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Hep C Discussion Forum -> On Treatment -> Harvoni or Bust! Quitting after 2 weeks?!
Post Info TOPIC: Harvoni or Bust! Quitting after 2 weeks?!
Tig


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RE: Harvoni or Bust! Quitting after 2 weeks?!
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I read back and realize that I failed to mention anything about missing those doses of Harvoni. That's not something you want to do. As Observer and Canuck said, by starting and stopping these antiviral medications, the virus can mutate and become resistant to the drugs. This is a wiley virus and you shouldn't stop Harvoni for any other reason than finishing, or stopping. The latter should be a decision made with your doctor and I hope one you don't have to make. Regardless, be sure and tell your doc about these issues at your earliest convenience.

The panic attacks are frightening and I hope you have had less trouble since restarting. Things should start settling down soon. With any luck, rght? Stay in touch...



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Observer


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Hello Meow,

I did different meds but I certainly sympathize with having a lot of scary seeming side effects. 

It's very important that you don't randomly stop the HepC medications..  It's very, very, very important to *not* give the virus an opportunity to mutate, by keeping a steady level of the meds attacking it. Please call you Dr/ nurse team and let them know What's going on and they will tell you how to proceed.

 

A



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Canuck


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Hi again Meow, 

Further to my prior post ...

Confirming the days (or periods) you have NOT had the Harvoni, would be helpful info for us.

Regardless, even if it was only 2 days, that you did not take Harvoni, you must immediately inform your doc of this and he has to decide what is best to do about this lapse. 

If I am understanding you correctly ... (between your 2 posts) - you started treatment 2 1/2 weeks ago, at about 2 weeks you stopped taking the Harvoni for 2 complete days?? (so ... that would be day 15 and day 16 that you did not take your harvoni pills?), and then ... you tried restarting your Harvoni on day 17?, but then stopped again?

I cannot figure out (for sure) from your description(s), exactly how your Harvoni consumption went, day by day, up to now - this needs to be confirmed.

Are you currently taking the Harvoni now (have you been taking it continuously since you "re-started" it on day 17)? Or, in other words, you have been taking the Harvoni continuously since day 1, except for day 15 and 16? And/or, since re-starting the  harvoni on day 17, you have now subsequently stopped taking the harvoni entirely?

The biggest problem at the moment are the days you HAVE NOT taken the Harvoni - this now HAS to be sorted with your doc.

I do believe had you flooded yourself with ample, sufficient water, some of the things you had been going through might have been not so noticeable, and with more "hands on" human support, advice, company, and different ideas to try (your docs, your husband, a good friend at your side, and us to help), you may well have been able to lessen/combat the panic attack as well and figured out good ways to get yourself through and beyond what has obviously been a very upsetting and unfortunate start for you. Your sides/reactions may well have leveled out (given more time and water, and sufficient specific supports) to be at a tolerable level, and, (as you progressed further along into treatment) you probably would have found the sides less and less noticeable or disturbing as time went on.

All of what you have been through is unfortunate, panic attacks are really horrible, but what has to be figured out NOW is what to do about the "days" your blood levels dropped below theraputic levels - this is not a good thing!

You must be advised on this from your physician, about how to proceed with treating your virus now, given that you had a (or some) cessation(s?) in the theraputic levels of your treatment drugs. Courses are designed to be a continuous treatment, with no stops or starts, with no drops in the blood drug levels, for very good reason.

People DO figure out how to handle sides and feelings, that is NOT insurmountable, it just has to be approached well, with all the good help you can get. You will get there!

But at the moment, your regime sounds like it is off-kilter, you have to let your doc know ASAP what harvoni you missed and when, and let him figure out what he needs to do about it. 

BTW - I looked and there seem to be no drug interactions listed between harvoni/your thyroid replacement drug or your metformin.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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Canuck


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Hi Meow,

Sorry for your troubles.

But please, if you will, can you clarify some things for us first? ... (I could be reading what you wrote wrong) - you said ... "So I did not take any of my medications for probably about two days ...". Do you mean you stopped the Harvoni, or was it the other drugs you take that you stopped?

Have you stopped taking the Harvoni, at any point? C.

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Hello Wounded Dragon,

Fear not! You're with friends and you can babble all day, we'll read it. Now if I can't find my glasses, that might slow me down! We encourage talk, as much as you care to share. We may not have all the answers, but we'll always listen...

The first couple of weeks (+\-) seems to be the period of time many people complain of some side effects from most of these new treatments. Fatigue and headaches are most common. It's something you should discuss with your doctor about if you continue with these reactions. If you are taking any other medications, supplements, antacids, be sure your doctor knows everything. Some stuff you haven't even considered can affect your metabolism. You can contact the pharmacy that supplied the medication and ask them to take a look at everything you're taking. That's something I did a few times during treatment. 

Wendy mentioned your water intake. That is absolutely vital. 9 times out of 10, if hydration is inadequate, people start feeling poorly on these new drugs and quickly. 3-4 liters or 1 gallon, whichever you prefer, of water. You really should be walking around with water in your hand all day. Get a refillable bottle and force fluids. Water is your best friend! 

Let me close by telling you (kindly) to give Dr. Google a pass for awhile. When you get in a panic, googling symptoms always seems to be productive. Overly so most of the time!  It's best to check in with us and we will help you find the truth. Now get busy and start hitting that water!!!

           



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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wendyo


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How much water are you drinking while taking the Harvoni Fran? Most folks that end up not feeling well is due to improper hydration. Once you answer that question, many folks can / will chime in.



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Meow76


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 Hello, I posted an introduction over in the other part of this group so I will keep the introduction part  short and to the point.

 

 My name is Fran, I am 40 years old, I just started treatment a little over two weeks ago. Harvoni.

Have been diagnosed since I was 22 years old. Type 1A. Have never done any treatments before this. Relatively low viral load, a little to no scarring, etc. all in all the stats look pretty damn good for somebody who has had this for 20 years or almost 20.  I don't drink, smoke, etc. etc. 

 

basically I started the treatment because I want to cure myself and get on with life. I don't want to have to worry about what's going to happen down the road if I still have this in my liver/system. 12 weeks should've been a cakewalk.  My brother-in-law has type 2B  he took a pill that was just approved and released this past summer. His side effects seem to be little to none. He is still clear three months post treatment. 

 

 Anyways for the first week or so I had little baby side effects nothing to really cry about. But add about the two week mark is when I started feeling really really really bad. Like nausea, tired, a lot of stomach upset, and believe it or not I had my first full blown physical panic attack in a very long time. And it was so bad I called my husband at work crying thinking that I was dying.  Then I accused (  in my mind/to my husband ) the Uber eats driver of trying to drug my falafel and hummus. Needless to say a relaxing night watching The Walking Dead was out of the question at that point. 

 

So I did not take any of my medications for probably about two days. I am also hypothyroid on armor and I have type two diabetes on MetFormin. 

 

On day two or day three post panic attack I started introducing my medicines back in again to see if one of those is what caused my physical and mental freak out. I took the harvoni ny at night because of how tired it makes me. I figured I would just sleep through it.

 

 I woke up the next day so exhausted I could barely get out of bed, my stomach was all kinds of messed up, started feeling just really crappy physically. 

Why did I do the worst thing possible?  Because I am a glutton for punishment. I started googling. So of course my googles ended me up in the "dark web of worst-case scenario's" basically reading that this drug is going to kill me, make me go blind, give me liver cancer, make my heart explode, etc. etc. people are like this is a new drug so we don't know what it really does in the long term. So of course this just played right into my natural anxiety and I said to hell with this. That was two days ago.

 

But I invested two weeks into the medication. I feel that I would be  an absolute stupid ass fool to give up. I mean there are people who really want this treatment and cannot get it so why would I spit in it's  face? 

 

 I know that there are risks and side effects with anything. Even my diabetes medication. Even herbs and vitamins. 

 

 I guess I'm just looking for support for a sympathetic ear, for somebody who has been through this treatment and had side effects but kept plugging on, friends, companions, etc. 

 

 I feel like it's such an isolating disease and treatment. Because nine times OK seven times out of 10 most people got into this predicament because they were doing drugs or other risky behaviors other people from blood transfusions or were infected innocently or piercings or tattoos or accidents .

 

 But what most people tend to cling to is drug addiction. And I am proud to say that I have over 11 years clean as we speak. I'm very proud of myself and my progress. 

 

 Sorry this is so long I'm usually not this babbling. But I'm just so full of anxiety and fright and I just don't know what to do with myself 

 

thank you for sticking in there with me and reading this untill the very end. I feel like I should send you a gift card or something lol



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