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Author Topic: Just joined the forum  (Read 13877 times)

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Offline Jl1957

  • Member
  • Posts: 4
Just joined the forum
« on: May 01, 2014, 10:49:31 pm »
Hi to all,
I just joined the forum. I'm in my 5th week of peg-rib-solvaldi. I'm type 1a with no liver damage and otherwise healthy. My side effects are; fatigue, dry and itchy skin with bumps on my chest and back, fever, trouble sleeping, night sweats, irritable, weight loss and achy muscles but I'm managing. My 2 week blood work showed ALT 15 and AST 20! I just had my 4 week blood drawn and I'm excited to see what God has in store for me. I'm thankful to find this page. Since this treatment is so new, it's difficult to find something like this. I'm happy to share my experience with this treatment and welcome input or answers to any questions I may have. God Bless!
Julie :)

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just joined the forum
« Reply #1 on: May 02, 2014, 12:22:48 pm »
Welcome!  (I always feel strange saying welcome, as it is a club I wish no one joined! - but given you are here, glad to meet you!)

Did they do a viral count at 2 weeks?  They will at 4, and let us know what that is.  Hopefully UD! Your side effects seem similar to the Incivek triple therapy, especially the irritability and rashes - I had wide mood swings.  And of course the interferon is going to cause flu like symptoms controlled by ibuprofin and staying hydrated.  They will give you cream for the itching, but I found the OTC hydrocortisone anti-itch creams did just fine.

The great news is the 12 weeks!  Wow, you are almost half way.  Big change from the standard 48 weeks prior to May 2011, with half the success rate!

Can't wait to hear more about your treatment experience and results.  And all of us are pulling for you!  Thanks for sharing!

Good luck!
jack

Offline rikkyde

  • Member
  • Posts: 29
  • Detected March, 2014; type 1A
Re: Just joined the forum
« Reply #2 on: May 02, 2014, 03:22:14 pm »
Hi JL,


I'm in week 3, with many of the same symptoms. I've found myself taking lots of oatmeal baths for the itching (as well as the muscle aches - massage also helps). Pick up some Aveeno or generic at the local pharmacy. If I can't get to sleep I've been taking a sleeping pill - that helps also.


Hang in there; only 7 weeks to go for you. And I'm right behind by 2 weeks.
_________________
Rick

Offline Jl1957

  • Member
  • Posts: 4
Re: Just joined the forum
« Reply #3 on: May 02, 2014, 07:57:16 pm »
Thank you Jack and Rick. It's a blessing to find this forum. I've waited 9 years to treat since the old treatment only had a 40% UD rate and the symptoms for 48 weeks were too much. I kept myself as healthy as possible by eating right, juicing etc. I tried all kinds of alternative treatments too, even the intervenos ultraviolet light thing  ::)

Rick,
Let me know how you're doing. I will keep everyone posted when I get the VL results back. God Bless from the lady dragon slayer.
Julie :)

Offline Jl1957

  • Member
  • Posts: 4
Re: Just joined the forum
« Reply #4 on: May 09, 2014, 06:03:52 pm »
Got my 4 week viral load test results back. Undetectable!! Thank you God. Now, I just need to keep doing my treatment plan. Taking my 7th shot this weekend. I also took a B12 shot today, to try to help with the fatigue. My white cell, red cell and iron counts are low. Juicing some fresh veggies, etc as well.  :)
Julie :)

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Just joined the forum
« Reply #5 on: May 09, 2014, 07:02:40 pm »
Congratulations. That is wonderful news!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline jberlin

  • Global Moderator
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  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just joined the forum
« Reply #6 on: May 09, 2014, 08:38:50 pm »
UD at 4 weeks!  Fantastic news and you are now over 90% chance of cure if you finish treatment. Makes it worth it doesn't it? Good luck with the next weeks and give us updates. -jack

Offline Jl1957

  • Member
  • Posts: 4
Re: Just joined the forum
« Reply #7 on: May 09, 2014, 09:50:58 pm »
Thank you so much!!
Jack, I couldn't stop crying when my GI gave me the news. It is so worth it!! And you can count on me to finish treatment!
Blessings!!!!
Julie :)

Offline patsy

  • Member
  • Posts: 27
Re: Just joined the forum
« Reply #8 on: July 02, 2014, 05:54:17 pm »
Hi everyone! I also just joined the forum. Glad I found it. I am also Genotype 1a and in my 9th week of Rib/Solvaldi/Peg. I didn't notice side effects until about week 5. I thought, wow this isn't as bad as I thought it would be. Well, it has hit. Hard. Sooo tired, sooo hungry all the time, look a lot older, bruise easily, itchy face, dry lips, sore tongue. But the worst is the "crazy thinking that started about 3 weeks ago. Because I have a history of depression etc. I had to be cleared by a psychiatrist to take this treatment. They cleared me but I have lately needed to talk to someone. That is why I am glad I found the forum. Also, my gastrointerologist has just kind of dropped out of the picture. I feel that she hardly pays attention to me, doesn't keep up with my blood tests, injection training, never calls to give me appointments. Mostly she just leaves it all up to her office nurse who is probably way overworked. The pharmacy is fantastic though. They submitted my name to a foundation that is paying all of my co-pays which you know are a lot! They are right on top of when I need refills, have a 24-hr hotline and are just basically super professional. Which is more than I can say about my doctors. I am looking forward to reading other people's experiences now that I found the forum.

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just joined the forum
« Reply #9 on: July 02, 2014, 06:00:48 pm »
Patsy,

Congrats for being on the path to rid yourself of this virus.  Is it a 12 or 24 week treatment?  What was the results of your 4 week labs? 

I did the earlier triple therapy for 24 weeks, with Incivek, Peg, Riba - and I found the mood swings sometimes uncontrollable...  Don't underestimate what these chemicals can cause - keep talking to us, and have someone nearby as much as you can.

Good luck and let us know your progress! 

jack

Offline patsy

  • Member
  • Posts: 27
Re: Just joined the forum
« Reply #10 on: July 02, 2014, 09:00:32 pm »
Thanks Jack. I'm on the 12 week treatment. The 4 week labs said neg Hep C. Then I found out that the true result isn't until 3 months after but it is promising. I didn't really even feel sick and thought about just "ignoring" the whole thing but my doctor told me to ask the pharmacy about financial help and when that came through I decided to try it. The only reason I found out I had it was that I tried to donate blood to the Red Cross and got a letter telling me they couldn't use my blood... I think I may have lost a friend during this. Started complaining too much I guess and talking too crazy. Haha! I don't have a lot of people to talk to but I do what I can. Thought about seeking therapy but by the time you get to a point where all the preliminary stuff is out of the way, sometimes it's just not the right person and I don't know, I'm just not up to all that. That's why I am glad I can come here and talk a little and read a lot. Just knowing other people are going through what you are going through is helpful. The pharmacist told me though that it might be 6 months after the treatment ends before the medicines get out of your system! :( I will hang in there though, no matter what.

Patsy

Offline jberlin

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  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just joined the forum
« Reply #11 on: July 02, 2014, 09:43:01 pm »
Patsy,

Let me give you a couple of facts... Being UD at 4 weeks is huge.  That means the meds are working and billions of viruses in your body are wiped out.  Because you are UD at 4 weeks, if you complete the full 12 weeks (almost there!) you have over a 90% chance of cure....  Third thing, you will start feeling better within days of stopping the meds, and feel better and better.  Last point, this sure beats a liver transplant, or worse!  Congrats... you are going to be declared cured in about 4 months time! 

Let us know,
jack

Offline optimystic

  • Member
  • Posts: 15
Re: Just joined the forum
« Reply #12 on: July 02, 2014, 10:06:14 pm »
seems it won't go without a fight of sorts. thankfully our bodies are forgiving as they are. a Dr. once told me that our bodies recover with beauty and symmetry as best they can, the rest is up to us, and a great support team. God Bless.

Offline Mike

  • Member
  • Posts: 999
Re: Just joined the forum
« Reply #13 on: July 02, 2014, 10:10:46 pm »
Hi Patsy,

Being UD at 4 weeks is a great marker for a successful treatment (tx) outcome!

Once you hit the 12 week UD mark, the chances of a cure  even better.

I finished the same tx in April and will get my end of treatment (EOT) 12 week blood test next week.

The side effects wear off after the first month, though I still have some minor fatigue and insomnia.

Hang in there - you'll be done before you know it and well on your way in slaying this dragon!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

 


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