I've had benzo + other withdrawl .... this is DEFINETELY worse !

Hep C tx is a piece of cake compared to Benzo withdrawal--
I have experience with both- it was in rehab for Benzo withdrawal the doc's
discovered the Hep C--
Tread lightly with benzo's

I'm post tx over 5yrs and a responder.Had type 1b and treated with Rebetron for 13 months.After recovering from tx I started to feel better but now have bouts of fatigue,muscle/joint pain like before tx.I'm soooo glad my tests are neg. but hoped to feel much better.I thought I was crazy for having symptoms post tx.Thanks to all for the great info on this web sight - it really helps.

The reason they act like they don't know is because they don't know. And when doctor's don't know, they often act kind of funny and sometimes turn it all onto you.

Since you've only treated for 12 weeks my guess is that your side effects will fade with time. Not sure how long it's been since you've stopped the drugs, but def give it 4-6 months before jumping to any conclusions. I had a number of post treatment problems, including significant skin issues that have most cleared up but it took close to a year after stopping treatment.

Don't know much about autoimmune Hep or it's diagnosis, but again, the one thing that irritates doctors more than not knowing the answer is when a patient suggests an answer. So if you've used up your good will with the current docs maybe time to move in -- first choice is  to a hepatologist who has treated lots of patients but just be warned that many of them aren't that keen to deal with problems after treatment.

As stated, Dr. Time is probably your best consultation.

All the best,

-- Jim

To Whom It May Concern,

(written for head clinical nurse)


I appreciate your help and patience with me. I realize and hope I hope you remember you are saving lives everyday and some people just don't get better with this current treatment. I guess in my case my fear and anger is going toward you because it seems no-one else wants to listen or care. It is OK that this current treatment did not work for me. I look forward to future developments in therapy.
I do not communicate well with delicate issues especially serious ones also. I have some “ideas” or input about what is going on with me and would like to share them with you. I realize that YOU ARE NOT A/THE DOCTOR (s)!
Before treatment had started I have stated several times about iron levels being high.
I was told by the general MD in Alcohol Rehab (Jan 2006) that my iron level was very high.
More recently, I was told by the Dr ***** the high iron was being "looked at".
I have been concerned about taking any supplements because some energy drinks made me VERY fatigued and have mentioned that also.
My only regret in treatment was that my second injection was 2 days late (pharmacy).
Now after treatment I have white patches on my skin, continued weight loss, muscle aches, joint pains,
feeling of EXTREME hunger (even after eating plenty), and very bad muscle cramps.
Now it seems my iron "problem" is being "looked at" 14 months later.
I do NOT understand why I am not being tested for ALL the complications of post rx treatment.
This "call if it gets worse" is at WORSE.
Now it is suspected maybe hemocromotosis  (Iron ?)
I would ask I be screened for Autoimmune Hepatitis and a full blood count.
I know it is not a simple question as to what is wrong but I do not understand why all the "possibilities" are not being ruled out !
I am told that liver problems are serious yet it is taking one test or complaint or (nervous phone call) to go each step to determine what ISN'T the cause.
I am concerned if I get much sicker the cause will be determined and then I feel it will be to late to do anything about it !
I was not this sick prior to treatment and this was during an active alcohol addiction. I realize the lab results say different.
I know in my file there are mental issues, however they were related to extreme untreated depression and I no longer have the intensity of those effects.
My  physical health at this time in no way reflects “improved” anything.
Am I just going to get sicker now ?
I do not drink alcohol (@ least 1 yr) and  have taken the time to cook and eat properly some time ago. I bike ride and have several hobbies.
I am not dwelling on this but seemed to get fatigued or cramped up for no reason. (my hands are cramping when I type).

It would seem that it would be better for myself to due all the tests possible now instead of “after the fact”.

What you are describing is not normal - but it does happen
Links ^^^^

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 !

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

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

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

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!!!

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  

Hi kit,
I will check out your post around the 4th of July or so when I get back.

Thanks.

well i hope that someone in our group is maintaining information.  we could be our own study.   and look at the numbers, and after tx, svr and lingering side effects. and hopefully whatever resolves the residual sides.

i have been on benzodiazepin serax 15 mg. and was taking one nightly, very seldom 2, lately i skip nights in an effort to fall asleep unassisted, and wonder if my attempts to stop could cause me problems, i know with ADs we need to wean off, is it the same for low-dose benzo? (i prob should know this and tried to look the other day).  beside the cognitive diff. if i can't sleep at night, will make hard for me to get up to work a regular 8 hr. day. i do contract work now and make own schedule, but really hope to be employed through  temp agency specific to my field.

bug - on this PBS program - nutrition called HOPE system books cds and the like,  they said when eating yogurt for beneficial aspects, don't use yogurt with sugar in it, eat the unsweetened.  sugar feeds candidas. but about the vinegar, it should be from health food store, but regular store brand works just as well.- seriously the benefit was very quick.

good day to all

i am 10 months post tx of 45 weeks. i have bad short term memory problems and fatigue blamed on depression.

i did svr but am wondering if it was worth 45 weeks of sides and maybe a lifetime of lingering sides.

i am surprised you have these side after only 12 weeks of tx.
do not let people tell you "well, i have memory problems also, must be old age". bullpeppers.

i advise only those who are in immediate need of tx to rush into this poison with so many good drugs comming up to being aproved. remember the dr. suggesting tx is not the one who has to live with it.

these new drugs may include peg but for a much shorter period and much better chance of svr.

I don't know if this helps but just last week when I saw my heptologist we discussed my stopping ( July12, last shot day) and he said to expect sxs for up to three months afterwards. I'm wondering whether things will be easier for me because of slowly lessening my dosage. Now, I'm only doing 1/5 of the regular pegasys dosage, half of what I was doing for all but the first 5 weeks of tx.
   I've been staying out of the sun except for my feet because I prefer flip-flops. The tops of my feet look like jerky w/o the grease. I'm now trying to remember to slather sunscreen on them.
  There is no way I could walk 5 miles now. Maybe in a few months?
   Take care.           OH

i am 5 weeks post. I never got on any anti-depressants during treatment, however, today i am going to dr to get something to help take edge off. I am constantly irritated, everyday life was NEVER easy but i as a single mother have been able to maintain, even through tx. But lately, I have been a B*t*h!!
On a good note, my hip pain has subsided, but the abilty to put sentences together comes and goes. Some days at work i can sit at my desk and successfully be able to focus on tasks and get much work done, other days its the complete opposite. While still on tx, I looked forward to playing with kids, but this weekend for example i was exhausted, irritated, and snappy with them. I dont know if this has to do with the whole WAITING AND WATCHING gsme, but I am hoping that when they tell me i am SVR this will go away.

I am also glad i gave it a try, Just wish I was more informed about those who are rapid responders stopping tx at week 24.I wish there wre more studies out there that related to people like me. With more exposure out there regarding this disease, there is bound to be more people that are like me.coming out of the woodwork. With everyone's testimonies regarding post tx sx, WHERE ARE THE STUDIES???

I ended 60 weeks of treatment about 15 months ago.  I am mentally fatigued, physically weak, lethargic, have poor concentration, sometimes to the point of dizziness.  Short term memory problems you betcha.  Joint/bone/muscle pain from sunrise to sunset, though part of that it caused by unrelated progressive spinal curvature.  No appetite.  Eating is a chore so my some of my blood nutrition numbers have become  low.  Especially iron.  Ferritin (iron storage molecules) is around 15 which is  below normal. I will ask for test of  B-vitamins, calcium, potassium,electrolytes,  next time i see the doc. What else to test for?

Because I still have hep c, it is reasonable to think that these lingering sympyoms/sides might be from that. I am inclined to attribute these lasting problems  to  the severity of the treatment drugs or both the drugs and the diisease.  You cain't win fer losing.  My main cocktail was interferon, ribavirin and neupogen.    How long will these aches and pains and brain drains  last?     At the end of my treatment a funky neuropsychiatric memory evaluation (ordered by Social Security as part of my SSDisability Claim.)   revealed quantifiable objective evidence of  abnormal visual memory. I was wickedly fatigued and 40 pound lighter and measureably malnourished by that point in tx.  But litsen up you current tx'ers -  be cheered!  Things have gotten better   For the benefit of you poor folks on tx right now (and  reading all this scary stuff) I should say that my anxiety and darkest depression  began clearing  right away after the last shot.  WHEW!  I could actually witness the unfolding springtime and nature that had held my heart together through so many long cold months.  Did I mention I'm a nature gal?  My appetite came back too right away and my sleep improved. I  have  taken 20 mg ambien eveynight for 5+ years because I have a brain that will not go to sleep on it's own nor with melatonin  or chamomile tea or other OTC preparation.  I have some luck with Xanax and such, but the sleep is always too short.   :-)  

Anyway the point of this blather is to add my two bits to the dialougue about pos-tx symptoms, some of which are neurological because they involve cognitive processes.  Near the end of tx I  found an excellent neurologist in this small univerity town who was willing to order an MRI brain scan for me.  The results were abnormal.  There are multiple areas of stucturally  pathologies that show up in the scan becasue they contain water - meaning dead cells.  They spot are "areas of T2 hyperintensity"  Leukoaraiosis is the technical term.   A second MRI a few weeks ago showed that the white matter areas were still there, but stable - unchanged.  So WHEW for that too!  The pathologist report says the T2 areas are consitent with either demyelination disease (MS)  or ischemic changes suggestive of early onset dementia. Yahoo! The question that lies before me now is were the abnormalities causued by the treatment, the HCV, or some series of unrealted cerebral vascular events (note: the spots are not from strokes or tumors. ) A search of the medical abstracts turns up evidence for all those possibilities.  I have four specialists whose turfs overlap at this point in my personal spacetime medical continuum.  Each has a different opinion of the cause of the brain damage.  None of them encourages me to retereat....  

So my question to you good people?  Has anyone had a MRI brain scan, either before during or after hep c tx?  I would be very interested in the results!  I will share my report with you so we can compare notes.  Brain MRI are spendy and not that easy to get ordered, so if you think you want one you might have to come up with some reason other than fear of toxic effects of hep c treatments.  I think a doc might balk at that.  People who get migraines sometimes get MRI's ordered...  Just a thought...

Cheers all you strugglers, and Ladybug I am wishing you well tonight  ((bug))

Kit
oops heres my addy if anyone want to chat about this.  I have done a fair bit of research in the med abstracts.
kjohyahoo   at  yahoo   dot   com

that is some interesting stuff about the brain MRI.  i did have one years ago MRI not brain or was that other way around... what i mean is, i was given MRI ordered by a neurologist because i was having fainting spells he had ordered to rule out ms and other things.  i was informed it was normal, and that i did have a brain.
rose

Wow, pretty interesting stuff.
"Yahoo!" You're funny, and poetic, you little nature lover. I have a brain that will not go to sleep until it's time to get up. Maybe that accounts for the naps in the car!
You txed a really long time, it really stinks that you didn't clear. I would love to have an MRI but really don't want to know what's on it.
I'm amazed you've gotten so much info, and there's so much out there that we don't know going into tx.
Your story puts my little problems in perspective. You sound twice as smart as me to begin with though so I'm glad my tx was shorter.
Well, I'm going to bed. I quit taking ambien because I was afraid it caused me more cognitive problems. I used to take clonazepam at night to help me relax to sleep, but my hip pain wakes me anyhow. Now I just try reading, or hanging out on the forum at 2 or 3 in the morning. Then I jeopardize my life and others while driving home from work fatigued.
Thanks for the input, I'll contact you soon.
Take care,
Bug

I'm really going to look into the vinegar thing. It sounds like a simple cheap cure. And other than the sodium level, doesn't sound like it can hurt, even if if doesn't work.
This is amazing to me to hear so many responses. BTW, I put on sunscreen everyday now, something I've never done before tx.
I've seen my PCP twice since stopping tx, once for the uncontrollable itch, hip pain, and to get a 4 week post pcr. He gave me a steroid shot that cured the itching, and thought the hip/leg pain was maybe another hernia. (I've had two)
My immune system is really not doing it's job and it took me two weeks to recover from a "virus" that turned into bronchitis. I went to an urgent care center on a Saturday for that. Since then I've started drinking dannon "immunity" a 3.3oz bottle of liquid yogurt with the active cultures that restore immunity in your digestive tract. I stopped after I felt better, and Friday started getting a sore throat and cough again. Went and got some more yogurt.
Went back to the PCP last Thurs. to ask for another pcr and to follow up on the hip pain. Now he's referred me to an ortho dr to rule out DJD or bursitis.
My hep clinic has had nothing to do with me since 2nd week in March, at my last visit. They did call me last week to reschedule the June 26 appt as the PA will be out of town. I said don't bother with rescheduling. I only saw her twice on tx and one of those appts was rescheduled also.
I have a lot of energy I think, but it comes in bursts. As far as the brain function, some days I can wake up and realize as I'm trying to get ready for work that it's going to be a bad day. I can barely get out of the house, it takes so long to get ready due to disorganization.
I told my daughter and husband about the sadness I'm experiencing and they were wonderful. They reminded me that I had just gone thru tx and that it would take some time to feel better. Of course they notice the cognitive changes but keep reassuring me it will get better. I've rechecked my spelling on this about 20 times already and fixed the many errors. At least I have the ability to see my errors and fix them most of the time. My typing is worse than the spelling, so a lot is h
just typo errors.
Rose, I hope you start feeling better soon. I think there's hope for all of us. My problems aren't debilitating, just irritating. Ask your PCP for the 12 week PCR. If I'm not clear, no way am I going back on tx yet. I'm sure that to the ones who txed longer, I sound like a whiner. But, I quit because of the same problems I'm talking about now. I fear the toxicity of the meds, but I'm still glad I gave it a try.
Hugs,
Bug

thank you for sharing...

thanks for the encouragement cruel.  i don't think i have opportunity for a different or better hepatologist at this point, and when the docs see me, it seems like all give the the "she really needs to see a psychiatrist" smirk and dismiss me.  really i do feel they do.  you are right they are probably putting all their efforts into getting "new" people into treatment.  they did do such a good job of that, get them in, get them on, montior, but as i stopped 3 weeks early i really feel abandoned by them.  i get no followup with GI nurse, my regular PCP is who i see now. and i am enviouis that bug gets a 12 week post test (and others) and i don't  - why? -- i wonder as i feel further abandoned.  i will wait to see what the 6 mth brings.

Bug -  you are a champion you worked so hard throughout treatment, messed up that you are still so tired.  but like you i start out okay, usually, and well can't even say that, i do however have increasing stamina. its a brain fuzz that comes and goes at unpredicatble times, and the vinegar in water does help quite significantly.  today i watched a program on PBS aired in So. CA, nutrition program where they talked about eating, probiotics, vinegar, and they added another element i don't think much about digestive enzymes.  but i recently got the stuff i need and added something i never took before -- the omega-3, and more flax.. i don't even want to take the stantins anymore to lower cholesteral....

and who was that that said 3.5 years to recover... please, say it isn't so!!! we have to try harder to find what will help us recover,  

so i ask, those who felt better right after a hard tx.  what did you do that may have been different?

3.5 years.

Aggggg.

That's a scary thought. I thought I would be miraculously cleared at the end of treatment.

But it is good to know others have had some post tx issues and I'm not alone.

Meki