Need help with long term Tx Effects

[elwye]

I'm looking for input that may lead to some help. I cleared 11 years ago after two tx with Intron/Ribo. At 54 I have no get-up. no motivation as if no adrenaline or testosterone along with the fatigue since tx. Lately getting depressed. I'm not complaining and don't regret tx, just want to improve quality of life. Also would like to know if anyone else in the same boat. Best of luck to all dealing with this disease

[Dee1956]

this is just one of the studies.  If you search for interferon reduces dopamine you can find others.

http://www.ncbi.nlm.nih.gov/pubmed/23657438

[Dee1956]

I read one of those NCBI studies that interferon can reduce dopamine levels, the feel good chemical in our brain.  I found an article of foods that can help to boost if as well as supplements.  I hope this helps someone

http://www.naturalhealthadvisory.com/daily/depression-and-anxiety/8-natural-dopamine-boosters-to-overcome-depression/

[Dee1956]

Hi Cowriter has some interesting information, there is a lot of research.
I was reminded that over year or so ago I had started probiotics and they seemed to help me within weeks, I am trying that again. I have also found articles about the gut and the brain.  How things going on in the stomach can affect our brain.  I will try anything to improve.  Thank you all for sharing, Dee

http://www.medhelp.org/user_journals/show/927787/What-Causes-Post-Treatment-Side-Effects-Page-1-of-2?personal_page_id=450

[otterwatcher]

I wonder if we had reported our state of mind during treatment truthfully instead of telling the medical personnel we were coping,we'd have had our meds reduced and not have suffered permanent damage? I feel they weren't on the ball an didn't ask the right questions and I was incapable of articulating anything from about week 11 of 24.Looking back I think the signs were there but I thought I was strong enough to cope. Maybe it's a personality type that led us to this point?

[otterwatcher]

we have to ensure all drug side effects are logged for future reference.
In the UK you can report drug side effects online on a website called Yellow Card-we can't rely on the medical profession reporting back for us.

[otterwatcher]

I think while 100% suffer cognitive problems whilst on treatment,it's a lower percentage of people with cognitive problems not resolving 2 years post treatment -not everybody has long term issues.

[smaug48]

Well, I wish I had, but it probably wouldn't have made a difference. I so wanted to get rid of this stupid virus that I downplayed the risks. Now I've got damaged goods and still have the stupid virus.

If someone in the forum at that time, or my doctor, had said "100% of those who take interferon suffer cognitive function loss", that would have made me think twice.

I think you're right, docs read the conclusion and nothing else.

[scottie24]

Yeah, and docs that give you the stuff never research that "Statement of Interest" issue as far as you do.

[hepc4Sandi]

I wonder if the same Sx post Tx occur with the 12 weeks vs 48 weeks Tx.

[smaug48]

I found this study from 2007:

"CONCLUSION:
Retreatment of prior non-responders with peginterferon and ribavirin was not associated with objective evidence of cognitive impairment as measured by a comprehensive battery of neuropsychological tests. The lack of cognitive impairment is reassuring and suggests that self-reported symptoms of cognitive dysfunction are more likely related to the systemic and psychiatric side effects of antiviral treatment rather than measurable changes in cognition"

That last sentence is such a bunch of BS. The neuropsychological tests were done at 0, 24, 48, and 72 weeks. I didn't notice cognitive impairment until well over a year after I finished treatment.

The first author listed is RJ Fontana. Buried at the bottom of a different study also listing RJ first as an author is a section titled "Statement of Interests":

"Financial relationships of the authors with Hoffmann-La Roche, Inc. (now Genentech), are as follows: R. J. Fontana was previously on the speaker’s bureau"

and

"R. J. Fontana: Consultant: Bristol-Myers Squibb; Consultant: Abbott Pharmaceuticals, Bayer/Siemens, GlaxoSmithKline"

[smaug48]

Thanks for the information.

I guess I'll have to start researching what progress is being made in treating "post interferon syndrome" (a term I saw recently). I saw in another thread somewhere that the Mayo Clinic is doing some research on PIS (can I call it that? It seems so appropriate).

In the meantime, Lumosity is one means to start rebuilding...

[Dee1956]

That is interesting, I wonder if that part of the brain controls sense of smell.  I remember  people having a heightened sense of smell during tx

[otterwatcher]

http://www.neurology.org/content/45/5/947.short                                     The pattern of cognitive and personality changes in patients receiving IFN-α is highly suggestive of frontal-subcortical brain dysfunction.                                          

[scottie24]

Read this re brain MRI:

http://www.ncbi.nlm.nih.gov/pubmed/23659574

"We conclude that treatment with IFN-α is associated with MRS-visible changes in glutamatergic metabolism. However, the changes seen differ from those reported in major depression, which suggests that the pathophysiology of IFN-induced depression may be distinct from that of major depression more generally."

[scottie24]

You know, I think it was from March, 2014, and I can't find it now.  Sent a link in an e-mail a month or so ago, but I somehow lost all my e-mails in that account prior to Dec 1.

However here's something else hot off the press:

"After 18 months, 42.5 % remained neurocognitively impaired, independent of viral clearance, severity of liver disease, and current depressive symptoms. Undetectable viral load was not associated with improvement 18 months after initiating treatment (p > 0.10). Results of the current study indicate that IFN/RBV treatment-emergent neurocognitive declines are significant, prevalent, and may persist long after treatment cessation."

http://www.ncbi.nlm.nih.gov/pubmed/25326107

Plus some other:

http://www.ncbi.nlm.nih.gov/pubmed/19441669

http://www.ncbi.nlm.nih.gov/pubmed/16251815

Just did a Pub Med search - the research is flying out at present.

[smaug48]

>>I read a recent Italian medical journal article that stated 100% of those who take interferon suffer cognitive function loss.

Can you provide a link or title, author, publication, etc.? I'd like to read it.

[Dee1956]

Hey there! Thanks so much for mentioning the Luminosity, I was thinking of trying that to help me.
I really appreciate you bringing up, I will be signing up on the 1st.
I was trying to figure out what kind of doctor I should go to to help me with the cognitive problems I am having.
Thanks again
Dee

[scottie24]

I've started with Luminosity for the brain stuff.  Heck, it's $46 or so for a year. At least it's something.  My psych PhD sister in law said if the various brain structures are not totally destroyed, they can regrow with use and "exercise."

Our primitive brain structures have been damaged - in our brain stems.  I read a recent Italian medical journal article that stated 100% of those who take interferon suffer cognitive function loss.  

[smaug48]

I'm in the same boat. I finished 92 weeks of tx in Oct 2009, didn't SVR. I feel like I've been on a rollercoaster for the past few years: brain fog, fatigue, depression, it comes and goes. I've been seeing an endo for the past 6 months, found that free testosterone was really low, but testosterone therapy hasn't really helped. Will do some other tests with the endo, but he's starting to think it's something else.

The depression *****, but the brain fog and memory issues scare the bejeezus out of me, I'm wondering if I should get a brain MRI.

smaug

[otterwatcher]

hi! yes I successfully treated 8 years ago and am suffering the same side effects as you.I was diagnosed with Post Interferon Syndrome 3 or 4 years ago when my liver consultant admitted that 4% of his patients are in the same boat.It seems to have a lot in common with Chronic Fatigue Syndrome.The fatigue and depression are the worst aren't they? Life in limbo...

[Dee1956]

So sorry I meant to say I will be back, I am sure others will be along.  Hang in there, Dee

[Dee1956]

I wanted to say that you are not alone.  There are many people who have had problems and continue to.  Maybe now that the push is to get away from interferon there will be some truth coming out about the long term effects.  
My best to you, Dee.

[hepc4Sandi]

Hi elwye, You might get more responses if you post this question to the Hepatitis C: Post Treatment Issues Forum. It seems like many of the people on this forum at the moment are newer to Tx and Sx. I have seen similar posts on that forum. Good luck.