long term affects of interferon rib. tx

[tess1015]

my husband started tx in 2001 and has had a total of three txs.  This last one created many issues for him.  I am wondering if there are any neurological issues asssociated such as poor memory

[rambleon40]

OH is right about a good doctor.  First step might be finding a doctor that understands about post-interferon syndrome.  Too many are in the dark about frequency and severity of interferon side effects.    

SSDI benefits can only go back one year from date of application, that's why i state "don't dally."    One thinks they will get better so doesn't apply .....  then big period of eligibility goes by.  

[orphanedhawk]

Getting disability can be a long process. He is likely to be denied on the first try, then approved after appealing. They do pay retroactively.
Most important is his having a letter from his doctor saying he is disabled.
This will help enormously.

You say he is going through many experimental treatments.
Is this for his hep C ?
The new all oral meds currently in trial are having great success in stopping the virus including those with hep cirrhosis. Sadly no other 'experimental treatments' will work getting rid of the virus

I did not understand from your original post that he has cirrhosis and has not gotten rid of the hep C.
A side effect of cirrhosis can be a condition known as hepatic encephalopathy,( HE)  which is caused from too much ammonia in his system.
He should have his ammonia levels checked with a lab. He should not eat any red meat, as this can accelerate ammonia levels.
There are simple meds, that can help deal with HE.
This is important. HE can cause delirium and even comma.
The medicine, lactulose, is a non-digestible liquid that binds the ammonia and it drops out of the body with the feces.
Also if he has cirrhosis, he needs to have his salt intake restricted. Read all labels and avoid anything with sodium.

Good luck going forward.

[tess1015]

Thank you so much for your comments!  They were very validating!  I have been thinking that he needed to apply for SSDI because of his inablitly to really stay focused and keep a job.  He gets tired so easily, forgets conversations and feels defensive when I suggest this.  He is working on a job in another state and really wants to do better.  Learning new things is tiring and he spends more getting work that earning money.  If SS is open to this that is awesome.  We are convinced he got it in the service when he was in Germany.  He had a lot dental work and worked in the hospitals there.  He is going through many experimental treatments and now is in the first stages of cirhosis.  

[rambleon40]

PS - If your husband is pre-retirement age and having difficulty and not working, apply for SSDI ASAP.  Don't dally on that - get the application filed.  I was disabled for at least three years and never even thought to apply for it - when your brain is addled you don't make good decisions.  Could use the $ now.  Social security lawyers have told me that the SSDI ALJs are familiar with post-interferon syndrome, and disability is not too hard to get.

Good luck!

[rambleon40]

I believe from my own experience (which is only my own experience) that the body actually attacks the brain post-treatment, in some folks.  

Autoimmune disorder - the treated body often attacks the skin (psoriasis), the joints / bones  / muscles (arthritis and myalgia), the thyroid, the gall bladder, the peripheral nerves, the liver - what surprise the brain?   I think the brain becomes inflamed.  

I have read one neurologist (Blaylock - who is / was selling something) say that it takes two or three years to recover.  It did me.  I recovered 90 - 95% or so.  Can no longer picture strings of numbers in my head like i used to.  

While Blaylock was selling something he was also only bit of writing I ever saw that hit the issue right on.  And of course the pharmas are selling something when they write their studies.

The acute syndrome is a most unsettling loss of identity / self, ability to self-organize, and zest.   The mild syndrome may go unnoticed - I suspect a lot more people have it than realize - they change ever so little after treatment.    The onset is 45 - 90 days post-treatment, so causal link is often overlooked.

I think an anti-inflammtory diet helps.  Time helps.  Love helps.  A good ritualistic and caring reiki practitioner helps, one who will lay hands on the head and focus good universal energy into there.  If you went to reiki and got level 1 cert, you could do it.     It's a light loving touch and good intent.

[orphanedhawk]

Sadly there is little research about long term side effects to interferon treatment.
It certainly is possible that his issues could be related to his three treatments.

You could try sending a private message to rambleon one of our members interested in this issue.