what is post interferon syndrome

[gibsongal]

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

[Sammi_Jane]

Today if the first I ever heard of PIS.  I had 12 months of Interferon Alpha in 1996 and 7 months of Interferon with Ribavirin in about 1999.  Had to stop the combination therapy as I was borderline Rheumatoid and thyroid levels were dodgy.  I found out treatment had triggered Asthma and I was later diagnosed with Fibromyalgia and Chronic Fatigue Syndrome.  I have recently noticed my finger joints swelling and deforming and am waiting to see a specialist.  In the last few months I have a had a terrible cough that won't go away and when I saw my doctor yesterday he sent me straight for a chest x-ray and is worried it's  more than a chest infection and I found evidence on-line of Interferon causing lung damage?  The thought of this therapy causing ongoing damage had never occurred to me, I feel like I am being sucked into yet another health nightmare!

[Dee1956]

Hi just saw this. I have heard of others having lung problems. So sorry to hear of yours. I think it was HondaPatches that had to start using inhalers, nebulizer in order to breathe.

[redhorse63]

i am 12 months post hep c treatment and still feel like crap

[otterwatcher]

Hi Simon,apart ftom pacing and eating healthy food I haven't found anything that helps. I think Frank had a result being prescribed dexamphetamine but he's in the States-can't see it happening here somehow! I'm not entirely sure it would help anyway as it would be too easy to overdo things and end up in bed for a week or so again. I was diagnosed with Post Viral Fatigue Syndrome and fibromyalgia by my GP a year after treatment prior to the liver consultant diagnosing PIS 3 years later,If you find anything that helps with this overwhelming fatigue please let me know!

[Dee1956]

To explain, I was searching for  Post Interferon Syndrome.  In the past all  I would find was HCV and interferon.
I guess, now that it is not being used as much for HCV I am finding interferon and skin cancer and long term side effects
I don't know what dose they took compared to those of us who treated HCV but I am hopeful this information will help someone.
I found this article about rare side effects and wonder what else there might be
I think our doctors knew more than they let on.  After finishing a trial in 2009; my hepatologist freaked out over a bent finger I had.  He seemed to think Interferon had done it.  I had to explain it was a torn tendon.  I always wondered about his reaction.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913821/

[Dee1956]

Hi just in case here is the information.  While it is not new I think it is believable and might point you in the right direction.
Maybe there are some Oncologists out there that know how interferon affected some people and they can help.  If I find anything I will come back. I think this is the place that DWBH was talking about or it is close....I hope :)

http://www.melanoma.org/comment/53809#comment-53809

[Dee1956]

Hi Bruin, yes I believe that for people who have PIS what you are experiencing is the norm. I know I will be good for a day maybe two, then I am exhausted. I got the Dellimune V off of Amazon. You can check as prices constantly change. I have noticed improvement like Frank. Because I have been taking probiotics for a while my results were not as strong as Frank's but still improving. Also I just looked up post inferon Syndrome and found people with melanoma discussing long term side effects and how their docs were helping them. Now I wonder why HCV docs deny any problems and won't help or even admit there is a long term effect. On the one hand they agree there are sx from tx but deny anything long term could happen.  I thank God I don't have these coma/sleep attacks I have seen others post about. I am going to look into some more.