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Author Topic: Advice needed please.....  (Read 7634 times)

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Offline Devil

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  • Posts: 11
Advice needed please.....
« on: November 22, 2015, 10:37:53 pm »
G'day everyone....

I got a real problem here and I have tried google which I am good at using but so far no luck finding any info for my problem....

Found this forum by chance and I hope someone here can please give some advice....

I have questions and am desperate for answers....

So I'm an Aussie living in Australia.....I have Hep C from drug use...Got it like back in 1999....I am now in my late 40's...
Only reason I know I have hep C is cos Doctor told me blood tests said I have it....
Other then that I wouldn't know I have it....Nothing medical at all from the Hep C

I met someone...She is similar age and due to past medical stuff she has no spleen....

I been to Doctor with previous new partners and doc always says that sex is not an issue and passing hep C to partner is virtually impossible through sex....(obvious exception being a cut or wound in that area)....

So person I just met says that cos she has no spleen sex without "double condom" can't happen....
Is this true??.....

She says "you better go and get your viral load done or its the double condom".....
Is she right??....Is she being ridiculous??...
Is she being like a mother who when her kid sneezes once instead of giving them a tissue she bundles them up in bed with chicken soup??...

The treatment process is a nightmare....Injections...side effects means I couldn't work....and I'd have to put up with that for 12 months....

Does every Hep C person need this injections??...

I don't wanna bore everyone by writing a "war and peace" length post but if more info is needed please ask....

I do get regular blood tests for normal medical stuff....Most recent was couple months ago.....Doctor has never said there was any problem with my bloods in regards to hep C....

I really like this woman I have met and am prepared to make the effort so we can have a relationship....

Thank you in advance to everyone for your help, guidance and education on this subject which I so badly need....

Offline KimInTheForest

  • Member
  • Posts: 1,938
  • Believe in yourself
Re: Advice needed please.....
« Reply #1 on: November 22, 2015, 10:43:54 pm »
Hi Devil. I am not sure about the answer to your spleen question re: your girlfriend. However, where treatment is concerned for Hep C, things have changed. It is a whole new era. The cure is here - a real cure. And for most people, it involves taking 12 weeks of pills - in some cases just 1 pill a day, in other cases more than 1 pill a day. But NO injections (that was the old interferon-based method). Also, side effects are minimal by comparison to interferon, and cure rate is very high, upwards of 95% in many cases.

Getting access to the new drugs can be tricky because they cost so much. But there is an Australian Buyer's Club (like the movie Dallas Buyers Club) that supplies people with generic versions from India and China. They are the real deal and will work. Perhaps someone else here can provide the link to that for you.

Anyone can now be cured of Hep C, and with no big ordeal.

good luck!
kim :)
« Last Edit: November 22, 2015, 10:46:53 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 Devil

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  • Posts: 11
Re: Advice needed please.....
« Reply #2 on: November 23, 2015, 12:09:06 am »
Hi Devil. I am not sure about the answer to your spleen question re: your girlfriend. However, where treatment is concerned for Hep C, things have changed. It is a whole new era. The cure is here - a real cure. And for most people, it involves taking 12 weeks of pills - in some cases just 1 pill a day, in other cases more than 1 pill a day. But NO injections (that was the old interferon-based method). Also, side effects are minimal by comparison to interferon, and cure rate is very high, upwards of 95% in many cases.

Getting access to the new drugs can be tricky because they cost so much. But there is an Australian Buyer's Club (like the movie Dallas Buyers Club) that supplies people with generic versions from India and China. They are the real deal and will work. Perhaps someone else here can provide the link to that for you.

Anyone can now be cured of Hep C, and with no big ordeal.

good luck!
kim :)

Thank you Kim for your reply....

I did find a pill called Harvoni....And yes I found page to buy from India....I did make a note that I need to call customs or someone and find out if I am allowed to import medication like this from overseas by mail...

 That link would be awesome....I hope someone can please post it....

Offline KimInTheForest

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  • Posts: 1,938
  • Believe in yourself
Re: Advice needed please.....
« Reply #3 on: November 23, 2015, 01:11:19 am »
Here is a whole long thread of conversations on this forum about the Australia Buyers Club:

http://forums.hepmag.com/index.php?topic=3457.0
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: Advice needed please.....
« Reply #4 on: November 23, 2015, 05:09:46 am »
Hi, Devil. I can comment on the spleen aspect, because my spleen was removed in 1971. In fact, the transfusions during that surgery are what gave me hepatitis C.

Being without a spleen makes the immune system less effective defending against the "bad guys" such as hep C. As your doctor said, it is highly unusual to get hep C from sex, but it isn't completely impossible. I fully understand your girlfriend's unwillingness to take a chance -- she's probably experienced too many things laying her low that those with strong immune systems don't worry about.

Kim's right about the ease and much shorter length of today's treatments. Why wait until your liver gets a lot worse?

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Devil

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  • Posts: 11
Re: Advice needed please.....
« Reply #5 on: November 23, 2015, 07:24:26 pm »
Kim's right about the ease and much shorter length of today's treatments. Why wait until your liver gets a lot worse?

Gnatty

Heya Gnatty and thanks for your reply....

As I understand it Harvoni has been cleared for use here in Aus but is not yet on the Gov's PBS list....When it is the script will likely cost about $30 a month.....
With my Hep C not in need of urgent treatment I had hoped I could wait till it's on the list and I can afford it....

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Advice needed please.....
« Reply #6 on: November 23, 2015, 07:41:39 pm »
That makes sense. Your fellow Aussie, moderator Philadelphia, may have a sense of when Harvoni might get on the Gov's PBS list.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Advice needed please.....
« Reply #7 on: November 29, 2015, 06:23:48 am »
I wish I could add more information. I know the peak bodies are fighting hard for the new DAAs to be listed soon. We had thought before Christmas, now it's looking perhaps like Feb. me, I'm thinking halfway through the year. It's exhausting because people lobby so hard, momentum builds,  then government prevarication grinds everything to powder.

Soo, I hope. Soon.
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 Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Advice needed please.....
« Reply #8 on: November 29, 2015, 09:08:10 am »
Hi Devil,

Another Aussie here, down Melb way. Did you get my pm yesterday?

Gaj

Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Devil

  • Member
  • Posts: 11
Re: Advice needed please.....
« Reply #9 on: November 29, 2015, 08:23:31 pm »
Hi Devil,

Another Aussie here, down Melb way. Did you get my pm yesterday?

Gaj

No...Just the link you PM'd me to another forum....

Offline mikeo52

  • Member
  • Posts: 19
Re: Advice needed please.....
« Reply #10 on: October 23, 2016, 05:24:26 pm »
I'm 64 and was diagnosed with hep c several years ago around 2002. I did the peg intron ribavirin thing, but do to a low white blood cell count had to stop treatment. A recent CT scan in my lower abdomen because of a kidney stone reported cirrhosis with varicosities. My liver enzymes have remained stable since my treatment was stopped. I was wondering if Harvoni might work for me.I do indulge in an occasional glass of red wine, but have since stopped since getting this news which was only 2 weeks ago. I'm having lithotripsy for my kidney stone this week. 

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,255
  • Get tested, get treated, get cured, fight Hep c!
Re: Advice needed please.....
« Reply #11 on: October 23, 2016, 09:57:37 pm »
Hi Mike and welcome

When you said "varicosities" do you mean esophageal varicies which are enlarged being in the esophagus the swollowing tube? Is your doctor treating you for them? Do you know what grade they are how enlarged? I was diagnosed with them with an upper endoscopy. Mine were grade 3 large so they required treatment. I had them banded over several months.

My liver enzymes stayed steady over the entire time after my diagnosis just slightly elevated not by much. But after being infected for 30 years I was diagnosed with liver cirrhosis by liver biopsy. Liver enzymes are generally mildly elevated with hep c and stay fairly consistent.

Yes having cirrhosis you cannot drink any alcohol ever again even once you are cured.

To answer your question can you  be cured, I had hep c for 37 years I treated 3 times with interferon based treatment. The first time was 3 shots a week of just interferon for 6 months. Next was interferon 1 shot a week with ribavirin. Then another treatment with a clinical trial medicine along with interferon and ribavirin. I was a null responder to all treatment. My viral load actually increased on treatment.

Then in January 2008 I was diagnosed with cirrhosis. 

I treated with two of the new medicines (3/2014 to 7/2014)  sovaldi and olysio for 12 weeks but relapsed 12 weeks after I finished treatment.

I started a 24 week treatment with Harvoni (11/2014) and was not detected at 12, 24 and 44 weeks after treatment finished. I am now cured.

If I can be cured you can be cured too.

Harvoni is not for all genotypes but if you are genotype 1 the most common genotype in the US Harvoni is a treatment you can take. If you have a different genotype other equally effective new medicines would work better. The correct treatment  for your genotype will be determined by your hepatologist.

Buy yes you can be cured!
« Last Edit: October 23, 2016, 09:59:42 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline mikeo52

  • Member
  • Posts: 19
Re: Advice needed please.....
« Reply #12 on: December 08, 2016, 08:44:52 pm »
Hi Lynn. sorry it has taken me awhile to get back to the forum, but my first kidney stone procedure did not work and I wound up back in the er a second time! what a nightmare. Anyway all is good now. I believe I have selected a doctor that is in my network for the hep C. I have 1 more appointment. with the urologist and hopefully after the new year will be seeing the new doctor. Your response was very encouraging, and I feel that I too can be cured. Things do happen for a reason. Had I not had this kidney stone thing I might not have found out about the cirrhosis situation. I can certainly do without alcohol (never really had a drinking problem) and believe it or not I have even lost a few pounds since I stopped drinking in early October! I will be posting soon with any new developments. Thanks, Mike

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,255
  • Get tested, get treated, get cured, fight Hep c!
Re: Advice needed please.....
« Reply #13 on: December 08, 2016, 09:31:55 pm »
Wow sorry to hear about your tough time with the kidney stones I have heard they can be extremely painful.

You are on the path to wellness now just take it one step at a time and you will make it to the other side of all this.

Best wishes
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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