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Author Topic: New to forum don't quite know what I'm doing!  (Read 10909 times)

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Offline ejmonk

  • Member
  • Posts: 7
  • Recreating myself
New to forum don't quite know what I'm doing!
« on: September 12, 2014, 08:01:29 pm »
I've never been on a forum (other than Facebook) so hello! I've treated twice with the ancient cocktail, Interferon/Ribaviron (horrors) without any success. I'm now starting this new Sovaldi/Olysio plan. First, I'm feeling very grateful for the amazing insurance I have and second very hopeful that this is going to work. What I've read sounds inspiring. Today I had a talk with the virus that's decided to live rent free in my body for so many years. I told it that the depot is fast approaching and it's time to part and say goodbye. I don't know how I'll feel tonight when I take the first dose, but all I know is that I'm much more than this disease, and can take a bit more discomfort for a permanent cure. I'll be checking in!
ejmonk

Offline susanm719

  • Member
  • Posts: 5
Re: New to forum don't quite know what I'm doing!
« Reply #1 on: September 18, 2014, 05:08:20 pm »
I've been on Sovaldi and Olysio for almost 9 weeks. I was undetectable with normal enzymes after week 1! What a difference from the Peg-Ribo combo that I took 11 years ago. How nice too that insurance is covering these miracle drugs.
I have really not had too many side effects. I should say, what I've had is so minor compared to the prior treatment, that I may not even realize that, they are side effects from the drugs. Things I've noticed, though--some insomnia, but not too tired in spite of that; skin sensitivity, especially in the beginning. I play golf, and noticed that the top of my head got really hot, so now I wear a hat instead of a visor. I wear SPF 50 sunscreen, so haven't gotten sunburned. My appetite is slightly diminished, and I've lost about 5 lbs, but that's not a negative effect! Overall, I am so hopeful and grateful for these drugs.

Offline Picnic

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  • Posts: 110
Re: New to forum don't quite know what I'm doing!
« Reply #2 on: September 18, 2014, 05:51:07 pm »
Dear ejmonk,
I am so happy for you!  I went through 3 interferons. Oh the Horror!! I found out I have the poly morphism gene that says there is very little chance of that regiment working! Thanks for telling me now!! I am now on S/O ending my 6Th week! Very little sides. Drinking water and exercise. Undetected on day 16! Liver enzymes normal. I wish all the same for you and a SVR. Good Luck!
Larry

Offline ejmonk

  • Member
  • Posts: 7
  • Recreating myself
Re: New to forum don't quite know what I'm doing!
« Reply #3 on: September 19, 2014, 01:13:41 am »
Dear Picnic,
Thank you! What I'm reading about the short amount of time it's taking to be undetected is remarkable. I do believe the exercise is what has kept me sane all these years! Even on those dark, headachy, days when I felt like something the cat drug in, I'd put one foot in front of the other and walk up my hill! Yes water is our friend. It's almost a week for me and I feel great!
Best
ejmonk

Offline ejmonk

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  • Posts: 7
  • Recreating myself
Re: New to forum don't quite know what I'm doing!
« Reply #4 on: September 19, 2014, 01:24:14 am »
susanm719 I do miss the sun, but don't really want to test how sensitive this treatment makes you! This weekend I felt like I belonged on the set of true blood! Hiding from the heat! Yes you said it, these are truly miracle drugs. Now they should make the same strides in breast et al cancers. Grateful also every day,
Best.
ejmonk

Offline susanm719

  • Member
  • Posts: 5
Re: New to forum don't quite know what I'm doing!
« Reply #5 on: September 19, 2014, 06:02:59 am »
ejmonk: I also have exercised every day, and eat a healthy diet. I also believe in milk thistle, but have had to stop that while on tx. Monthly blood tests today; I'm 3/4 finished.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to forum don't quite know what I'm doing!
« Reply #6 on: September 20, 2014, 10:31:48 pm »
Is tx short for interferon?

Offline susanm719

  • Member
  • Posts: 5
Re: New to forum don't quite know what I'm doing!
« Reply #7 on: September 21, 2014, 06:15:13 am »
I'm sorry, Tess. I used tx as an abbreviation for therapy. No, I'm not on interferon. I took it and the ribavirin 11 years ago, but became allergic to the drugs. Now I'm on Sovaldi and Olysio, 9 weeks finished.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to forum don't quite know what I'm doing!
« Reply #8 on: September 21, 2014, 03:47:46 pm »
I am doing the sovaldi and ribavirin for 12 weeks - Just started week 5 today.  Biggest complaint in the skin issues and itching.  I was too chicken to do the interferon therapies, even the pegalated ones when offered to me.

Offline susanm719

  • Member
  • Posts: 5
Re: New to forum don't quite know what I'm doing!
« Reply #9 on: September 21, 2014, 05:18:41 pm »
Tess,
Where do you live? Too bad they gave you ribavirin. That's what I was allergic to--major rashes and itching. I'm not having that with the Sovaldi + Olysio combo.
Good luck to you.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to forum don't quite know what I'm doing!
« Reply #10 on: September 22, 2014, 02:39:05 am »
I'm in Middle Tennessee..........seems unless it is known you are allergic insurance will only approve sov and riba for type 2 as the olio is considered another specialty drug.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: New to forum don't quite know what I'm doing!
« Reply #11 on: September 22, 2014, 11:39:58 am »
Tess - I think it is critical to get the itching/rash under control. I hate taking meds, esp antihistamines, but I found that prescription Atarax (hydroxizine) at night saved my life. It helped me sleep, and kept the anxiety down. I took a very low dose and gradually increased. I took claritan in the daytime, and towards the end switched to 1/2 an Atarax in the morning.
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 Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to forum don't quite know what I'm doing!
« Reply #12 on: September 23, 2014, 10:23:02 pm »
I do not itch at night when I go to sleep.  I itch about an hour after taking ribavirin and then it subsides after another hour or so.  The evening dose is the most annoying.  I have found that using a lotion for eczema that does not have any steroids works well if I use it as soon as any itching starts.  I have the antihistamine dr gave me to use only as needed which he emphasized.  Fortunately I am retired and out in country setting so no stresses to cause any anxiety.  Only me and a couple of cats at this time. ha.  But I will use the antihistamine if I need it.  So far the Gold bond Ultimate eczema relief is a new product I found and it stops the itch within minutes of using it and lasts most of the day I am happy to say. I appreciate the advice and will definitely use the meds if the lotion stops working. Only rash that seems to want to stay is on my legs.

 


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