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Author Topic: Anxious to get started  (Read 9709 times)

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Offline Morphin

  • Member
  • Posts: 10
  • Just another survivor
Anxious to get started
« on: June 16, 2015, 09:48:20 am »
Hi all,

As mentioned in another post - this place is fantastic!  Thanks everyone for sharing their story and experiences.

Long story short - waiting to receive call from insurance for pharmacy setup and begin receiving Harvoni.

I'm HIV/Hep C co-infected. Got it around 2001. Been undetected with the HIV since 2003, but the Hep C has always been a sore spot in my life.  Dr kept a close eye on me however, and recommended waiting for treatment til new drugs(always just around the corner) come out - then last Oct - the miracle happened.

Dr called Gastro for an appt, but for some reason, got lost in the shuffle, so this spring for annual 6 month checkup, Dr personally called and set me up.  I met with Gastro on May 23rd - and they said I'm good to start Harvoni. Viral load 1.2 mil+, signs of fibrosis from earlier tests, but most recent tests look clean.  Gastro recommended 12 weeks since treatment naive.

Week ago, received first letter from BCBS - DENIED!!!  I freaked and was so disappointed.  Called Dr to begin repeal and they mentioned also receiving the letter, but clarified that I was only denied for the 12 weeks and approved for 8 weeks (my letter didn't say that) - WHOO HOOO!!

Now, just playing the waiting game. Overall pretty healthy, but noticed this year being more fatigued and brain foggy - and discovered through this forum that it was a Hep C side effect. Figured it was just a bit of depression/getting older(48).

Anyhow, ready to battle this disease and add Hep C undetected to my arsenal.

Thanks again for all the informative posts and encouragement you bring to us lurkers!

Peace
Age 48
Infected 2001
GT 1a
VL 2.36m 
Tx naive
Started Harvoni 7/7/2015 (8 wks)
W4 - Undetected
W4 AST 33 (66 before TX)
W4 ALT 26 (41 before TX)

Offline sabre

  • Member
  • Posts: 77
Re: Anxious to get started
« Reply #1 on: June 16, 2015, 09:59:05 am »
It's amazing that they'd leave out that small, but crucial detail from the letter you received denying 12 weeks. Anyhow, congratulations on getting the 8 weeks. The protocol for your situation would be 8 weeks, so you should be good to go.

My insurance said they'd pay for 12 even though my protocol was 8. I took the extra 4 weeks as an insurance policy since they offered, but probably (hopefully) didn't need it.

Curious as to what kind of testing you had to determine your level of fibrosis.

Hope you don't have to wait too long for the script to come in.
Infected 1980 / Diagnosed 2008
GT 1 / Treatment naive / VL 190,000
Biopsy 2008: stage 0 grade 1
Fibroscan 2015: F2 mild fibrosis
Chronic kidney disease (due to HCV) / Proteinuria

12 weeks Harvoni began on 03/28/2015
End of treatment: 06/19/2015
Labs on 06/17/2015: Undetected
Labs on 09/21/2015: Undetected (SVR12)

Offline dearprudence

  • Member
  • Posts: 121
Re: Anxious to get started
« Reply #2 on: June 16, 2015, 10:40:12 am »
Good luck Morphin! Lots of people here rooting for you!  Prudence

Offline Trish1

  • Member
  • Posts: 19
Re: Anxious to get started
« Reply #3 on: June 16, 2015, 12:50:50 pm »
Hi Morphin!  I am anxious to get started too!  My insurance company approved me for 8 week tx, sent me the medication - it is in my cabinet - only I could not get in to see the dr until 6-23-15 - next Tuesday! and they said I can't start taking until after I see the dr.   I just want to get going on this!  Sounds like we might be doing the treatment simultaneously!!  Good luck!
Age 51
Infected 1983
GT 1a
VL 5.1m 
Bx 2004 - Grd 1 Stg 1 
Tx naive
Metavir Score 5/26/15 - F0-F1
Started Harvoni 6/23/2015 (8 wks)
4wk (during tx) - detected <15
8 wk EOT - undetected
4 wk after tx - undetected - SVR4
12 wk after tx - undetected - SVR12

Offline trixiedaisy

  • Member
  • Posts: 8
Re: Anxious to get started
« Reply #4 on: June 16, 2015, 01:26:53 pm »
I to am anxious/nervous to get started. I have the Harvoni med and it is also in my cabinet. I also suffer from anxiety and depression. Have been in hospitals for it. I take so many meds for depression and anxiety and just started 2 more meds for depression and anxiety and have started with taking one med at a time so if I have side effects I will know which med it would come from. I have kind of put the Harvoni on the back burner to try and get this anxiety under control. My depression is not to bad at all right now so that is good. But my Hep C doctor said the Harvoni could (maybe not) cause some depression and wants my psych doctor to clear me. My psych dr. has cleared me but I am so scared to start it!! I really don't want to get depressed again and possibly have to go back to the hospital. I am going to start the 2nd. med my psych dr. prescribed tomarrow and wait about a week or so and make sure there's no side effects from it. Then hopefully in a week or two I will start Harvoni. What has put a scare into me about taking the Harvoni is that a week after I start it I have to have blood work done. So my thinking is it must be a strong med. Who has blood work done after taking a new med for 1 week?? I guess I just need to hang out here and get reassured it will be ok. I know I am a 58 year old baby lol. I am new here and thank all of you for being here!!! 

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Anxious to get started
« Reply #5 on: June 16, 2015, 03:26:01 pm »
Hi trixiedaisy, Don't overthink the possible side effects too much before starting treatment, or your anxiety may create or worsen problems that might not otherwise be an issue. Also, everyone's body is different. Some people have trouble with sides, while others have virtually no side effects. And different people have completely opposite side effects. Harvoni may lead to anxiety and even depression in some people, but other people (me, for example) get quite elevated and giddy almost - in a very positive way. I was getting a huge amount of work done each day and feeling on top of the world (until a week ago when the anemia caused by the ribavirin I am also taking started to kick in - but that's an issue you won't have to deal with if you are just on Harvoni alone).

And yes, these new drugs work incredibly fast. Most of the work is accomplished in the first 7-10 days. I have had Hep C for more than 40 years. My viral load at start of treatment was 4 million. After just 7 days it was 130! After another 7 days it was < 15 but still detected. And by end of Week 4 it was undetectable. That is a typical progression for people on Harvoni.

So take the plunge and try to replace your anxiety with eagerness to get cured - because that will likely be your outcome.

best to you,
kim :)
« Last Edit: June 16, 2015, 03:27:32 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Anxious to get started
« Reply #6 on: June 16, 2015, 07:04:13 pm »
Trixiedaisy - run your own race, ride your own ride. It's a different journey for everyone. Don't be put off by the side effects of others. Often our side effects posts are a snapshot in time - come back a few weeks later and they might have changed for people.

Regualr blood tests are a sign that the doctors are checking you and looking after you. I had blaseline bloods done, then fortnightly, now I'm monthly as I'm over half way through a 24 week treatment program.

Don't forget HCV can cause depression too - some of your depression may be related to living with the virus for so long. In which case, you'd want to get rid of it, I'd reckon.

Good luck with treatment.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline trixiedaisy

  • Member
  • Posts: 8
Re: Anxious to get started
« Reply #7 on: June 16, 2015, 10:44:58 pm »
KimInTheForest ..... Thank you so much for all the positives! I especially liked that you said you got elevated ect... Very very encouraging and that's what I needed. I just feel like things are so complicated lately especially that my psych dr put me on 2 new meds this week for anxiety/nervousness so now like I said I have to wait and see if and when I will have side effects from either. I am the type that if there are side effects I will get them. It sucks! I have been put on so many drugs in my life and had so many side effects some very serious to where I had to be hospitalized. I will just keep in my mind that when I start the Harvoni soon I hope that all will go well. I try so hard to stay positive but I am now just plain out scared everytime I have to take any kind of new med. I am sure I will be ok and thanks again for your positiveness and feedback!!!

Offline trixiedaisy

  • Member
  • Posts: 8
Re: Anxious to get started
« Reply #8 on: June 16, 2015, 10:46:27 pm »
Trixiedaisy - run your own race, ride your own ride. It's a different journey for everyone. Don't be put off by the side effects of others. Often our side effects posts are a snapshot in time - come back a few weeks later and they might have changed for people.

Regualr blood tests are a sign that the doctors are checking you and looking after you. I had blaseline bloods done, then fortnightly, now I'm monthly as I'm over half way through a 24 week treatment program.

Don't forget HCV can cause depression too - some of your depression may be related to living with the virus for so long. In which case, you'd want to get rid of it, I'd reckon.

Good luck with treatment.

Offline trixiedaisy

  • Member
  • Posts: 8
Re: Anxious to get started
« Reply #9 on: June 16, 2015, 10:53:58 pm »
Philadelphia.... thank you also! I know I just need to do what I need to do and it will all work out. Yes that would be great if some of my depression/anxiety was related to the HCV and after I start taking the Harvoni that some of it would be lifted. I have read some posts where some say that this and that symptom of Hep C went away after taking Harvoni. I would be so so grateful if even some would subside. That would be the best. Has anyone else taken Harvoni or on it now have any of the symptoms of Hep C go away or lessen? Thanks everyone for being here. We have to stick together!

Offline sabre

  • Member
  • Posts: 77
Re: Anxious to get started
« Reply #10 on: June 17, 2015, 02:28:56 pm »
Hi Trixie,

I'm 2 days away from finishing a 12 week run on Harvoni and definitely feel more energetic. I've suffered with fatigue for a very long time and it's really uplifting to feel energy at times of the day that I'd normally crash.

Haven't had much in the way of side effects, either. Some blood pressure spikes that may or may not be attributed to Harvoni. Overall, it's been an easy ride for me and I'm truly grateful for that.

Think positively and stay strong...better days are coming your way!
Infected 1980 / Diagnosed 2008
GT 1 / Treatment naive / VL 190,000
Biopsy 2008: stage 0 grade 1
Fibroscan 2015: F2 mild fibrosis
Chronic kidney disease (due to HCV) / Proteinuria

12 weeks Harvoni began on 03/28/2015
End of treatment: 06/19/2015
Labs on 06/17/2015: Undetected
Labs on 09/21/2015: Undetected (SVR12)

Offline trixiedaisy

  • Member
  • Posts: 8
Re: Anxious to get started
« Reply #11 on: June 20, 2015, 01:59:19 pm »
sabre Thanks so much. I am so happy that you are doing so good. If it only works for the energy when I get started that would be great for me. I am always so darn tired. A lot of aches an pains also but that could be from being 58 years old. lol I don't even know what comes from what anymore. I am hanging in there and know that there are better days ahead. That's all I can do right now.

Offline sabre

  • Member
  • Posts: 77
Re: Anxious to get started
« Reply #12 on: June 20, 2015, 06:49:12 pm »
Trixie, I hear you about the aches and pains..I'm 54 and it seems like every other day some new pain crops up. Luckily, nothing serious or long lasting.

I try and stay active and lift weights. Makes me feel better about myself.

Hoping you get some energy back!
Infected 1980 / Diagnosed 2008
GT 1 / Treatment naive / VL 190,000
Biopsy 2008: stage 0 grade 1
Fibroscan 2015: F2 mild fibrosis
Chronic kidney disease (due to HCV) / Proteinuria

12 weeks Harvoni began on 03/28/2015
End of treatment: 06/19/2015
Labs on 06/17/2015: Undetected
Labs on 09/21/2015: Undetected (SVR12)

 


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