Hepatitis Forums
Hepatitis C Main Forums => Considering Hepatitis C Treatment => Topic started by: D63 on January 26, 2017, 09:44:15 am
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Hi all, checking in and prepping for the 8 week tx of Harvoni. After much reading, I have to admit that I'm very nervous about how I will react. But it's like an experiment and I won't know until I try it. Right now, I am in the middle of a bad flu, 2nd time in 5 weeks, my partner and I are playing ping-pong with the damned thing and it won't let up. Has anyone out there started tx during a flu bout? If it's something I should be concerned about then maybe I should call and ask? Don't really want to take anything else with Harv initially like otc cough syrups.
On another note, I'm buying a new toothbrush and making a dilute bleach solution for it. I have advanced scripts for sides in case I need them. The system is different here about getting a prescription- you can't call the doctor here, you have to go to the office to make the appt. then return on the day yo have it to get prescriptions.
Wishing everyone a calm and peaceful day or evening wherever you are.
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Hi, D63.
I can't recall anyone on these forums starting tx during a flu bout. You wrote, "maybe I should call and ask?" Yes, if there's a medical professional (or Gilead) you can call, that sounds like the best idea to me.
Since you've done much reading, you know to drink plenty of fluids while on tx. A lot of us (myself included) didn't have to take anything for the very few, very mild sides we experienced. Best wishes for an easy treatment.
Gnatty
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Hi Gnatty, thanks for your thoughts on that. And I don't know why it didn't occur to me to call up Gilead? Thanks for your calming encouragement. I'm hip about the water. We do the Liter thing over here so I looked up how many Liters to a Gallon and so-on. Hope to stay lucid. Thanks sooo much again about the call.
D
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Check-in-
Well about having the flu and starting Harvoni? We called the GI, we have a number directly to his voicemail! No call back today. We called the Pharmacy and the nurse suggested the usual otc syrups after describing symptoms. They said if it doesn't get better by Monday, the day Harvoni begins, to go to the clinic and get checked. I called Gilead and couldn't help but laugh. They wanted to create a profile and - too much information. I just needed to ask a nurse if people take Harvoni with a flu, that's all. They wouldn't let me talk to a nurse. Maybe I'll be ok by Monday. Drinking tons of water and taking their advice.
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-nothing like a surreal experience to send your flu packing so you'll be ok by Monday!
If you can laugh about Gilead's "Savoir-faire," you've turned the corner ;)
Gnatty
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Oh Gnatty! It was like Fellini, I kept laughing at the poor girl, she was trying not to laugh. I said, oh, you probably can't laugh because there's someone there in your office listening and you don't want them to think you're trivializing patient care. "Is there anything else I can do for you? (fourth time)" Put THAT much effort in bringing down the cost? I lost a lot of phlegm on that call. Thanks for your optimism. ;) ;)
Genotype: 1A
Contracted tattoo
Dx in 1990
Fibroscan: 11/15/2016
Stage: F-0, 5.4 Kpa
Tx naive
Started Harvoni: 1/30/2017 - 8 weeks Tx
Starting VL: 3,044,516
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Hi D63, welcome to the forum! I was thinking if I felt sick & the meds arrived I would choose to wait a few days to start. You can start any time you want to! You the BOSS! I know it seems weird before you start to think of all the things that are out of your control but remember that most of us did really well on the meds. I had a 8 wk. tx too & aside from being tired a little at first..... There was lots of killing going on in my body! There was a few headaches but generally I was awesome during my treatment. It is therapeutic to report on the forum what's going on with you & the rest of us will chime in from time to time. Hope you feel better soon, rosie
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Thank you, Rosie. Of course, I agree with you about waiting. But the doctor and health system here already have appointments for labs programmed in the system and I already have the 1st bottle, unopened. You know, with a flu or, whatever it is, and however I react to "Harvey," too many cooks in the kitchen spoils the dish, if you will.
If I feel worse by Monday, I'll hurl the monkey wrench and get checked first. You're right, it's my body, I'm the BOSS ;)
Meantime, got low-sodium Pedialyte, rest, water, water, water, otc syrup, atarax and ginger broth. Wish they had wheatgrass readily available here. It's a new thing since last year. 4oz would straighten me out.
Thank you for your warm welcome, Rosie. :) :) :) I'll be checking in. Wish you a calm peaceful moment.
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Hi D63, the flu is ugly any time but just before your Harvoni experience it's a little much to handle. Every little thing that goes on during treatment will feel like Harvoni did it! I was so afraid of getting nauseous that I got a script for it & never needed it. Some people say they get lots of energy after a few weeks. Hope you will be in that class . I was laying heavy border stone in my garden & sod during the first week of treatment smiling that I could not believe it! Everyone has a great story to tell but some of us older folks who had it so many years without a cure on the horizon just cannot believe we are cured. Grateful you got your bottle!
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Hi all! Is there a general time that the majority of Harvoni w/o RBV & INF patients take their does? Or is that something that you adjust according to how it affects you?
My GI recommended the morning. How early? I have my alarm set @ 8am.
If everyone is different then that makes us the same. I'll consider any suggestions.
Tomorrow is the big day. I think this flu is diminishing. Maybe a little COPD too. I quit smoking 6 months ago and the upside was that what I didn't eliminate from my lungs a few months after is mostly out of me now. A sweet huff off an Albuterol inhaler would be nice though. A little hypoxia yesterday but better today.
Wishing you a nice Sunday.
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Here's the info I have on timing! YOU THE BOSS! Lots of people take in the morning. It's a good way not to forget as brain fog may be coming... I chose to take at noon because I would get a little tired for just a few hours & then perk up for the day. I would do all the " have toos" & then noon was my dose time ..I would lay around a little then back to work again. I have read that also some like taking at night so they don't have to experience any side while asleep. So there you have it.. I also wrote a short paragraph or two about how I felt everyday & what time I took the Harvoni . I wanted to look back later & see the day I started really feeling super good again. That was at the 2 week mark for me! Glad you are feeling better & congrats on kicking smoking. rosie
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You really do get to choose, and if you should get any side effects that make you wish you had chosen a different time, it is possible to adjust the time gradually each day. I chose 6 a.m. because I'm an early riser and it was the only time I could be consistent, given my crazy schedule. (The nurse practitioner supervising my treatment stressed that I had to store the pills in the original bottle, and I didn't want to be carrying around all those orange jewels.) Harvoni gave me extra energy, so that worked out well for me.
I kept a log: besides marking when I took each pill, I listed each cup of fluid and any abnormal aches and sensations in case they became noticeable side effects. If I hadn't kept a log, I know there would have been times when I wondered whether I had or hadn't taken that day's pill, and I would have had to count all the pills remaining in the bottle to be sure.
Glad the flu is diminishing. You sound very ready. Best wishes,
Gnatty
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Thank you, Gnatty. I'm really anxious right now. I will be keeping a log too. And I'm hoping that it doesn't amplify my anxiety any more than my mind does. I have a system to mark how many liters of water I consume and an alarm for morning set to wake and take. I'm a coffee drinker habitually, but tomorrow, I think I'll skip the coffee until I get a bearing. Thanks again
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I took mine (Harvoni) at 9 p.m. with dinner.
It worked out fine - but I wish I'd taken it in the morning with food.
... That way I would have been able to enjoy the 'Harvoni High' more (a sort-of surge of energy, many people get).
There's no need to feel too anxious.
Most people have few, if any side-effects - and the sides they do get are generally mild.
Also - I just let myself drink however-much water I felt like drinking.
Your body will tell you what's right.
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had my first visit to doctor for hep c. had to give a ton of blood, but doctor was very positive about my situation. after blood work results I will know if and when I will start my treatment. good luck to all.
mikeo
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mikeo, glad the doctor visit went well. Feel free to start your own thread.
D63, you're in your second week now, yes? How's it going? -hope you didn't get any caffeine-withdrawal headaches -- someone who started a new thread seems to have had that problem. Coffee is actually supposed to be good for the liver:
https://forums.hepmag.com/index.php?topic=2811.msg22293#msg22293
Gnatty