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Author Topic: Scott McGregor  (Read 8754 times)

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Offline scott

  • Member
  • Posts: 23
Scott McGregor
« on: March 07, 2015, 03:00:44 pm »
Hi folks,
as with many of you HCV has been in my blood for many years now. In my signature there is a list of my failed treatments, not discluding the harvoni which I have been taking for just over 6 weeks now.
 Well finally this is the best treatment they have tried because at four weeks I have been found un-detectable. I realize that I'm still far from the 6 month post treatment SVR.
My insurance company only wanted to approve 3 months of the treatment pending a two month follow up to determine wether I need firther treatment which is why my doctor put me on ribavarin, Dare I say I feel he should have gotten me on that from the get go knowing full well I was only approved at that time for three months. Will it make a difference tha he started me on riba 1 month into harvoni if no harvoni avails itself to me in another 6 weeks for the long run? That causes me some stress as I was estimated between 10 and 20 % liver function remaining, last summer during sovaldi /ribivarin/interferon treatment which got me close to undetectable for a very short time.
 On harvoniSide effects were minimal: perhaps one sleepless night per week with nothing else to speak of. I was even taking on 2 hour workouts with weight training and cardio combined and really feeling great, even since the ribivarin - no bad sides except the sleepless nights became a little more frequent and upon mentioning this (just yesterday 3/6/15) the doc immediately prescribed ativan for sleep.
I feel he doesn't always make the right call when it comes to throwing drugs around the room so to speak so I would like anyone to feel free and tell me if ativan every night is a good idea? On previous treatments i was told to take tylenol all I wanted only to find out later that tylenol burns the liver and allows new spaces for the HCV the reside and dig in. OK he gave me the lowest dosage made but since taking that stuff I feel off all day long and am really struggling to get a workout in. I am going to discontinue ativan and only use it if I've been lying awake for over two hours. Hey some nights I would lie there until 5 am without sleeping!
 I have cut out all but the most basic amount of salt in my diet 1500 mg per day is my goal, but I rarely have more than 750 mg a day, an as little fat and sugar as possible.
Anyone have a better alternative to insomnia than gulping down a pill?
Also I haven't seen normal colored stools since 2009 which when reported to my same doc said it could be unrelated. same answer every six months since, until last summer when I had the breakdown. severe adema high feverpoor concentration, unable to communicate verbally. Boy that was scary i was hospitalized four nights! And that awful hospital food! YUK! but I digress!!!
I have what is commonly referred to as sider web veins on my chest, my nurse does not knkow if those ever go away.
Last summer they had me on somethin novostalactone i don't recall the exact words but it made me grow breasts, took my damn doctor3 months to finally change the medication by which time i wasconsidering a traing bra.

Well there it is for now folks, I got a little of my rant on at the end apologies for that but feel free to offer any advice you can, especially around getting to sleep. I'm 56 years old and at 33 was a karate expert. Since then I became a machine operator for a demolition company so I was quite out of shape. now that I'm getting in shape I don't want to loose any more time, i do what I can and face the fact I may have to wait until post medication to get strong again.
« Last Edit: March 08, 2015, 08:35:44 pm by scott »
First infected with HCV 197?
Identified as genotype 1a /cirossis
first treated 1999 NR
2009 NR
2012 pegatron / boceprivir 5 months NR
2014 pegatron /sovaldi 3 months non sustaind virologic response
2015 Harvoni/Ribavarin EOT 12 weeks SVR
2016 Harvoni/Ribavarin EOT 24 weeks SVR - undetectable, finally! YAY!!

Offline Junkyard

  • Member
  • Posts: 24
Re: Scott McGregor
« Reply #1 on: March 08, 2015, 08:06:56 pm »
Scott,
I got diagnosed or figured out something was wrong in 2001. I have migraines that have gotten worse through the years. I had a doc that prescribed basically caffeine and ketoprophen for the headaches.  That did good for some years. Then the headaches got worse and basically daily. I went to him and he said oh! Those mess cause headaches to reoccur. That was when Tristan's first came out.
My sleep has been not very good for 25 years. I had the night sweats etc.
I have been a runner for 30 years. I took that very serious and ran lots and tried to go faster etc.. The desire kind of ebbed to be an athlete for some years. I still ran fairly regular but not near like before.
Speed up to 2009, I got a new pcp.  He did blood tests, that's when I was diagnosed with hcv went to gastro doc. He did lots of tests, biopsy etc.. Came up with fairly high vl and cirrossis..then went though peg int and rib treatment. Was a null responder and was very weak and tired.  Then came telaprivir,peg int and rib. Did 6 months of that. Cleared vl in 4 weeks, went through the rest of treatment and did the dot blood work and relapsed. 
Through all of this my pcp got me to use lunesta. I have used that for a long time. I started Harvoni 2/13/15. Sleep is when I can get it now,regardless of lunesta or not. After 3 weeks on  Harvoni and Rib I am so weak.  Even though I do workout etc. 
bottom line Scott, these drugs will effect a lot. More than we think.  Sometimes rest is better than exercise for the body and liver.  Listen to your body. Make sure you have confidence in your docs. This Harvoni may be a cure but it will effect you different than everyone else. Sometimes a good fat meal does as much good for the body as anything so watch the diet in that sometime your body needs the extra colonies and fat as well.  The info I have about all these drugs is, they work in the real world different than in the trials.
Be patient and try to relax when you can. If you do clear the virus, you will have plenty of time to get your skills back.
Good luck

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Scott McGregor
« Reply #2 on: March 08, 2015, 08:17:15 pm »
Hi Scott. I have no suggestions re: insomnia. Good luck with your treatment! So many people have had positive results from Harvoni, there is a good chance you will too. I may be starting Harvoni+Riba soon myself (depending on how certain things work out). So I will be eager to hear your results. Keep us posted.

Wellness to all,
Kim
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 scott

  • Member
  • Posts: 23
Re: Scott McGregor
« Reply #3 on: March 08, 2015, 08:28:10 pm »
will do! ;)  and thank you junkyard!
« Last Edit: March 08, 2015, 08:32:19 pm by scott »
First infected with HCV 197?
Identified as genotype 1a /cirossis
first treated 1999 NR
2009 NR
2012 pegatron / boceprivir 5 months NR
2014 pegatron /sovaldi 3 months non sustaind virologic response
2015 Harvoni/Ribavarin EOT 12 weeks SVR
2016 Harvoni/Ribavarin EOT 24 weeks SVR - undetectable, finally! YAY!!

 


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