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Author Topic: Would like to go back on LDN  (Read 616 times)

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Offline Lukey

  • Member
  • Posts: 318
  • Let Thy Food Be Thy Medicine
Would like to go back on LDN
« on: September 02, 2019, 05:02:27 pm »
Hi,

I got my SVR48 recently.

I'd like to go back on LDN again [low dose naltrexone] for a trial, which is an immune modulator but some lady who was an RN thinks it might cause a relapse, but I have a hard time believing that. My gastro MD and his FNP didn't mind of I had stayed on LDN when I took Vosevi for 12 weeks in 2018, and I'm willing to bet they will not now either, but this ex RN put a damper on that idea. I stopped LDN when I went on Vosevi and never went back on it. This is what she told me :

" I would definitely ask your liver dr. Hepatitis C is so immune driven & tamping down immune system could
be a prob. In my career as an RN, I sold Intron-A which back then was the only treatment. It
upregulated the immune system to attack Hep C.
It can hide & cause relapse.
I would talk to dr. Congrats on good results of tx!"

I don't think she knows what she's talking about. She acts as if Hep C is still living inside me and is ready to come out again and make me sick again.
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: Would like to go back on LDN
« Reply #1 on: September 02, 2019, 05:17:22 pm »
I agree with you Lukey. I don't think that RN is familiar with LDN... or really even with the nature of the new Hep C drugs if she thinks something you do can cause "relapse" when you are SVR48. It sounds to me like she was just saying whatever might dissuade you from resuming LDN, which she is probably unfamiliar with. (I have used LDN in past but am not now.)

kim
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,500
  • Get tested, get treated, get cured, fight Hep c!
Re: Would like to go back on LDN
« Reply #2 on: September 02, 2019, 07:39:14 pm »
Believe your doctors advice. If they say it’s ok go with that. They said it was ok I’m sure you are correct they would still say the same.

Many medical people don't know much about hep c especially if they don’t keep up. Sounds like this RN is a prime example
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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