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Author Topic: Got my meds in hand but I’m afraid to take them  (Read 3021 times)

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Offline LucyLoo

  • Newbie
  • Posts: 2
Got my meds in hand but I’m afraid to take them
« on: July 08, 2018, 09:19:50 pm »
I’m new so please bear with me, I never posted on a forum before.
I believe I contracted while in basic training in 1982. We were stationed overseas for many years and the “mad cow” thing has kept me from donating blood for all these years. (Or I’m sure this would have been detected much sooner).
Anyway, I put my stats down at the bottom but wanted to add that I am an overweight non-drinker that suffers from hypothyroidism and the doctors have always attributed my high liver enzymes to a fatty liver. It wasn’t until now that anyone suggested I get tested for Hep-C. (Not even after a hospital stay in September for pancreatitis).

My ultrasound showed no masses or irregularities only that the findings went along with fatty liver disease. I figured I could just treat and eat better.
Then I got the F4 A2. Scared me but I felt positive I could get what I needed and “fix” this. My Gastro ordered 12 weeks of Harvoni. 
Then I got the results of my AFP and was floored. My GP said I most likely have liver cancer and told me to have my Gastro order an MRI right away.
My Gastro said it was unlikely that I had HCC but to get the MRI just in case.
My first month was delivered a few days ago.My nurse texted the Dr and he said to start it, but I’m scared.

Here is my question:
If I start the Harvoni and then find HCC with the MRI, will I be able to treat the HCC while on Harvoni? Or will it get much worse if I wait 12 weeks?
 Isn’t the AFP crazy high to not be suspect? Even with cirrhosis?
Thank you all so much for any help at all.
1982 contracted -Military
2018. - April DX
AST 103 ALT 82
F4 A2
GGT 122
AFP 71.9

Offline Mugwump

  • Member
  • Posts: 696
  • My number of posts means nothing, piscor ergo sum!
Re: Got my meds in hand but I’m afraid to take them
« Reply #1 on: July 08, 2018, 11:17:32 pm »
I suggest that you read the literature about high afp and chronic hcv infection. Here is the best source available that is used currently by the medical profession to make difficult clinical decisions. And yes hepatic steatosis or fatty liver is strongly associated with elevated levels of AFP https://www.ncbi.nlm.nih.gov/pubmed/18795704

If you have no confirmed masses on the liver or other sources of liver damage then the choice to treat with Harvoni or the other new DAAs (direct acting antiviral) is made based upon how stable your kidney function is not necessarily how damaged the liver is.

Because you have cirrhosis you should be considered for 24 weeks of treatment if you do not have a fast response to the drug and your doctor should be doing a RNA by PCR test at 4 weeks to determine if you have a fast response to Harvoni and you are already clear of the virus. If not then the treatment duration should be increased.

I am f4 compensated and was successfully treated with Harvoni 1 week after it became authorized for use in Canada. I also have a problem with being overweight but I am quite active and found that ridding myself of HCV once and for all has changed my life for the better to say the least. Because I had a history of treatment my Harvoni treatment was 24 weeks.

There are others who have experienced difficulties with Harvoni and other treatments based upon Dr Sofir method of delivery of anti virals. 

The best advice is to stay well hydrated and let your system clear the broken down by products of dead liver cells that will be flushed as well as the toxic by products of having an excess of liver damage being done by HCV. Above all staying very active, eating healthy, staying well hydrated  while on treatment helped me and I experience very little in the way of side effects except myalgia (muscle and connective tissue pain) which cleared in about 6 months.   

You can experience side effects with Harvoni or other DAAs but most people, even those who have cirrhosis have a better time with the new treatments than the old treatments which could very quickly become life threatening.
When I was treated with interferon and ribaviron in 2003 it almost put me in hospital and the ribaviron had to be reduced because my red blood cell count became dangerously low and I became so weak that I could not walk or work for over a year.
Compared to what I went through with peg interferon and riba, Harvoni was a walk in the park.
If you decide to treat then try your best to occupy your time with something other than worrying about every little ache and pain that occurs. Most people who rid themselves of chronic HCV and have cirrhosis experience what it is like to feel normal for the first time in a great many years. However some people do experience difficulties as I am sure you will read here on this forum and elsewhere.

In essence we all experience ridding ourselves of HCV with a DAA differently and some do have difficulties that cannot yet be adequately explained.
 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,909
  • Get tested, get treated, get cured, fight Hep c!
Re: Got my meds in hand but I’m afraid to take them
« Reply #2 on: July 09, 2018, 02:11:43 am »
My highest APF back in February 2008 was 32.4 your gastro is more expert on this than your GP. I had a friend who had HCC his AFP was over 500.

Since I was cured of hep c my AFP is only just slightly above normal

I was diagnosed with liver cirrhosis by liver biopsy in Jan 2008.

Most people tolerated Harvoni and the other DAA’s well with minimal side effects although some people sadly did have a difficult time with treatment that is not the common experience.

Are you seeing a hepatologist or gastroenterologist associated with a liver transplant center? Not saying you need a transplant just that this type of practice would best be able to track your treatment and guidance.

The currently recommended treatment per the AASLD for treatment naive genotype 1a with compensates cirrhosis is 12 weeks of Harvoni

https://www.hcvguidelines.org/treatment-naive/gt1a/compensated-cirrhosis

If your doctors are recommending go ahead with treatment then I recommend you follow their advice and start your treatment.

The majority of patients test not detected at week 4 on treatment. Really on treatment testing is primarily to confirm patient compliance.

As Eric said it seems that keeping properly hydrated seems to help with the most common symptom some mild headaches.

My advice is to follow your doctors advice and start treatment.
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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