Hep C Discussion Forum

gabbiegal · Member

RE: New member and about to start Harvoni

gabbiegal · Member

JimmyK wrote:
Greetings,
Get ready for a stunning outcome. My bet is they are going to confirm you are UND. If you are, you will remain UND throughout treatment. That is just the way Harvoni rolls.
I am making an assumption now that you are treated in San Antonio?

All our best!
JimmyK

Yes JimmyK-San Antonio

JimmyK · Guru

Greetings,

Get ready for a stunning outcome. My bet is they are going to confirm you are UND. If you are, you will remain UND throughout treatment. That is just the way Harvoni rolls.

I am making an assumption now that you are treated in San Antonio?

All our best!

JimmyK

Canuck · Guru

Hi Gabbie,

Glad to hear you are off to the doc to find out your first VL, and to pick up your second bottle! Progress! At least it may feel more like progress when you get the feedback about your labs.

Please, as Tig suggested pick up hard copies of your labs when you are there, and/or find out how you can always retreive them on-line, any bloods or tests you have done, and keep them for your own files at home.

3 hours there and 3 hours back eh? Me too, I had to travel a long way to see my doc and due to the trial I was in, it was conditional I had to have the blood work done by them and the lab of their choosing (same bldg. and floor though). Winter conditions or road delays/rock slides, we could be on the road for 5++ hours (one way), if roads were good maybe 4 or 4 1/4 hours, so, we almost always booked a motel for these doc visits and overnighted it in the big city. I had more appointments and draws than most folk do, only because of the trial. Travelling so far and frequently was hard, but I welcomed it for the feedback from that doc and the continuity for labs and care. Maybe you too could stay over, if there was any other benefit in doing so.

Do you know how many more bloods draws and doc appointments you will be getting, and know those dates yet?

You had one visit with the doc (right when you were starting??) so at that appointment, did you end up getting any aswers about:

- whether you have "chronic" hep b or are a "resolved" b?.

- did you get any of your pre-treatment lab results back ?

It would be good for you to have comparables - before, during and after labs - as you go along. I highly suspect (just like many others do on these new DAA's) you will see marked drops in your VL, and ALT/AST's this test.

You mentioned early cirrhosis - what Fscore are you? - by fibroscan(s)? And did you have ultrasounds?

Sorry your appetite is off - eggs are OK, but ya, you can kinda get sick of eating eggs all the time pretty quick - hope your hubby cooks? If your stomache is off a bit, i am hoping that will wear off and improve during your second bottle - some people do find they end up loosing some of the unwanted feelings they have the first few weeks, as their course of treatment progresses.

One of your concerns, before you started, were migraines - you haven't had any of those? - just "regular" headaches? - so that's good (sorta), I trust you are keeping your water intake up, it WILL help with bagged, blah feelings, soreness and headaches. Electrolytes - like Tig said, especially if you not eating as well as you should be.

Sorry you had some glum, crying jags. None of this is easy is it. We get it. If I was depressed on treatment I would not have been able to tell, as I was so fagged, exhausted and sleeping more than an old cat on it's ninth life deathbed, I couldn't take objective concious notes on it - prior to treatment I was so pre-occupied being full-out wired racing around fear trying to get to treatment, that alone and the exhaustion it created would have distracted me from knowing if I was depressed. I did manage to have one major melt-down prior to succeeding in getting into my trial though. Hit the wall and my limit, and cracked (big ole ugly face cryin' too), and of course it had to be witnessed by whom you never want to have witness these things. Sigh.

I think things are going to start going better, maybe a bit easier for you after this doc visit, with some good news under your belt, and your potent back-up buddies (fresh re-enforcements) in that second bottle, you are going to get a second wind.

Believe us, you are killin' it as we speak! biggrin C.

Tig · Admin

Hey Gabbie,

It will... We have been witnessing incredibly fast reductions in both the viral load and the liver enzymes, AST and ALT. You're going to be thrilled and amazed at the results thus far. Be sure and ask for copies of all your lab results and file them away for future use if needed. Some of these labs and doctors offices destroy their records after a number of years. I failed to keep them years ago and regretted it. Write down any questions you might have before you go in. If we can help you, let us know and be sure you let us know just as soon as the good news rolls in! smile

gabbiegal · Member

ok my support team, I had my first blood test since starting the Harvoni on Monday and tomorrow I travel to the Liver Institute for my results and my 2nd bottle of meds. Fingers crossed that the viral load is at least less!!!!

Tig · Admin

Hi Gabbie,

Pill phobia's aren't uncommon, so don't feel like you're alone. There are varying degrees of it, too. Big pills are usually the hardest to get down and bring concerns for everyone. It sounds like you're approaching this the best you can and you know what, you're accomplishing what you need to do and that's what counts. Maybe this routine will help you with your phobia in the future. In the meantime, continue to move forward and do what you're doing, it's working!

The issues with fatigue, muscle aches and nausea aren't uncommon. The first few weeks take some adjustment and I think things will calm down after that. There are some things you can take for the nausea if it gets severe. If you want to try some ginger ale, we have a good homemade recipe in our nutrition section. It has helped a lot of people here with treatmeent nausea. There are some good, healthy ideas and recipes for smoothies there, too. Sometimes it's easier to drink a nutritious meal than chew your way through one when you're nauseous.

Be sure you're drinking enough fluids! That's very important. Not meeting that requirement will cause increased muscle aches, headaches and fatigue. So be sure you stay on top of that. 3-4 liters of water daily! Add some electrolytes, like Gatorade or similar. Coconut water, cranberry juice, etc. added to your intake will help, too. Switch things up, but keep at it, you want to avoid dehydration.

wendyo · Guru

I have a hard time swallowing pills and I have to put them in the back of my throat, kinda drop em. Remember just for today.

Ginger really helps with nausea. I do take a ginger capsule but I also drink ginger tea every day. And there is good ole ginger ale as well. Try to keep up your food intake as you need to have energy. Smoothies, protein shakes, etc. Whatever you can do Gabbie.

gabbiegal · Member

I'm still doing fine with the morning pill swallow. I know it's impossible for some to "get" the significance of a pill phobia but it's quite real and each morning I'm so relieved to have it over with for the day. Trying not to dwell on the quantity of days I have yet to go....

Issue I'm having is total lack of appetite. I'm been sufficing on a scrambled egg twice a day. That's it and I'm ok with that but surely am not getting the nutrients I need. Having a bit of nausea but nothing really worrisome.

Of course having fatigue and muscle aches but it's tolerable. For some reason I just went through and am pulling out of a deep depression. The crying jags come and go.

thanks friends

Tig · Admin

GO GABS!!!

Congratulations on Day #1! Can you feel it? That rumble is your Dragon packing it's bags and getting ready to vacate the premises...

It's official, you're now a member of the

wendyo · Guru

A great day to start; Independence Day

Canuck · Guru

I'll second that! YAY! (as Obs said). Day one, down the hatch, you're on your way!.

You are going to become a pro at pill-swallowing 101 in no time at all, you just proven it!

How did your doc visit go? Did you get all your questions answered, and your lab logistics figured?

How many doc office vists, and how many lab draws did he tell you you need during this 12 weeks?

That was nice of your partner, not everyone can understand how unnerving things can be.

I'm betting you will not be waking every hour on the hour tonight! You just took one of the very best bravery pills ever made, I call them big bro or best back-up-buddy-in-a-bottle ever. Yer gonna kill it dear. wink C.

Observer · Guru

Yay, Gabbie

Congratulations on your first day of dragon slaying. 1 down

I hope your intake of keeps any side effects away.

A

gabbiegal · Member

today was first day of my treatment. I had woken every hour on the hour throughout the night in anticipation of and anxiety of the "pill swallow" !!! At 6:30 am I sat up on the side of the bed, took my regular morning meds and then it was TIME........my husband understands my pill phobia and he sat next to me for support......I took a deep breath, said a quick prayer and ~gulp~ it went down biggrin . Such a sense of relief......I'm on my way. I made sure to drink down plenty of water throughout the day. My alarm is set for 6:30 each morning.......I have a ways to go and plenty more pills to swallow and lots of prayers to be said but I'm on my journey.

So many thanks to you guys here for your support.

Shadowfax · Guru

Welcome Gabbie,

You certainly have come to the right place. Your story is so much like mine. I had Heb B as well and was really afraid of taking a larger pill as I had problems with it. When it came to this one, I just took a large gulp of water first, placed it well at the back of my tongue and then the next gulp and down it went. There are other suggestions here that you might also try but I suppose knowing how important it was just helped me through it.

My Hep B was monitored closely every four weeks through my Harvoni TX to ensure it did not reactivate. It did not nor did some others here who also were co-infected. Lets hope yours does not either and it problem is resolved. Water, yes, you know about that and it should resolve any or all side effects you may get and honestly, most got next to nothing and water did the trick.

Welcome to the start of your cure. Once again, so glad you found us.

SF

gabbiegal · Member

I'll confirm with the doc but I seem to recall him saying I had had Hep B at some point but it had cleared my system. I'll for sure try to keep track of my ALT/AST levels.

I typically take a BC Powder for my migraines and never take any Antacids. I've provided a complete list of my meds to the doctor but honestly forgot to tell them about the BC Powder so I shall do that also.

Thanks so much for the Yogurt tip and again a huge thank you guys for alerting me to properly hydrate.

You guys are so awesome and going forward it is such a relief knowing you're here for support and hopefully I can one day be a support to others facing this

Tig · Admin

Welcome to the forum, Gabbie! You have received a lot of good information, so allow me to extend any help I can as you progress through treatment. Be sure and use our search function, we have a lot of information and personal experience with everything HCV.

I think the most valued part of our forum is the people. You'll never find a more caring bunch. If you have any questions, don't hesitate to ask!

Remember: Water and adequate hydration IS key! Harvoni causes headaches secondary to dehydration, it does not trigger migraines.

Harvoni

JimmyK · Guru

As it relates to taking "large Pills".

We have had others here with the same concerns and have come up with many unique ways of dealing with that.

One way I would think helpful is something like Yogurt. Taking the pill with yogurt helps grease the skids so to speak. ;)

One other topic that I want to make sure you are aware of.

Antacids. Do you take any? Do you for instance take Omeprozol? These interact with Harvoni and I just want to make sure you have as much information as possible to make this a smooth and successful treatment plan.

http://www.catie.ca/en/fact-sheets/hepatitis/harvoni-ledipasvir-sofosbuvir

When you get the time please review the above link. Lot's of good information and if you have questions, someone here generally has the answers. We don't do Medical advice, but we know how to steer a good conversation with your Doctor.

JimmyK

Canuck · Guru

Hi gabbie,

Welcome here. Glad to meet you and glad you are about to start with your harvoni.

I see you have covered a lot of the basics here already, hydration, trying to set yourself up in the best ways logistically, and pill swallowing. I am sure, come hell or high water, you will succeed in all these fronts.

You mention 2 other concerns - migraine hx and fear of B resurgence/activation or re-activation - when you see your hep doc next week (Tues?) ask (in advance) about what analgesic you may take for a migraine, should you happen to get a migraine while on treatment. Ask anyway, about ANY scripts/meds or supplements you may be thinking you might possibly have a need to take while on hep c treatment. I don't know what in particular triggers migraines in you, but just stress alone (or other items/factors) could hold more trigger potential than harvoni ever could.

Regarding hep B - ask your hep doc if he has tested you for B surface antigen, (this is an important basic test they routinely do, and probably have already done on you, they do this prior to initiating hepc treatment), it helps determine, if you do (or do not) have "chronic hep B". Have a good chat with your hep doc about your "current" hep B status, find out whether you have just (merely) had hep B in the past (and you just spontaneously resolved it on your own), or, if you are indeed currently a "chronic carrier" of hep B. If you are a chronic carrier of hep B, then this would have been verified by a further positive hep B DNA test, which would have revealed the hep B "load" you carry, and your doc would have to make a decision about treatment for hep B. On the other hand, if your hep B surface antigen was negative, then he would have just likely verified your current immunity levels to hep B and A. (Re-activation of B has been found to be a really rare occurence in the hundreds of thousands of people who have been successfully treated for hep c). Reassure yourself, by having this discussion with your doc, and finding out whether he considers you "chronic B" , or not. These hep docs do have these things down pat now, they watch us carefully, and they will not allow you to be put in harms way.

Do you happen to know what some of your current ALT/AST's are?

Fire away for questions, or, if you just want to compare notes. Glad you will be starting soon and will soon be freed from this virus.. biggrin C.

gabbiegal · Member

Christine, thanks so much for responding. OverAll I feel quite well. Never have been symptomatic. I would like to think my doctor could set up for my bloodwork to be drawn in my city as they had me go for blood test once already here when my insurance company was requesting it. There is a Qwest lab here they had me go to. Seems like a 3 hour drive for blood to be drawn is kind of ridiculous. The specialty Pharmacy my insurance insisted I use also insisted in sending the meds directly to me, against the wishes of my doctor. They should arrive here on Tuesday. I then have to call scheduling in San Antonio and set up an appt. Drive there, get blood drawn ,turn around and drive 3 hours back.

I'm prone to severe migraines and so hoping and praying the Harvoni won't bring them on. I now know to stay plenty hydrated. Thank you JimmyK!!! My silly yet biggest fear for now is my inability to swallow large pills. A very real fear for me all my life. But I know I must as my life depends on doing so.

My Hepatolgist's greatest concern is the Hep B rearing it's ugly head. So the bloodwork is of upmost importance to monitor that.

MyMallards · Member

Welcome Gabby!

Youre in the right place. I'm 8 weeks into treatment and the seasoned gurus have been so helpful with both solid information and anxiety relief. Ask anything and someone will show up with the answers. Guaranteed!

My pills were provided by a specialty pharmacy right next to my Hep C doctor's office so I just pick them up at monthly visits. Because I have to drive 45 minutes to the office I negotiated to get blood work done closer to home. Hopefully you can work something out.

How have you been feeling overall?

Christine

gabbiegal · Member

JimmyK wrote:
Mine were mailed direct from a specialty pharmacy. Personally I did not care how they chose to do it.
I am in Spring so I get the weather.
They hydration is imperative. Others will be along to add to their thoughts on water and treatment.
Regards
JimmyK

yea, I don't care how the meds are delivered either. I just didn't understand why my doctor wanted them delivered to his office. I know they want bloodwork drawn but was hoping to start the meds as soon as they arrive here Tuesday. Now I have to schedule an appt for the 3 hour drive to doctor. Then turn around and drive back home. Was hoping they could find a lab nearby for bloodwork. Just thinking aloud here.

JimmyK · Guru

Mine were mailed direct from a specialty pharmacy. Personally I did not care how they chose to do it.

I am in Spring so I get the weather. wink

They hydration is imperative. Others will be along to add to their thoughts on water and treatment.

Regards

JimmyK

gabbiegal · Member

thanks so much. Didn't know about the hydrating; most especially now though since our temps are running 105+ here in Texas.

Did you get your meds delivered to you or through your doctor's office? My doctor is 3 hours away.

JimmyK · Guru

Greetings,

I would not consider the place Grand Central Station but answers always come.

Side effects with Harvoni tend to be minor and well controlled with an adequate amount of Hydration. A Gallon a day will absolutely help. It is a good thing to add such things as raw coconut water 2/3rds mixed with 1/3 raw cranberry. Helps to maintain sodium levels and electrolytes.

The hydration cannot be stressed enough in particular where ones first concern is side effects.

Figure a way to get the pill down whole. DO NOT CUT or CRUSH.

All the best and you will do fine.

No worries.

JimmyK

gabbiegal · Member

do people post here often? I thought I would get a response by now. ~ shrugs~

gabbiegal · Member

Glad I found this site. I've no idea where to begin except well I think I may have had Hep C for over 30 years but was diagnosed 10 years ago. Seeing a Hepatologist at the Texas Liver Institute and set to begin Harvoni within next few days. Fortunately my insurance is covering 100% of the cost. I was also dx with having had Hep B at some point in my life so it's a possibility Hep B could flare up during treatment.

Could we begin with the most typical side effects I could expect? I suffer greatly from migraines and had heard a headache might be expected.

An issue I have that may appear silly is that I absolutely have problems swallowing large pills. Causes extreme anxiety and sometimes a complete inability to get the large pill down. At the co$t of these pills one cannot risk losing one single pill!!!

Edit to add: my insurance company was adamant about sending the meds directly to me. The Liver Institute was adamant the meds be delivered to them. I got tired of being in the cross fire and told them to mail package to me. How do others rec. their meds?

Thanks for anyone's input

Gabbie

-- Edited by gabbiegal on Thursday 22nd of June 2017 06:28:25 PM

-- Edited by gabbiegal on Thursday 22nd of June 2017 06:28:56 PM

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