Hepatitis C: Post Treatment Issues Community
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Avatar universal

Interferon Syndrome

I want to know if there is now a Diagnoses of Interferon Syndrome
I not only went through 3 rounds of treatment for Hep C I had every possible side effect there is and wrote a few chapters of more sides, my Dr was a great man and did everything to help me but now almost 20 years later I am still suffering from almost everything I was during treatment and then some
I have more  diagnoses since treatment but is there a sound diagnoses of "Interferon Syndrome"
29 Responses
2059648 tn?1439766665
After reading your post and others like your I wonder if your not trying to put the wrong diagnoses on this.   I'm no doctor but sense there isn't a concrete diagnoses of "Post Interferon Syndrome" What do medical professionals call it.   There is a diagnosis of "substance/medication-depressive disorder". It does seem to be exactly what everyone is calling "Post Interferon Syndrome".  

2059648 tn?1439766665
747988 tn?1396536878
I was diagnosed with Post Interferon Syndrome about 4 years ago,5 years post treatment.I have Chronic Fatigue Syndrome type symptoms plus nerve damage and fibromyalgia.I had no liver damage prior to successful treatment with interferon/ribavirin and led a full and active life. I am not depressed. My liver consultant told me that approximately 4% of his patients were left with similar symptoms.
2059648 tn?1439766665
What is the code for Post Interferon Syndrome?   Are you disabled based on
"Post Interferon Syndrome" diagnoses?
2059648 tn?1439766665
I'm a little confused by your answer.   It isn't known what causes " Chronic
Fatique Syndrome".   Also, I don't believe that "Post Interferon Syndrome" is an actual diagnoses.    If this is to be a post interferon syndrome it has to be
medication "interferon" produced and you can have any of those symptoms before treatment.   Otherwise, you were highly productive healthy person before interferon.   Which would be "Medication Induced Depressive Disorder.


2059648 tn?1439766665
correction:  If this is to be a post interferon syndrome it has to be medication "interferon" produced and you CAN'T have any of those symptoms before
747988 tn?1396536878
I had none of these symptoms pre tx,,I was active,fit,busy,had a great social life, I started to feel better post tx then approx. 3 months later started to go backwards. The chronic fatigue syndrome is part of the PIS but I have other issues that started at the same time,some have developed since.4 years post tx the liver consultant gave me a dx of PIS after hosts of tests to eliminate other conditions.He told me 4% of his patients had the same side effects .
I am on full disability for PIS.
I don't understand your question re the code.

I am NOT depressed!
2059648 tn?1439766665
What medication do you take for "Post Interfereon Syndrome".
747988 tn?1396536878
hi,I take dihydrocodeine for pain and nitrazepam for muscle spasms and sleep.I tried Lyrica and gabapentin but didn't get on with either.The liver consultant said they can only treat the symptoms as they arise . There is nothing my GP can prescribe for the overwhelming  fatigue on the NHS.I also use eye drops/eye lube,artificial saliva for dry eyes and mouth and take antihistamines for rashes.I cut gluten and dairy from my diet and eat only healthy food.I take a multivitamin/mineral and vitamin D supplement,I tried other supplements but they were a waste of money.Hope that's helpful.
Avatar universal
I know your diagnoses or guess's is not correct I run over 25  support groups with people dealing with 20 years out and all of us have the same type of symptoms the only thing tieing us together is Interferon and Riba
I do not believe it has anything to do with depression at all
I do know a lot of us that suffer with multiple dx's have some depression but that's expected, I have MS as well and the most used drug to treat that is also Interferon based with the same symptoms so there is most certainly a tie in between all of us
2059648 tn?1439766665
I don't diagnose people.  I'm not a doctor.  Discussions are about issues
people have after Hepatitis C treatment.  Since I don't experience the drastic interferon outcome of Hepatitis C treatment….. its hard to know exactly what the issues are.   Apparently, they very from one person to the next.

What I do see about "Post Interferon Treatment"  is it very much like
"Post Chemotherapy".  Both have many of the nasty outcomes to some of
those receiving these treatments.  Some people will be left with illness just due to the chemotherapy.   I don't doubt interferon can leave permanent
long term illness.   But this is true with many serious therapy drugs.

Some people aren't effected at all.  I think this is why doctors fail to
acknowledge the effects of interferon.  Or they just refuse to say.  Like
chemotherapy for cancer and other illness…. there is always a chance
issues can be from the exact drug that treated your decease or illness.

I don't think any can predict how these drugs will effect people but with chemotherapy people don't seem to be as angry.  I'm truly sorry that
this has happened to people who honestly thought this would cure the
problem and move on.  

I don't mean to insult those who have experienced this.  I do believe that
there has to be depression due to results like PIS.   I'm only suggesting
that depression might be related to some of these symptoms.    

Avatar universal
I so relate to what you write on this forum. For me also it was 3 months post treatment that I started to get worse. I feel like a beginner in my battle for health post interferon so do not have much experience to share except that whatever I have operates like Chronic Fatigue Syndrome and I always suffer after exertion. Thank you Otterwatcher for keeping posting on this site. It has helped me not feel crazy. I have suffered from depression before but what is going on IS NOT Depression ! A different beast altogether.
747988 tn?1396536878
I agree,I am treating this as a Post Viral Fatigue Syndrome-I think the main problem is that our natural interferons are thrown out of kilter making our bodies feel as if they are fighting a virus all of the time,even after the virus has been eradicated. Were you very unwell in the acute phase of hep C? I've read that you are far more likely to be affected by Post Viral Fatigue Syndrome if you were and I was very sick for a year when I was first infected although I recovered and was active and fit when I started treatment 17years later.
This is not depression,this is interferon.
Avatar universal
Yes my experience the same. I was quite ill with Hepatitis though when diagnosed it was in historic times...non A nonB . I was active and relatively
fit when I treated and have never been well since commencing interferon.
However, like you, I seemed to get worse after the 3 month period just as
I thought I would be getting better. Currently am doing diet...no wheat, no dairy, very little red meat. Juicing lots of healthy things and just started chinese herbs and acupuncture with someone in south london who has had a long experience working with Hep C...I do rate him but he is about 140 miles from me so quite inconvenient.
747988 tn?1396536878
I'm an ex South Londoner! Are you seeing John Tindall? I used to see him when I lived there but found the herb regime hard work! I loved the free acupuncture at the Gateway clinic,that's the only thing I miss about living there! Interesting that you were very ill during tha acute phase of hep c-yes I was diagnosed with non A non B back in the 80's-we have much in common!
Avatar universal
Yes am seeing John ! He has given me Herbs in powder form so that bit is
not too taxing. I find him impressive as he has certainly walked the walk in
terms of how he approaches his practice. I would not care to live in that part of
town either !...Did you find the herb regime hard because of boiling them up etc. ? A lot in common indeed....good to meet you Otterwatcher.
747988 tn?1396536878
Haha! Small world indeed. The boiling herbs for hours thing yes all too much for me! The acupuncture was wonderful though.Good to meet you also.
Avatar universal
I did not mean to sound so sniffy about south london...just that since interferon
I have become  allergic to cities and the only good thing about them is to see something beautiful and then leave......Have to say am feeling a bit desperate regarding recovering from treatment....it is so very helpful to have this medium
and very much appreciate you posting....I guess I will have to learn pacing ...not a skill I am good at....Very best to you and all on the road.
747988 tn?1396536878
I haven't been back to London since I left 10 years ago,can't stand cities either,am lucky to be in rural mid Wales now.
Pacing is the thing-it's so hard to get the hang of,it took me 3 or 4 years to actually relinquish all household duties in favour of feeling better.I'm sure the healthy diet also helps to a degree,food is the best medicine or the worst poison depending on your choices.Sorry I don't have anything more positive to offer! Let me know how you get on with John's herbs...
Avatar universal
Thanks Otterwatcher...It is all very frustrating but have to believe there is something that can be done. Will let you know if the Herbs work. All the best.
Avatar universal
"There is a diagnosis of "substance/medication-depressive disorder". It does seem to be exactly what everyone is calling "Post Interferon Syndrome"."

Not even close.  I don't htink you understand or "get" the extent and scope of the side effects.  To the extent that depression occurs, it is simply one small piece of a much bigger thing.

I have received a diagnosis of Post-Interferon Syndrome from the hepatologist that treated me.  He acknoweldged that it was not a recognized diagnosis, but he had apparently taken the time to read forums such as this one and recognized that such a thing existed.
Avatar universal

1798872 tn?1346164585
TO ALL; The Mayo Clinic as of this year has a DX;Post Interferon Syndrome yes they do ,you have to be smart and do your own research and not depend on someone else to answer.....Yes,Yes there is a DX for all of us..:)
1798872 tn?1346164585
I treated in 200o w/Interferon and Ribv..Before treatment i was 202 pounds and a 32 waist and coild bench press well over 300 pounds.And never even caught a cold ok? Starting treatment i felt kind of sick but wrote it off..lost 45 pounds could not eat,nausea,diahhrea vominting....OK after treatment could not work and work out any more..stayed on the health kick and threw myself into work..Never did i once feel 'good' after treatment..Then in 2002 random blood work and guess what ..hep. C is back..Put off all treatment until i felt like they 'Got it right' in 2012 i felt like death warmed over. Done the Pegasyst and ribv.. then all Hell broke loose.Felt like i died.Doc. ran tests....Now i have..Chronic Pancreatitis..Chronic Bron...SLE Lupus...RA..Fibro..Heart Attack..CFS....Now then the reason i said all of this is think about it..post treatment i was in great shape never sick...now i can barely wipe my own ***....Could this be from treatment.....Come on you can't be that Supportive of your Doctor and Drug Company.....Yes life ***** after Interferon i am living proof...
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