what is post interferon syndrome

[gibsongal]

just saw otto post on the other thread.. was your treatment harder  for you than other people.?

[Bruin1903]

Thanks Otterwatcher....it is helpful to know that others have the same
experience though I wish us all better. I think you are in UK ?
Have there been anything which has been particularly helpful ?
All the best
Simon

[otterwatcher]

That's exactly how it is for me too.

[Bruin1903]

Hi Dee....Thank you very much that is so helpful. It feels, to me, that
PIS operates a a little like CFS. When I over exert it can have severe
payback and put me in bed for a couple of days. Is this a common experience.?.

[Dee1956]

Hi there, you can purchase DellimmuneV directly from the company, I will get information.
Also Amazon sells it
NADH really helped me when I first finished tx.
It helped a couple of other people on here.

[Dee1956]

Hi there!  Thanks so much for posting.  I am happy that you have been able to get an answer
I just started Cerefolin NAC, have hope it will help me
Good luck
Dee

[AgGal]

Hello Everybody!

My former nickname was Kittyface when I was active on this board 2005-2010,  Fortunately I cleared HCV in 2008 (almost killed me) but I, too, suffered from post interferon syndrome and last month was coincidentally dx with Systemic Mastocytosis which is an over proliferation of mast cells produced by the immune system.

Interestingly enough, the symptoms of Masto mimic the symptoms of post interferon syndrome; extreme fatigue, depression, apathy, and general malaise in the presence of normal CMP and CBC values.  It is primarily diagnosed by elevated tryptase levels which are not routinely ordered.

Mastocytosis is considered a rare "disease" with an unknown cause and no cure.  I think mine was caused by 25 years of HCV plus a generous helping of interferon and ribavarin.   Opiates have a major deleterious effect on the immune system and can trigger this disease as well.  For me, all the pieces of puzzle are beginning to come together.

The good news is I started LDN 1.5 mg and it has alleviated 99% of my symptoms in a very short time.   I wish everybody well and hope this info helps.

Cindy