spouses

[timedog]

Group,

Shot 4 today. My SX have not been as bad as some have described here so far but I can't say I have been sx free either. My quesiton of the day is if any one here is aware of a previous post or a web site that could help enlighten my girlfriend as to what I am going through and how she can best help/understand. I am not a big talker first off and also I don't want to come across as a whinner/baby. I don't want her to ask me how I am doing every time I sigh or sit down to catch my breath. So if someone is aware of some writting on this subject that I could share with her it would be very helpful.

Second thing there was a bit of a discussion started when I mentioned that my Dr was considering lowering my med's based on some test results I had gotten. A few people here expressed their concerns which caused me to do some more research. Let me just say that based on my limited research it is standard to adjust med's based on the body's reaction to them. My analogy is that this stuff is more like cooking less like baking.

[NYgirl]

Please consider that the most important weeks according to the studies are through week 12 and try NOT to adjust meds DOWN at all before then, from what we have learned in here it could cause a real problem. Of course each to his own but mostly we find people in here with relatively few sides mostly trying to UP their dosages to get max effect out of them. Not downing the Riba is crucial.

[timedog]

Hey nygirl,

was never talking about riba it was the peg which can effect white blood cell count. Just so i can make sure I am fullly informed do you have links to the research you refer to.

[jmjm530]

Someone wrote a nice piece for spouces and friends. Can't put my finger on it but maybe someone else can. If not, go post same on the Janis and Friends web site. I think that's where it was first posted.

Regarding reducing treatment drugs, espcially during the first 12 weeks. Don't know your stats but in general...

Researching the web can be a tricky thing because many of the earlier drug protocols (and some current) often talking about reducing drug dosage.

However, the most current thought based on newer studies stongly suggests that reducing meds during the first 12 weeks has a negative impact on SVR (cure). For that reason, most hepatologists are now being proactive with "rescue" drugs like Procrit and Neupogen to keep patients on full-drugs whenever safely possible.

You can read more about this on the Projects-In-Knowledge web site but make sure you're digging up the most current articles.

Personally, if my doctor wanted to reduce meds instead of trying rescue drugs first, I'd get a second opinion from a liver specialist (hepatologist) who treate large numbers of hep c patients. Unfortunatly, many GP's, and even GI's are not as up to speed as they should be.

-- Jim

[timedog]

I am seeing a liver specilist.

[jmjm530]

Could be wrong, by lowering the Peg early on can be just as bad as lowering riba.

Since you've decided to research some of this on your own, a good first step would be to get copies of all your bloodwork, as well as asking your doctor specifically on the basis of what blood results does he want to lower the Peg.

The number you want to focus on is ANC (absolute neuts) not WBC. Most agressive hepatologists do not get concerned until it falls below 500. Mine doesn't get concerned until 200-300. At that point they often use Neupogen instead of reducing dose.

You understand of course that none of us here are doctors. Good luck.

-- Jim

[jmjm530]

time said: I am seeing a liver specialist.
-----------------------------------------

Hopefully, you're being given good guidance. But if after your research, you're uncomfortable with what your specialist advises, then go consult with another. I consulted with at least three liver specialists at one time or another. This is not that unusual. The more involved and educated you become in your treatment, the more likely a better outcome.

-- Jim

[timedog]

agree.

[strator]

Not sure if this is the letter your talking about: Someone had posted it here and I kept a copy.

"Letter to People Without Hepatitis C"
Note: This letter is one of the best found written for people without Hepatitis C. Please feel free to print this letter and give it to those that need to understand.

Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin

[cgd914]

These posts have brought me to a question.  I am 44/48 have been on full dose of pegasys and copegus except for I believe my 5 or 6 week they dropped me to 135mg of pegasys for one week due to low wbc's but then back to full dose the following week.  I am undetectible at weeks 12 and 36 weeks (1b)  will that one time dose reduction still make a difference in SVR?  Or am I safe now that I am undetectable?   Hope this question isn't too confusing.  Thanks

[Alady1620]

There is a page over at Janis and Friends specifically designed for spouses/friends/family.  It was very informative for my husband, although, sometimes it seems he forgot what it said.LOL

[NYgirl]

Very common malady - brain fog sharing.  He loves you so much he's just trying to take some of the sides from you you lucky girl!   :)

I'd love to say what DO men remember but since I met the men in here honestly I can't poke toooooo much fun at men in general anymore like I used to LOL

[ral]

Well time

You are not a whinner if you whine on these meds as they will bring down the strongest lady or man. I was a national Tae Kwon Do fighting competitor and I was like a whipped dog on this stuff. I did 18 months and the first 6 without any anti d's, I also had many sides plus many personal family matters that were severe. But with the help of this forum and the people on it I made the distance. I did not remain clear but I did do the fight.

Some spouses just are afraid to face what their spouses face with this disease as it is their way of coping. There have been many posts written here and other places that explain the side effects of tx so try and have her read as much as she can. If she is afraid and can't face the music then there is probably nothing you can do for her. Just try and take care of yourself at this time.


GOD BLESS

ral

[azgrl]

My husband used to read this site with me in the beginning.  It really helped to hear how other people were dealing with tx.  It helped prepare him more than going to the doctor with me.  My doctor wouldn't let me start tx without talking with him first also so you might want to bring her into an appointment with you.  She explained what to expect with me and what to watch for.

By the way reading this site helped my husband understand why I like to come here.  He loves to see me laugh.....

deb in az

[Paris47]

Thanks for the letter, I printed multiple copies,
(hope that's ok, sure don't want to get into any trouble). Sending them to my adult children.
Great letter.

[Moniker]

Jim, you wrote: "However, the most current thought based on newer studies stongly suggests that reducing meds during the first 12 weeks has a negative impact on SVR (cure)."

My Pegasys was reduced a lot during my first twelve weeks of treatment: some weeks I took 50%, some weeks 75%, one week I took no Pegasys at all. I was undetectable at twelve weeks, and again at twenty-four weeks. Jim, are you saying that my chances for SVR are not so good because my doctor tried to get my WBC up without Neupogen. From week sixteen till now (I'm now at 38/48) I've been on the full dose of Pegasys (with Neupogen). I've always taken 1200 of Riba. It's discouraging to think my doctor messed up, and now I won't get SVR even though I've been undetectable from my first PCR. My doctor doesn't believe in extending treatment.

Bob

[jmjm530]

My NP told me a story the other day. A patient of hers came in for one shot of Peg, couldn't stand the stuff and stopped treatment. Six months later the fellow showed up for a blood test and was non-detectible. Go figure. She had another story similar but the fellow took three shots. Go figure again.

Point being that we all react so very individually to these drugs that it's very hard to say what will happen to a particular person if he/she does this or that.

But yes, studies do suggest that (in general) you have a better shot at SVR if you keep full meds (or at least 80%) for the first 12 weeks, or at least 80% of that time. But on the other hand, you were undectible at week 12, which is a very positive predictive factor, so I wouldn't worry at this point. Lots of people have made SVR on reduced doses.

-- Jim

[Moniker]

Should I demand that my doctor extend my treatment now, or is it already a done deal that my chances for SVR aren't so good because he did the wrong thing during the first twelve weeks of tx? Can the dose reduction be made up by taking 100% for most of my treatment?

Bob

[jmjm530]

Even if I had all your treatment facts, not sure if I'd have an answer to that. Not sure if there is an answer to that.

My unprofessional feeling is that you'll be fine given the fact that you were non-detectible at both weeks 12 and 24.

But if it were me, I'd be asking this question to one or more hepatologists on an outside consult. That's what I did when trying to decide whether to (and how much) to extend.

-- Jim

[jmjm530]

"all over the map" is a good way to put it.

Forgive me if you've already answered this --  but a few post-tx paranoid questions. LOL.

When you relapsed, did your enzymes go up at the same time, and if so, which ones and how much? Also, I remember your PCR was only about 1-2 weeks after treatment -- curious how high was your viral load? Thanks.

-- Jim

[Moniker]

It wasn't a one week reduction. Weeks 1 and 2 I took 100% of the Pegasys. Weeks 3 and 4 I took 75%. Weeks 5 and 6 I took 50%. Week 7 I took no Pegasys at all. Weeks 8 and 9 I took 75%. Weeks 10 and 11 I took 100%. Weeks 12, 13, 14, 15 I took 75% of the Pegasys dose. From week 16 until now, week 38, I've taken 100%. (The Neupogen was started a few weeks before week 16) I've always taken 1200 of Ribavirin each week. I was undetectable when tested at week 12, and again at week 24.

Why would the doctor do something which would lower my chances for SVR? It's very discouraging to think that my odds are lowered for no good reason because the doctor did the wrong thing. I was feeling that my treatment was going well, but now I think should I just give up, what's the point. My odds were only 50% for SVR to begin with. I don't want odds lower than 50%. I had thought that my odds were good because I'd been undetectable from my first PCR.

Bob

[Moniker]

When the doctor reduced my Pegasys, I asked for Neupogen and the doctor said first they would try and bring up my WBC without Neupogen. The doctor said the WBC could come back up on it's own.

All the doctors I've spoken to have said that I'm doing well in treatment, and that I have a good chance for SVR because I've been undetectable all through treatment since week 12, and possibly before week 12. Why would they tell me that? Are they playing games with me? Did they do the wrong thing and now they just want to cover for themselves?

I thought that because I've been undetectable since my first PCR in treatment, and because I'll have been undetectable for 36 weeks when I finally stop treatment, that I'd have a good chance of SVR. Does the dose reduction early on in my treatment trump all that?

Bob

[goldyn]

dont even put it in your mind to give up now you are responding great so what ever the amounts you were taking has worked for you yeah maybe your dose was lowered but you were for the most part getting meds in your body weekly,moniker your doing great so keep up the good fight........

[Moniker]

Yes, thanks Goldyn. I meditated, had dinner, and now feel ok about things. It's important for me to stay positive. It does seem to me, and to my doctors that my treatment going well. I think as long as I'm undetectable for 36 weeks on treatment, I should have a good shot at SVR.

Bob

[jmjm530]

Thanks. I'd be curious what your first post-tx ALT/AST was but I'm assuming it was in the abnormal range.

The photosensitivity and some other stuff are a real pain but there's no free lunch with hep c and interferon/peg is the price. I knew that going in and I'm more convinced then ever that a lot of folks aren't being told the whole story. I heard it from a very knowledgeable old-time MD who no longer practices. As a stage 3, I really didn't have a choice but others do. My NP emailed me back tonight regarding some of my post-tx sides. Basically she said that any sub-clinical or underlying condition is aggravated by interferon. That's a lot of territory. All the best luck with the next round.

-- Jim

[can-do-man]

you very well said....I really didn't have a choice but others do

When i was first dx. by my family doctor, who BTW is around 65 i Didn't know what hep-c was. the town i live in has several GI in it. But he told me he was sending me to this teaching hospital, this was even before my bx. so we had no ideal where i was at. I told him wow this must be something really bad. He said it depends but between you and me the gi's here don't much care about if you need to tx. or not. He said sometimes he felt they were in a race just to tx. and who would have the most sucess. Now that i know more i agree with him. I feel alot either don't know, don't care, or just want bragging rights.

[jmjm530]

Hep C was "discovered" I believe in 89. I spoke to this doc probably ten years ago. He was very down on current treatment practically calling it barbaric in terms or risks versus rewards. This was before the internet for me and I went on my with my life as normal as I had since 1969 when I was diagnosed with chronic persistent hepatitis after an acute attack. It was only my follow-up stage 3 biopsy and some better tx odds that brought me to the table. I like company too but I agree there are too many pied pipers out there and many in the medical community. Let see how many would treat themselves with little or no liver damage.

-- Jim

[can-do-man]

I know one that wouldn't if he was a stage 0 or even a 1. and i see him at the hospital every so often.

[Moniker]

Kalio, you wrote: "I still think you did more than the 80/80/80 rule allows and your chances are excellent."

Jim seems to be saying that the studies he's read have said that a Pegasys dose reduction during the first 12 weeks will lower the chances for SVR. My question is, if the Peg dose was reduced during the first 12 weeks, what can be done? Is the damage done and will no amount of tx extension bring SVR chances back up again? Is the damage fixable?

I would like to read the study myself so that I could understand all the ramifications, and know better what I should do now. I did look on the Projects-In-Knowledge web site but couldn't find the study. Could you tell me where to find it Jim? Thanks.

Jim, I hope things are ok with you. I'm sorry I'm a little crazy now, it might be one of the side effects. I realize you've got enough to think about without my worries too. Sorry.

Bob

[fishdoc]

flip side- my last biopsy, although long ago was 0/1, right can man?  I chose to treat, after sittin on the fence 12 years, watchin and waitin,... pondering the complexities of life, social injustice, oh yeah, and when to treat.  ..;)  I suspect I would grade higher now, given slightly ( 2 or 3 point)elevated enzymes for 1.5 years, but maybe not.  Not gonna find out either, unless worse case scenario!! I decided this was the time, before additional risk factors for clearance (time (age) marches on).

[can-do-man]

Now don't go get your gills in a uproar. As long as the person understands the facts and risk vs. reward and have a good honest doctor if they want to tx. I have no problem with that. You seem to know going in all that and decided it was best for you. Where i have a problem is where the person has no clue on any of this and a doctor seems to push tx. without the person understanding the odds and the poison their putting into them.

[beamishboy]

Moniker-i was told that if i was clear at my 12 week pcr ,my chances of SVR were +73%....I see no reason why your chances wouldn't be at least that Good....heck you are compliant and you are gonna finish 48 weeks of trx-odds gotta be incredibly high!
BE WELL,hang in there,i'm gonna do some meditating mysewlf..........i am a total basketcase;i should make copys of Strator and SALs???? letters about hepC and plaster them on my back&belly& maybe wear a angry clown mask

[can-do-man]

Being you were UD at week 12 and maybe before and still was at week 36, i Don't know how sensitive your pcr was. I would go with what your docs say. Being UD 24 weeks after your 12 week pcr should trump anything else. Be happy guy, your odds are very much on your side. Best going forward.

[jmjm530]

I can't pinpoint the study but you can google "hepatitis c 80/80/80 " and probably come up with some hits.

Since one of the "80's" is the riba (which you took 100%) then Calio is correct that you probably did do 80/80/80 and have little to worry about in that regard, especially in light of your week 12 non-detectible response.

As to the question of extending treatment, etc, -- because of the missed doses -- I doubt very much any study has been done on this so anything someone tells you would probably be simply speculation. But as I said before, if you're at all uncomfortable with your current treatment or advice, please see another hepatologist for a consult. There are many factors that go into deciding whether or not to extend treatment such as genotype, fibrosis, pre-tx viral load, etc and a good hepatologist will weigh it all.

If you've been following the discussion group, you realize you're one of the lucky ones who is non-detectible at week 12. I would put your chances -- missed dose or not -- then very high up on the list of those treating.

Anxiety/worry is understandable under any circumstances with what is at stake. And as you suggest the treatment drugs amplify those feelings more. I went through it myself, most of us do.

Bottom line is that the outcome at a certain point is completly out of our hands. Out of all of our hands. Regardless of how hard we try and fight.  We do our best and then the dice roll. I found this very hard to come to grips with myself, especially now when my tx has just ended. It's sort of against the American way as I was brought up -- where if you work hard you will succeed. The virus apparently was never told that :)

Just try and think positive -- with your 12-week non-detect, I really feel you have a better chance than most.

-- Jim

[Moniker]

Thanks everyone! I'll just put on my riba rash cream, rub in the Bengay for my joint pain, turn on my humidifier to help clear my sinuses, and go off to the world of pleasant dreams. Good night everyone. God bless us all.

Bob

[GoofyDad]

<i>It's sort of against the American way as I was brought up -- where if you work hard you will succeed.</I>

I was raised with the same ethics. Then came my first date, and that night I learned it was all a crock of hooey.

BTW, I like your bevy of co-stars!

[dyce]

jmjm says , we have to roll the dyce,

Ha jim, I know I'm just a freshman around here, I can take a little slappin around but please ,do you seniors gotta roll me. Ha even us dyce have feelins.

Dyce

[Dale_Ray]

I'm glad you are doing well with your sides. Know one can explain exactly how they feel to someone else (spouse) unless they have been there. How does it feel to have a 12 pound baby? Not describable. If she reads the possible side affect list for the drugs that's about as good as it gets. I thing the Janis and Friends site gives some pretty good ideas too.

What I had commented on reduced meds was that should be the last resort. If the stuff is doing a fried egg on you then the doctor will know. I prayed mine would be reduced but my doctor said if you want success and you can bear up to it you need to keep going at these levels. Stay safe and good luck.