POST RX TREATMENT - the real problems ?

[canada90210]

Post Rx Health
Hi every-one. I was on the Combo treatment for 12 weeks and was considered a 'non-responder'.
I'm 45 yr old male-fibrosis 2/4
Please don't say "I'm sorry it didn't work for you" , that is depressing and cold.
I had mild to moderate side effects from treatment.
Since stopping treatment I can FEEL (from pressure) my liver swelling on both sides. I have lost more weight since being OFF treatment than on. I have ALOT of muscle loss. I have skin pigmentation loss and my Platelet count/weight is DROPPING constantly. Please don't say ask the drs because I can't get any answers ......... they r too busy to explain to me what is going on. Does anyone know ?
Will weight/platelet count stabalize ?
Did RX trigger Autoimmune Hepatitis and is it reversable ?
Everyone-one talks about side-effects but do not match it to any relevant time information (ie: goes away, does not ???? )
What are the permant effects of side effects of treatment - noone told me !
WHY HIDE IT ?

[canada90210]

back to the original topic :

>> Post Rx Health  <<

Hi every-one. I was on the Combo treatment for 12 weeks and was considered a 'non-responder'.
I'm 45 yr old male-fibrosis 2/4
Please don't say "I'm sorry it didn't work for you" , that is depressing and cold.
I had mild to moderate side effects from treatment.
Since stopping treatment I can FEEL (from pressure) my liver swelling on both sides. I have lost more weight since being OFF treatment than on. I have ALOT of muscle loss. I have skin pigmentation loss and my Platelet count/weight is DROPPING constantly. Please don't say ask the drs because I can't get any answers ......... they r too busy to explain to me what is going on. Does anyone know ?
Will weight/platelet count stabalize ?
Did RX trigger Autoimmune Hepatitis and is it reversable ?
Everyone-one talks about side-effects but do not match it to any relevant time information (ie: goes away, does not ???? )
What are the permant effects of side effects of treatment - noone told me !
WHY HIDE IT ?

- Update,
I was treated by a hepatologist and when I get to much into questions he gets visibly annoyed and then says "it's not an exact science"
So now I still have Hep C and all this side effects I never had before. Am I crazy ?
Weight still dropping. They seem to want to test for everything but Autoimmune hepatitis. They say they don't don't know. It would seem logic to me to test for ALL the complications that post rx. could bring so they can "rule out" things at least. They look at me like I'm mentally ill. Now they say they are going "out of field" testing for Hemocromotosis ? Why not Autoimmune test ? I don't get it. They say I don't think it's ....... why not be sure ?
I don't think this stuff made me dumb, just sick !

[Kit07]

Hi Myown, welcome back to the board.  Below I posted two links to summaries from medical journals.  They both involve MRI brain scans and brain fog symptoms in people with hep c.  Perhaps show them to your doctor, at least so he/she will take you seriously about your symptoms and the possible link to the  "white matter" spots on your MRI.  One of my doctors, who subspecializes in geriatric psychiatry, says there is some controversy about this particular kind of white spot and whether it is a normal sign of aging.  He believes they are abnormal.  

This is how my MRI report reads: "There are multiple areas of periventricular and deep subcortical white matter intensity..."   I actually looked at the image at the neurologists's office. It showed a bunch of small scattered bright spots.  I saw the Big Dipper and the Milky Way.   My neurologist does not think it is typical small vessel disease, which is a possibility with this kind of spot.  He thinks it is somehow related to viral activity.   He doesn't  recommend any kind of drug therapy.  Before I started the hep c treatment  I had symptoms somthing like yours.  I was hypersensitive to noise and lights, and had some "electrical" whole body pain reactions.  My intuition is that those symptoms were related to the virus rather than the treatment.  Most of those symptoms subsided after I started tx and haven't come back, even though I relapsed.  I get mentally fatigued very easily though - to the point where it is hard to carry on a normal conversation.

As far as I can tell from reading, the actual cause of this particular type of MRI spot can't be determined from the images alone. They are just drops of water that give off a certain signal.  So please be aware that the virus is not eating your brain !!    I have read repeatedly that hep c is not directly "cytopathological" which means that it does not damage cells directly.  If the white spots in the MRI are from the virus, it might be an immune system reaction along the lines of inflammation or vasculitis.  

Beyond that,  I guess I shouldn't try to speculate too much.  It is hard for me not to be curious because my background is in biology, although I have no formal medical training.

So you people who are on tx, don't be alarmed or draw any conclusions from this.   In my experience,  the treatment drugs can really distort emotions and alter our ability to cope with stress. On the other hand,  some people with hep c are almost disabled by mental fatigue alone,  so their doctors should be made aware of  this research.  I am not sure how much to make of it...

Anyway I suppose all this will come out in the wash as How to Measure Brain Fog   #:-)
Thank you for your replies, Myown.  We are two data points in a sea of millions.

Be Well
Kit

These summaries are from the US Gov database of medical journals  www.pubmed.gov

Central nervous system changes in hepatitis C virus infection.
Eur J Gastroenterol Hepatol. 2006 Apr;18(4):333-8.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16538103&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Central nervous system involvement in hepatitis C virus cryoglobulinemia vasculitis: a multicenter case-control study using magnetic resonance imaging and neuropsychological tests.
J Rheumatol. 2005 Mar;32(3):484-8

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15742440&ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

[mikesimon]

I stopped treatment after 73 weeks in June 2004 and had treated twice before for 52 and 53 weeks respectively but with suboptimal doses. I wrecked my bike in June 2005 and had brain MRIs a few days and weeks later. The only abnormality observed was attributed to the head trauma from the accident. They were worried about cognitive impairment resulting from the head trauma so I assume they studied the images very carefully. I think I am okay cognitively but I haven't taken any tests since 3 months after the accident - they said I was fine then - whatever that means. Mike

[Myown]

I just had a brain MRI. For over a year I get static noise in my right ear everytime there is loud noise such as dog barking, music headphones etc. I was fearful I had an acoustic neuroma because I had read some with the acoustic neuroma also experience this. But then I noticed that if I would have get nervous the side of my head would feel weird. So I mentioned to my husband that it may be something with my blood vessels in my brain becasue its not always noise induced , but seems to appear if I am upset also.

I just received the report. No brain mass, thank God, but it does say "there are a few tiny nonspecific punctate subcortical/perventricular white matter foci which may reflect minimal small vessel disease."

My PCP didn't think too much of it and its probably nothing, but it is one BIG  pain in the neck to have this static in my ear. I guess I should go to a neurologist or something, but really what can they do? But anyhow, I totally believe this is hep c related. No one will listen to me when I say that. BTW this all started BEFORE I started tx.

I'm going away for a while tomorrow so incase you reply, I don't want you to think I am ignoring you.

If you have any advice, let me know. Thanks

[Tallahassee]

Very interesting post.

I had an MRI in 2000 for migraine related issues, because my occasional migraines/ headaches.
Fortunately, this MRI was completely normal. But in 2000 I was only 29-30 years old.

In 1995-96 I went through 48 weeks of 3 times per week interferon +riba clinical trial.  I didn't respond.  After that I was on Infergen on & off.

Recently I completed 98+ weeks of high dose daily Infergen + ~1200 riba (but by my weight I should be on 1000 mg of riba).  Now I'm 5 weeks post treatment, feel significantly better, people at work complement me that I look fresh and rested, spring is good for me, and such (I did not disclose at work my treatment or decease).

But definitely this time I feel that my attention is greatly diminished, I need to go through creative switch between projects to keep my productivity and to keep my focus.  Never in my life I had problems with focus and concentration.  But seems like my cognitive ability is slowly improving.

My vision is not improving though, so I have to visit a Dr.
Well, anyway, now I'm curios and will ask my primary physician for another MRI.

All the best for everybody!!!

[Kit07]

Hi My.  Interesting results - somewhat similar to mine.  I'll post a longer response to you in this thread tomorrow.  

btw I got my email addy wrong in my first post.  I am not as cognitively impaired as that post might suggest, honest  :-)  I posted the addy in case anyone wants to mention neuro issues but doesn't wan't to post them to the whole world.  

Kit
kjohyayhoo  at yahoo  dot com