with Harvoni, and Rifampin/Xifanan were HIGH on the list of meds NOT to take with Harvoni !
I started to read and look up the meds and learned that they are the same drug!
I called the dr to ask again? Should I take the Xifanan and the Harvoni together?
His nurse replied yes!
Why don't they Know this?
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Looks like DO NOT take Rifampin
From the Harvoni prescribing info sheet
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
5.1 Risk of Reduced Therapeutic Effect Due to P-gp Inducers
The concomitant use of HARVONI and P-gp inducers (e.g., rifampin, St. John’s wort) may significantly decrease ledipasvir and sofosbuvir plasma concentrations and may lead to a reduced therapeutic effect of HARVONI. Therefore, the use of HARVONI with P-gp inducers (e.g., rifampin or St. John’s wort) is not recommended [see Drug Interactions (7.2)].
See table 3 page 5
Antimycobacterials:
rifabutin rifampin rifapentin
Coadministration of HARVONI with rifabutin or rifapentine is expected to decrease the concentration of ledipasvir and sofosbuvir, leading to reduced therapeutic effect of HARVONI. Coadministration is not recommended.
Coadministration of HARVONI with rifampin, a P-gp inducer, is not recommended [see Warnings and Precautions (5.1)].
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Day 13 here. Wow. I feel lucky and semi a bit guilty that I'm not experiencing any side effects. I'm happy about it though.
Sorry to hear or other people struggling with discomfort. Getting Blood drawn at the 15 day mark. Liver doc should have results in 5-6 days.
I don't feel anything at all. Really no differences. No worse, no better, no side effects.
That's ok too.
Feel fortunate!
Getting another day.
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Congrats on starting. The anxiety resulting from not knowing what to expect and the apprehension of worrying about you progress are two of the worse side effects. Try to relax, ease into it, handle any real side effects as they arise (most that have side effects say it gets better with time; that's true for me after a rough first two weeks). All in all, this is an amazing drug with few ill effects and a very high cure rate. The odds are all in your favor.
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@Bubba----any chance you can change doctors? If your doctor and his nurse did not have a huge red flying in your face about the Rifampin, they really need to be fired. I'm sorry to be so blunt, but this medication is well known to be a big no-no with Harvoni...
I don't want to give you medical advice--but I'd check with someone asap about stopping the Rifampin---immediately.
You're still early in the treatment process so that you may be not be negatively impacted by having taken Rifampin thus far.
Good luck. Please keep us posted.
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@Bubba----any chance you can change doctors? If your doctor and his nurse did not have a huge red flying in your face about the Rifampin, they really need to be fired. I'm sorry to be so blunt, but this medication is well known to be a big no-no with Harvoni...
I don't want to give you medical advice--but I'd check with someone asap about stopping the Rifampin---immediately.
You're still early in the treatment process so that you may be not be negatively impacted by having taken Rifampin thus far.
Good luck. Please keep us posted.
Gilead simply instructs you to tell your doctor that you're taking Rifampin.
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My sense is that Gilead turfs to the doctor because they don't want the legal responsibility. They do provide the information in their paperwork though.
Any information, study that I've read and the materials I was given at my Harvoni review meeting with the nurse practioner have Rifampin and St. John's Wort highlighted as meds not to take. And cautions about acid-reducing agents.
That's why it's my opinion that any doctor and his staff prescribing Harvoni should know about Rifampin/St. John's Wort and acid-reducing agents...and if they don't know then they have no business prescribing and managing a patient on it...
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Yes Meg ,
Yes, I did get the red flag also, have you ever had a gut feeling about something and you decided to listen, I did, and I stopped taking the Xifanan 2days before I started Harvoni, as many of us know mental fog is a huge problem for some of us like myself and when reading the pamphlet that gilead gives with the meds I looked at the rifampin and I said is this the same as Ixfanan ? And later I googled the meds and they are the same, so I decided I would call the dr for clarification and his nurse team told me to take it, but , I did not take it and I'm so Happy I didn't !
Thank you for your concern, many times we assume the dr/team would not give us erroneous instructions concerning meds, but it happens more often than we realize, I hope you guys are reading the fine print on the meds.
Atomic, my dr prescribed the Xifanan 2 weeks before he gave me the Harvoni !
We had the meeting in his office/staff , with the gilead rep present!
Is there a disconnect somewhere?
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@bubba
Yes. I'm relieved to hear you took good care of yourself....I'd still look for another doc, though!
Best luck with your treatment, Bubba and keep us posted on how you're doing along with your labs...
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@Meg, and Lynn ,
Thanks for support, we need to try to help others and give them the benefit of our knowledge and experience, it's difficult enough being plagued with (will they cover my meds or not?) Let alone be worried about taking wrong instructions from medical professionals! Sheesh! Give me a break already !
On a more positive note I am feeling better today, thank you lord!
Hope everyone on the rx is doing well also,
After reading the story about the guy who did 6 treatments, I am amazed that he could go through it without giving up! What an inspiration !
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Does anyone know if I can take clindamycin hcl 300MG with the harvoni? I got a tooth pulled yesterday and don't want to take it until I know. The bioplus phone number is a non working #?..... and I left a message for the doc. Thanks.
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Check the prescribing information here provided
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf