Edema and Hep-C

[dog_lover]

As a 52 year old male. I found out about a year ago that I have hep c. (Viral load 7E6, genotype 1b, grade 3 stage 2 (biopsy)). The VA has denied me treatment because I suffer chronic depression and I also suffer from chronic debilitating back pain and take replacement testosterone.  The VA thinks that I will go out and blow my brains out if I go on Interferon. (I live in a very supportive household.) With my stubborn genotype and high viral load they have recommended that I take non-pegylated Interferon/Ribavirin DAILY for 48 weeks.) I recently began collecting lymph fluid in my lower legs,feet and I think, my hands and to a degree my face.  I was given an extensive battery of cardiac tests all of which were negative. The VA thinks it may be due to my long-term use of dilauded for my back pain. (I have an indwelling interthecal pump that administers the drug and the dosage is very small.) I disagree and think it's due to my hepatitis-c, Any ideas out there?  With my hep-c configuration would it be a bad idea to wait 6-12 months to try to get a better handle on my depression before starting treatment as the VA recommends?  Coincidently, I don't drink and haven't for ... oh gee, maybe three years.  Aside from that should I be taking milk thistle?  Besides avoiding Tylenol/Vicodin are there any other substances that I would be wise to avoid?  The VA is doing wonderful work on this nasty disease but in my case I think they may have made a mistake in judgement.  Having access to this forum is a god send and I appreciate any response you may post

[jmjm530]

I believe the interferon causes the depression, while the ribavirin just makes you plumb crazy. I believe there's a difference :)

There used to be some good stuff on interferon-induced depression over at Projects In Knowledge http://www.projectsinknowledge.com/


-- Jim

[FlGuy]

Neither are happy drugs. Just checked the product info for peg and the pharm's sheet for riba.  Both reference the psychiatric angle.  There's only one way to win with this stuff.  BTW, I found a hepatologist who belives in 'riba till it hurts', predosing riba before ifn, procrit based on % drop - not just a level, 48 for 3's, early pcrs and believes that level of damage impact meds effectiveness.  Had a long talk with his PA - see the doc in a couple of weeks.

[dog_lover]

jmjm530: thank you for your kind welcome and yes,  it is my first post.  My biopsy revealed that my load is seven-million, my genotype is 1b, further I have grade three stage two inflammation and a cat scan revealed some fatty deposits that were present on my liver.  When I say depression I mean Chronic-pain caused; lose your wife to infidelity, lose your job, lose your friends, motorcycle accident, lose your house and have to file bankruptcy depression.  It kicked my keester!  I think the VA's thinking is as you suggest, get me stronger prior to administrating this "horrible" drug.  My gripe with the VA was the way the decision was made, behind closed doors with no comment from me, none of those clowns knew me!  My civilian doctor is the polar opposite of that, she is nine-tenths compassion and care and one-tenth scientist, gosh I love her! What do you think about the adema??

[rochammer]

Hi dog lover

The good news is that you are stage 2, which means you should have the 6 to 12 months to get your depression under control. Interferon may make the depression increase. Treatment can be very hard on the mind and body. The VA recommends to wait, which is a hard thing to do, but they are just looking out for you. I would check with your docs before taking any other meds (MT Tylenol) you are on other meds and have other medical problems so be very careful and check with your docs first

[can-do-man]

Jim said......... while the ribavirin just makes you plumb crazy.

Thanks for the ideal, kinda doubt it works for me. But i've tried everything else. :) So hows your after tx going? Better i hope.

FLguy, Keep us informed on what you think. Beat to both of you.

[jmjm530]

A few months ago someone posted they're in a trial where riba is pre-dosed prior to starting the shots. A very interesting approach indeed.  Do they offer Procrit prophylactively from the start or just wait until a per cent drop? Personally, I'd ask the doc about the the former, especially if I had problems with anemia the first time.

Sounds like you've got a good,  agressive doc  who thinks out-of-the-box, which hopefully will translate into SVR this time. Good luck and let us know how your meeting goes.

-- Jim

[friole]

Hi.  Can't add much to what has been said, but wanted to welcome you to this forum.  I too think it is great. My suspicion would be that the adema is related to the hep C.  Seems to be all tied into the auto immune system somehow -- now that is not a statement I can support with a lot of links, but it sure seems to be so from comments from other forum members.

As to the depression, it does sound like yours is severe.  In the year I have been posting here, I have read many many posts about riba rage.  I think the first 8 weeks or so are the hardest, under your body and mind adapts to the meds.  WHatever you do now, it will be multiplied.  If you have rage, it will be heightened.  If you feel sorrow, it will be greatened.  THerefore, getting that under control would be wise.

I also don't understand starting with infergen.  THere are others posting here who get there meds from the VA and didn't do that from the start. Since you are prone to depression, I would want to start with a pegalated interferon.

frijole
1a, 58yof, 1.5million vl pre treatment, bx g1 s1, on 44/48 now, clear since #20

[jmjm530]

Dog Lover,

Sorry about all the pain you've had lately. I don't know how the VA works, but maybe your civilian doctor can work with the VA to get you more information. Still, they seem on the right track to get you stronger before beginning treatment. Sorry, I don't know anything about your edema issue.

CDM,

I feel a whole lot better being off the drugs for 10 weeks and my blood count is pretty much normal. I work out daily -- weights, speed bag, walking and some climbing. Some skin and gastro problems persist. As some others have stated recently (Snook and Willing I believe) I feel a lot older than before I started treating. Don't know how much of this is physical and how much is mental. When discussing with my shrink, I likened it to post traumatic stress disorder as I really had my b*tt kicked bad with sides. Hopefully, this is all temporary and I understand I have to give the whole post treatment thing time. Did what I had to do, so no regrets. Thanks for asking.

-- Jim

-- Jim

[NYgirl]

From what I was told also if I had ANY history of depression I would have not been allowed on treatment either. They are VERY strict with this because they told me as well there is a VERY high chance of suicide while on it with a history.

I don't really get why they can't medicate with a good prescription and just TRY it and SEE if it affected the depression or not...I mean it doesn't do it to EVERYONE.

I would see if perhaps you can get in to a regular doctor.  But unfortunately - it is one of the conditions and it is VERY serious.


What a bummer.

[doglover28]

Hi Dog_lover...I'm a doglover, too.  Welcome.
When I went to the doctor yesterday, he asked if I had ever been hospitalized for Psychiatric reasons.  I haven't, but I did ask for some AD to prepare me for treatments and to help deal with being recently diagnosed. At first, he wanted to wait until the appointment that we will have to dicuss in detail treatment (after biopsy and ultra sound) He said normally they prescribe them to all patients at that appointment.  I asked if I could go ahead and get started on them. He prescribed them yesterday.

[Bill1954]

Jim-- after re-reading dog_lovers post, I think the VA may be considering daily dosing with the older, non-pegylated IFN

[dog_lover]

I'll try.  It's not just a matter of picking up the phone.  These practitioners are buried under several layers of minions.  You are correct however when you say that they are using the nonpegylated version of the Inf.  When I lost everything last year I also lost my blue-chip health insurance.  My internist is a goddess, brilliant, very warm hearted and concerned, beautiful and funny. If it was her, she would get me started then in spite of a heavy patient load she would call me every night to see if I'm OK.  My internist at the VA got p/o'd at me for addressing her by her first name.  She would serve mankind much better if she were a pathologist.  Having said that the VA is tops when it comes to dealing the this disease we share. A significant number of their population have it. Their reasoning as I understand it is simply that I have a nasty genotype and if they can get it first time out they won't have to put me through that again.  I'm in Oregon and our VA is rated as one of the best VA's, the best of the best.  I disagree with their making treatment decisions using people who have never treated me under any circumstance.  Sorry to drone on so ... Dog_Lover (That part's true by the way, I have three of the sweet rascals.)

[cuteus]

one problem I see, in the vicious cycle of depression, is that hep c itself can contribute to it big time, the extrahepatic symptoms can do a number on your psyche on a daily basis. So, you are damn if you do and damn if you don't. They should have consulted with you and your PCP when making decissions related to YOUR health, though.
good luck, dog lover

[FlGuy]

I amy be wrong, but I thought more of the psychiatric warning with combo therapy were associated with the riba and not the IFN. So, i'm a little confused. As you will hear, there are many people on treatment who either started ADs before treatment or who began to use them during tx and are able to complete tx because of them.

[jmjm530]

I'm trying to piece this together -- but if I understand your post  correctly -- you're a genotype 1B, stage 2 biopsy, with high viral load, who suffers from depression.

The VA's recommendation is that you wait six months to get your depression under control (I assume with anti-depressants and/or talk therapy) and because of your high viral load and difficult-to-treat genotype (1b)they want you to take what  appears to be daily shots of Infergen plus ribavirin for 48 weeks.

In general,  Hepatitis C is a slow moving disease, and depending on the severity of your depression, it sounds reasonable to delay treatment until you get the depression under control. Assuming you do get your depresion under control, I think the benefits of waiting awhile outweigh any risks.

It's interesting that they're recommending you do daily injections of Infergen instead of the standard weekly injections of pegaylated interferon. Usually, Infergen is reserved for those that have failed treatment once. Still, we've had a number of discussions here why Infergen isn't initially used more often for with genotype 1 and other difficult-to-treat factors.

I don't have an answer which approach is better, nor am I aware of too many studies using Infergen for those that treat the first time. But from what I do know, it certainly is a more agressive approach and I assume the intent is to raise your odds of being cured from the approximate 40-50% odds given to some 1b's. You might ask the VA how long they've been using Infergen for first time treaters and if they have any statistics on cure rate of Infergen versus weekly pegalayted interferon. If they do, please come back and post what you learn.

BTW since you're posting I believe for the first time, none of us here are doctors so please take this into consideration and make sure to double-check everything with other sources.

All the best luck in moving forward !

-- Jim

[new-sojourn]

I'm older than you and was infected in 1967.  I was dx w/hep c after complete liver failure and an out of body experience-white lights and spooky vocies and all.  in 9-2001.  I tx'd and cl'd exactly 4 yrs ago-2b-after 2 wks of shots. fin 24wks of 3shots a wk and 5 ribas a day.

  I took the old fashioned intron 2b and seemed to have had a much easier time than most of the posters.  So the meds and damage and my age and long, long history of clinical depression didn't stop me.  I would have had a slow miserable death w/o treatment.  And still de depressed in the grreat beyond, I'm sure.

I also was under a shrink's care-MD-for chronic depression for over 10yrs and then went another 8 yrs w/o the meds and talky talk.

I won't go into my sad story b/it makes yours look mild.  B/the point I want to make is my depression lifted and disappeared when I began to address the hep c and work on a cure.

If you hve noticible edema, you also most probably have clinical or sub-clinical encephalopathy.  this toxic build up in the brain leads to memory and personality changes and depression.

I don't think you can cure the depression until you cure or get a handle on the hep c.  Your doctor is using outdated info to play w/yourlife.

I know the VA hospital around here has lifestyle classes on hep c and help w/disability and such.  B/the VA is the VA and doesn't want to address the problem they created w/their mass air gun innoculations and battle field triage.  If every vet from 1960 until 1990 were tested for hep c, the #'s would overwhelm the VA system, nevermind the general medical system.

There are several good sites for vets w/hep c that may give you better advice on how to deal w/the VA.  Unless one has had to deal w/the VA, civilians just can't imagine the double and triple talk one goes thru.

[jmjm530]

Good point, Bill. Didn't realize anyone was still using the old interferon.

However, Infergen is also non-pegalayted I believe, so as you say it's important to find out exactly what their intended treatment is -- the older non-pegalayted inteferon or the newer non-pegalayted Infergen.

Dog Lover, if it's the former (not infergen), maybe you should shop around some. You might find a university hospital that offers a free trial and the drug companies themselves have financial assistance programs to those who qualify. All the best luck.

-- Jim

[Forseegood]

hi, love your name cause I sure love dogs as well...one thing I might add, and of course I'm a complete amateur and not a doc to be diagnosing..we're all just speculating here of course cause there are no medical docs here:  

But I'm guessing that ironically, you probably have the "good" kind of depression, for the most part, if that makes any sense at all...*exogenous* depression and not so much *endogenous* depression...although of course with our complicated chemistries the two overalap somewhat to varying degrees...exogenous depression usually arises from *outside* circumstances in your life, you've experienced more than one loss, all in succession from the looks of it...while I am not minimizing this at all, this type of depression can be very harrowing and...

these *outside* factors can affect your chemistry, etc...but these types of incidences in your life can be *overcome* eventually with the passage of time....and other coping skills, and/or medication, etc..talk therapy works wonderfully well with this type of depression, along with some exercises you can do yourself to help things along, cognitive therapy exercises, maybe check out "The Feeling Good" book by Dr. David Burns...

You can talk to your psychiatrist about all this of course, it works really well for my depression issues, in that it points out that you get into a an illogical thinking process which can usually *usher in* the depressive feelings, if you do an *end run* on these types of thinking patterns, by logical and positive thinking, many times the *depression loop* can be avoided or at least minimized...

This is much better then *endogenous* depression (inside depression) (though like I said, they overlap a little in everyone experincing depression) Have you ever had a freind that seemed to have it all together?..finances, people who loved him all around...looks, personality, intelligence, lots of abilities, yet they just seemed to be severely depressed? and you can't account for it, cause they should be on top of the world for all their gifts?..this can be endogenous depression, where there is a stronger chemical element to it from the *inside.* This type of depression is usually much harder to treat, though of course it can be treated as well by medication, etc...

I'm speculating that the VA psych knows that all these things happened to you in relatively rapid succession and he wants to give you this year to mourn your losses properly and get used to the meds, etc,...I can see where they might think this to be best tack...

as was said, this is a slow moving disease and I'm sure you'll be ready to treat once you feel a bit better...and there is that element to the story where the hep c itself can come with a type of depression...anyway, sorry for the long windedness, I hope you start to feel better soon, best of luck to you....

[Bill1954]

Further addressing some of the questions you posed above:

[Forseegood]

hi Bill, is this other pain reliever, vico whatever, forgot, the one other then vicodin (sorry I sound like such a ninnie) have codeine in it? I'm allergic to codeine and I'm looking for a stronger pain reliever that doesn't have it...I'd think it would..and of course, I could always go look it up...if you have any suggestions...

[Moniker]

I am being treated at the VA Hospital in West Haven, CT. After I had been on treatment for a few weeks, I developed depression. The doctor put me on an antidepressant, and sent me to talk to a "shrink". That did help with the depression and I was able to continue treatment. Tomorrow I'll do shot #45 and I'm feeling ok.

I do think that if you have real serious clinical depression, treatment could push you over the edge. What the VA is saying does make sense; get the depression under control first. You can live a long time with hep c; I've had hep c for over 30 years and I'm still only a stage 2.

The VA hospital I go to has given me good treatment. My VA hospital has doctors who also work at Yale New Haven Hospital. Many VA hospitals have very good reputations. Find out if there is a hepatitis c support group at your VA hospital. There is a hep c support group at my hospital - that's a good place to meet other patients on treatment, or patients who are just starting treatment, or are done with treatment. The VA does treat a lot of hep c and they seem to be doing a good job for me. They have a lot of experience with hep c because so many vets have hep c.

Hepatitis c is a slow disease; you don't need to rush into treatment until you get a better handle on the depression. Keep us posted as to your progress.

Bob

[NYgirl]

Said: I'm allergic to codeine and I'm looking for a stronger pain reliever that doesn't have it


Unfortunately for you if you are allergic to the codeine based narcotics...most likely the stronger ones are also morphine derivitive and are going to bother you more.

Vicodin is really no "stronger" than a tylenol #4 but it's made with hydrocodone which is a synthetic type base.  As it's synthetic it might bother you = but vicodin is not really anything that I would call "strong" at all.

It might be worth a try though - even if there isn't really much difference it might be enough!

[GoofyDad]

What about Ultram (tramadol)? I never took it, but it's what my liver-dude prescribed. It is opoid based, if that's the problem.

[Bill1954]

Hey there, gal--

I believe Vicoprofen is hydrocodone /ibuprofen combo as opposed to Vicoden which is hydrocodone/acetaminophen. You might flag down Cuteus next time she swings by and ask her for specifics. I seem to recall it was her drug of choice for Tx.

Take care,

Bill