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Post Info TOPIC: goodandbadnews
Tig


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Thanks Malcolm, I appreciate your knowledge! I wasn't aware of the Aussie info, that's good to know and helps relieve my tension some. You're all aware of the impact different things have on our attitude in general with this stuff and negatives aren't helpful at all. I want this to work so much and your helpful remarks really matter. Thanks again. Brady



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Tig

67yo 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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Hi again Tig56,

Remember that not all relevant data is published on the Internet. Incivek and Victrelis are 'old drugs' in the USA, so you will not see any recent studies on SVR rates. Make sure you check the date published and only trust recognised Journals and sources. I have access to on-line journals but cannot give links due to copyright. The old data from 2011 and early 2012 has been proven to be incorrect. There was initial biased reporting of Incivek results. In Australia, Victrelis is the drug of choice. You'll be fine. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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joaneh,

     thanks for the kind words. sounds like you got off easy only using benadryl. congrats on your successful treatment of tx. how envious i am....

sandy,ucbgal

 



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kellie,

     thanks for the comforting advice. sometimes i feel that our drs. could learn a thing or two

reading this forum. i'm going to google the zantac and atarax. i'm using cortizone 10,

witch hazel,olive oil,2 zyrtecs,2 25mg.hcl and 0.25% desoximetasone cream. it started friday

night with a bang. i have it somewhat under control. once i start seeing blisters i'll

take immediate action. good luck to you on treatment.

sandy,ucbgal



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Tig


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Thanks Malcolm and Kellie, it helps. I'm still researching today, I've been at it for hours and am as confused as ever. The most positive thing I've read all day was the comments from you two and I thank you for that. Yes Kellie, the PDF's all seem to be from 2011 and 2012. The SVR %'s seem to be just as variable, so I'm not sure what or whom to believe as I search the documents and information. Somewhere just prior to starting treatment I remember receiving the information that either PI offered approx. 80-85% SVR at EOT+. I remember my doc telling me that the side effects from Incivek were very difficult and his experience with it had more patients ending treatment as a result of that vs those on Victrelis. It's my own fault for not going into the decision better educated, I was thrilled to be given the opportunity to get the treatment and trusted the doctor to know best. Was I given the best info? That's what I'm having a problem with. We all started this treatment with the best of intentions and I have to ask why would Victrelis be a first choice when all things seem(ed) equal to me? I've read it all and I was certainly eligible for the Incivek, if not better qualified IMO. I wish I would've been given a choice, perhaps given more time to research it as I've done now. I can understand why your NP made you promise to stop exploring the web during treatment Kellie! I'm a reader and live on the web, research is a way of life for me once I get something to explore. This is no different and I don't know that I could ever promise to stop looking. I guess it comes down to simply believing and wanting to have an equal chance to beat the dragon as I enter the fight of it. If I'm expected to do my part and stick with it, to fight it according to the rules, I believe it's only fair to expect to get the best, most current method of fighting it. Finding out after the fact that I may not have received the best advice is very, very disappointing. I'm looking and looking for the information to support what I was told before I started and it's difficult to track down. I'm worried that I made the wrong decision and that's a difficult pill to swallow... Thanks again! (You guy's are great!!)



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Tig

67yo 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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nursechic,

     thanks for the advice. it's comforting to know that someone else got the rash this quickly.

i took your advice with the zyrtec and i'm using olive oil,witch hazel,cortizone10,and 2 25mg of hcl.

unfortunately i had a severe rash last summer from mosquito bites,thus i have the meds at

home already! couldn't believe my dr. recommended benedryl although he knows i get extreme rashes from certain meds,bug bites,and pollen.

sandy,ucbgal

 



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Oh, tig, one more thing - look at the date on the bottom of that pdf link. It's from 2012. Its a bit dated. chin up bro K



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HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!



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Hi Tig56,

I agree that scouring the internet for HCV info can drive you nuts. The most recent studies found virtually no difference in SVR rates between Incivek and Victrelis. Incivek is more potent initially but is so toxic it can only be used for 12 weeks. Victrelis is slow but steady, and works best with a leadin to reduce the VL.  At 12 weeks, the Undet. rates are the same.  For cirrhotics and patients doing 48 weeks, Victrelis is the drug of choice. Many patients have to stop Rx because of the rash and ano-rectal issues from Incivek. The dropout rate for Victrelis is lower, and then it is mostly due to anaemia. Victrelis appears to have worked for me, but it gave me a hard time. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm

Tig


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I'm a bit perplexed here and looking for some thoughts. I read the included article and read that there is a considerable difference in SVR between Incivek and Victrelis in GT1 patients. That being 79% with Incivek and 66% with Victrelis. Why would a doctor select a treatment regimen that has such significantly lower success rates? I'm borderline pizzed off because these side effects are bad enough and finding that your (my) chances of SVR have been automatically reduced don't sit well with me right now! What could the benefits of using Victrelis over Incivek possibly be, aside from differing side effects? I've heard that reading this information can drive you nuts and I'm starting to agree. I see my doc this week and I hope he's ready to get an earful... I'm not happy right now

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Interferon,%20Ribavirin%20and%20HCV%20Protease%20Inhibitors.pdf



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Tig

67yo 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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Hey there Tig, before I started treatment I asked my NP this question.

Actually my motivation was trying to avoid all the extra fat. "silly vain me".disbelief

The first thing she said was they used the Incivik almost exclusively at this medical facility, and they had tons of experience treating the sx. She also echoed what Mallani said about less time on the treatment. 24 weeks vs 48 and bamm we would be finished if I und at 4,8,12 with a 95 to 97% svr, but only if I und at those early weeks though.

But she did give me the choice. I ended up staying with the Incivik. It's no picnic though. I'm a miserable soul for the most part and look forward to getting off the Incivik.

So maybe I'm thinking different locations in countries and the world and different drs use different stuff. I could be really wrong on this. I've haven't had any formal training with this.

When I was at the height of the Incivik rash I was second guessing my NP thinking I should have done the Victrelis because I could handle the anemia better than the skin stuff, as I rarely get anemic. I'm non cirrhotic so I just went with the experience and advice of my NP. She gets paid a lot of $$ to figure it out and make the big decisions.

Just dive in Bro, get it done, you will succeed. Trust your docs.

Before treatment I had to promise my NP i'd stop surfing the web for info. It really put my head in a spin.

I wish you peace today, Tig, K



-- Edited by Kellie on Sunday 23rd of June 2013 08:28:03 PM

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HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!



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Sandy,
Treat skin rash as it appears. Your body is
Still in shock the first few weeks from medicine.
It will adjust but Invicek is known for rash
Worse than RIBA for most.
Sounds like u r doing everything right.
Rash will happen. Keep Benadryl going these first
Few weeks. I remember how scary it was
When I started. We are here for you;)
Keep up the good work to save your liver!

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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Also I used a tea tree and vit e cream from Derma E twice daily. A small amount over the desconide cream.  K



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!



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Hey there ucbgal, I'm on the incivik too. I got a rash also the very first week. Stay on top of this and let your doc know if the rash gets more aggressive. Be proactive when you call the doc and demand a call back from the doc or the nurse. Talk to the doc about these things I mentioned. sx control is importantebiggrin

Try and do some gentle movement, stretching daily. 

My doc gave me a rx cream called desconide .05% to use twice a day. Also in the beginning I took a Zyrtec 10 mg twice a day also. Once the rash started really kicking they prescribed me Atarax 25 mg to use at night to help me sleep. Then after Ranelle mentioned the Zantac, my np gave me an rx of this also.

I started taking oatmeal baths also. These gave me great relief. Once in the a.m. to get started and in the pm to get me to bed. I have the recipe. It's homemade and something powerful. I drink about a gal of water a day, along with the wonderful coconut water.

I really had to work hard at keeping it under control -sometimes though the rash had to do it's thing, no matter what I did. Just keep dialoging with your medical team.

The good news is that the rash can subside and you will get through this. I'm here for you. Let us know how it's going..... K



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!



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I'm on incivek and I got a rash within the first few days. I used baby and coconut oil on my skin and not lotion. The swollen tongue and numb lips does not sound good! I also checked with my specialty pharmacy about using Zantac 150mg along with my triple therapy and Zyrtec. And they said it was fine. Zyrtec is an h2 histamine blocker and is used in allergic relations all the time. 

Hope this helps! Stay strong and don't scratch!



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Dx:2007; Genotype 1; VL 1.4mil, start triple therapy (peg/rib/inc) 6/2/13 (Failed), Harvoni 12 weeks EOT undetected, 6 month EOT UNDETECTED!



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greetings,

     the good news is that since i stopped all that herbal stuff,for example m.t.,liv.52,and ip6, my ast&alt have lowered. my v.l. only dropped 100k.

     the bad news is that the dreaded rash decided to have a party on both the front and back of my torso on day3. did anyone ever get the rash that quickly? called dr. to inform and was told to take benedryl. most of it is a prickly red dot heat rash. also i have some raised welts on my chest and a 2in. by 3 in. red welt where my nicotine patch was. right now i have it  somewhat under control with zyrtec and hcl 25mg. if i start to see blistering is that when i seek medic attn?    am using all your tips and keeping myself well hydrated and moisturized. i highly recommend pure coconut water. it's refreshing and full of potassium.

     forgot to mention that i have severe allergic reactions to certain meds and bug bites. also on day one had a swollen tongue and numb lips. i guess i'm just getting nervous.

sandy,ucbgal



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