dose change

[nep75]

Hello everyone.  New here.  I have a story and a question.  

My fiance has Hep C type 1b. Biopsy 1:1, minimal damage.  He has done 26 shots on a 48 week plan.  He's been on Redipen 150 @ .5.   Started with 24 million count.  His 3 month viral load came back undetectable.  His 6 month viral load came back undetectable.  :)  Has had some really bad sides.
He's had 2 jaw surgeries and had been on Vicadin for months.  The last couple months were prescribed by his Dr.  He was feeling really bad!!  He was taking more than he should have and some of the bad sides could have been from that.  
Here's the thing... His dr. pulled him from pain meds.  So my man went off and was going to quit.  Went to see dr. he said he wasn't going to prescribe any more pain meds but could go to lower dose.  We said no, want to stay with 150.  So I called them Monday to let them know he did regular dose and is going to continue with tx.  Nurse said that doc already prescribed the 120 and went on vacation.  Asked why he lowered the dose by the nurse, he said because of the weight loss.  Didn't say anything about the sides.  The Be-In-Charge nurse we called about this said his weight was really too close to be dropping to that dose.

I was wondering if a dose drop happened to anyone else because of weight only.  His labs are fine, wb a little low but not enough to be on meds for.  I'm not liking this dr. at all.

Thanks for listening, please let me know..
~ Niki

[GoofyDad]

Yeah - I figured it would be the paper weights. But the dust and the junk under the table was to be my escape clause.

That sounds like a wonderful move you made. I like the coast down there a lot. I've spent a fair amount of time both on top of and underneath the Pacific.  

Enjoy the season!

[GoofyDad]

Think you buy much stuff on ebay? <a href="http://www.auctions-registration.com/ebay/">Check this out</a>.

[vegas777]

yes, don't forget those...and please don't forget to email Dr. Cecil...I am sure he can give good input...

[NYgirl]

Thanks B

I am off until the 3rd of Jan and will be checking on my home computer (provided I can give my kids enough of my Ambien to get a chance to get on the thing ;-)

I have to make sure I email myself all my notes that are on this computer before I leave today so I have them for my appt. next week!

[GoofyDad]

Organized? Holy Cr*p Kalio! I challenge you - where do you see organization there? I mean, my desk can get pretty bad. And my car - well with a 6 year old in it everyday....

But, Holy Cr*p! 'nough said.

Have a great, safe and enjoyable holiday!

Goofy - shamefully waiting for some cr*p from ebay to put under the tree......

[vegas777]

okay I will do it now

[NYgirl]

Can you slide me his emial to my home add? I will email him tomorrow after I deal with this yucky mandatory Christmas black tie event that I do NOT want to go to tonight!

[vegas777]

I just herd on CNN the union leader said the strikers will return to work...Goof has a very good point about asking Cecil..I emailed him about me not treating and he got back to me within 48 hours...

[NYgirl]

thank you so much. don't worry i surely DONT consider it rainning on my parade

I am NOT thrilled that there is a flatline vl going on....I meet with the doctor on the 29th and if he has no words of a treatment PLAN for me if I don't start dropping (which face it I should have...something isn't right) then I am going to have to switch.  I am off all next week and going to start looking into appts right away.

I am an hour out of the city so it's not impossible - but if they would cancel the strike it would help A LOT.  I have to figure there are knowledgable doctors in the other cities in between perhaps.  The area I live in is VERY affluent (although I personally am not) and I am thinking he doesn't see all that much Hep. I would be better off in a much larger environment of a city.

He doesn't seem to KNOW too much to me considering he is good about doing what I ASK him to do - he should be the one TELLING ME what do to right?

I think tomorrow I will email Dr. Cecil or post to him or something.  Then at least I have THAT to go to my doctor with from a worldwide renowned doctor...might be helpful (although I really just want him to be more AGGRESSIVE himself).

Thanks Goofs. As always!

[iceboy]

I

[NYgirl]

Having had a three log drop at week 4 and nothing since - I'm really in a strange spot.

Had I ONLY had a 12 week I would have been happy knowing I achieved BETTER than the 2 log BUT because I know nothing has changed since week 4 having HAD that 4 week...I think it showed me it is CRUCIAL to have as many PCRs to get a REAL FEEL for what is going on as possible.

I really believe it should be every few weeks to get an accurate count of what is what for people who are NOT undetectible.  I mean there is a huge difference between 4 week and 12 week PCR time.

While my results really made me mad/sad/angry etc. I DO have a realistic view now.

It's like saying using the old test <615 I would get that UNDETECTIBLE but...it's NOT really accurate is it?

All the more knowledge the better.

[jmjm530]

Not sure you caught my other posts as things get buried with multiple topics per threads but in summrary -- (1) From your point of view you should only focus on your week 12 PCR and not the 4-week. The 4-week has the most relevancy only when non-detectible.  Not enough studies to conclude from variances between weeks 4 and 12 and; (2) If you do want to be more agressive, you have some great resources in the New York area for consults. If you didn't get the names I posted before I'll look em up again. Hope this finds you well and not too down. You did get over a three log drop at week 12, so certainly there should be good reason for hope.

-- Jim

[beamishboy]

Ice:i got nothing to add at this juncture,i believve yu r talking doubledose but lower dose #'s--from what study???....is it just a matter of spreading the goodstuff out more eevenly?  How/s it going treatmentwise for you? how close to vl test wk-12??  I like your posts,always read em,don't respond--i am in the depths of a serious brainfog most days---HEAD HURRICANE more like it--lotsa debris gettin blown around & i'm not hanging on to anything,sooo not very cognizant--can't write for sh#t!!!
NYGURL:tuff call,i mean yu got the drop,but yu had it 8 wks ago!So,what's going on in there,everybody taking a little holiday??No viral-fiting during the holidays,or what???On the upside,you know,maybe a little boost(UGH!) in riba???--more massage?-i'm not kidding!!-it's GOOD for you&makes ya feel sooo much bettr!!!!--I am followin yur dilema w all interest&diligence i can muster,,but i still wanna know about this 44 /bluehair encounter,r yu embarassed to admit you merely winged her & she got away?--was she driving a big ol buick/olds/caddy tank---those cars were the Humvees of last generation--gotta lot of side armor-steel-jacketed ammo mite just be warranted if you need termination!!!!!!!---Nothing can brighten a GIRL's day like emptying weapon at moving target with result!!!!!!--(w apologys to winston churchill)

[NYgirl]

Jim I put the names at Mt. Sinai etc in my file.  I've got them right here with all the other things that I keep in my Hep-Bible.  You know a problem that makes everyting so CONFUSING is that EMOTION gets into play with all these details.  Three log drop at 12 week is good but not UND. but it's good but my HEART hates it so it confuses EVERYTHING.  Do you know what I mean?

it is difficult to separate FACT from Emotion in it when it's you.

Of course you know I'm not giving up.

I am enjoying my RibaRages too much.  Now as New Yorker it gives me the perfect excuse to go around "ba da binging" little old blue hair ladies - and giving the Eagle Finger to cab drivers and girl scount troops in my way on the highway.

Would I stop treatment and lose my only possible legal defense?  Oh hell no.  Then I'd have to get my Midnight Special licensed and that's too much trouble for me.  ;-)

Ooops I don't think that's a 44...must be the brain fog!  :)

[GoofyDad]

At the risk of both repeating myself and offering unsolicited advice, I just want to toss one more hat into the ring in favor of a second opinion.

I think the 3 log drop is encouraging, and you should be excited about that. There good news there and I know were we're all excited about it.  

On the otherhand, I'm less enthusiastic about your doc (who seems like maybe he's not all the way there for you?), the 1a/1b double whammy, and the flat VL trend you saw from week 4-12.

I'm surely no expert, but to me, common sense says you would rather see a down trend in the PCRs. Maybe I'm wrong about that - but if I were in your shoes, I would want to hear the opinion of someone who compares a lot of 4 and 12 week PCRs.

It's been said that Dr Cecil often consults by email. Other researches have answered email inquiries from members of this board, especially when offered a courtesy consulting fee. And as Jim points out there's no shortage of hepatologists in NY.

It's no secret that I'm not the biggest fan of current combo treatment. However, once on it, I think we owe it to ourselves to be as agressive as we can reasonably be towards acheiving our goal of SVR.        

I hesitated to post this because I don't want to rain on your parade. On the contrary, I hope to encourage you to leverage every oportunity you have for success.

Good luck! We're all pulling for you.

[cougareyes]

It is randomness, there is something GENetic that plays with the HCV and tx that none of us can control(YET). That's why there is no linear progression or really any rhyme or reason why one person progresses differently from another. I've seen drinkers progress slowly and liver friendly people faster.
I've heard of people who really didn't comply that well and even drank or used drugs on tx and cleared. Then people who were 100% compliant; young, strong, a low viral load: and didn't.
I've felt no known ill effects of HCV until liver disease progressed to the point of making me sick. For some HCV has been more dramatic. Same as the effects of tx, we've all said it before "it's a **** shoot".     Peace

[NYgirl]

Except that last year I bought everything on line and I blew UP my credit cards because i didn't recognize how often I was hitting BUY IT!  Bid!  Buy it!  Buy it NOW! :-O

So be careful with that or you too like me can go to debtors prison ;-)

[NYgirl]

I started that way until it ran out.....

I have much more of a horribly addictive personality than I want to admit let me tell ya!  I went CRAZY.  I am crazy. I just couldn't stop.

And ebay was my biggest downfall what did I think I needed all that stuff that i HAD TO WIN NO MATTER WHAT for my kids for?

They were like uh ok nice.......what is this?

Debby <<< Shopaholic in addition to lots of other things!  ;-)

[NYgirl]

Thanks for very excellent words.  Every single one.

I am QUITE curious about what Geno the one's left might be myself!  Like did all the As get beat the snot out of and a few stubborn Bs hanging out?  I mean it would be an EXCELLENT thing to know...if only for the knowing reason I suppose.

I was also wondering this one: I had SEVERE anemia at week 4.  I do not have it now. I wondered if that had any impact on the 4 vs. 12 week results at all.  Another question that doesn't really matter I suppose but I was curious.

It's easy to overthink every single thing in here because we are so desperate to get this stupid idiot bug out of us.  I was actually going "wow maybe I didn't drink enough water" LOL I mean how nuts is THAT?  :)  "Maybe I should have taken more antioxidants"...the list can go on and on.

I won't give up.  This just makes it more fun for me to get SVR in the end.  Then I can say I really kicked the s.h.i.t out of something more stubborn than me.

[MAUIANGEL]

I went to my Dr. yesturday and he said he's going to do a viral load at wk 12 and if it's not working pull me off of the tx. I wasn't scheduled for a viral load till wk 24. Is this something that is common. I know it sounds crazy but I don't want to stop tx. I'm a geno 1a and realize it's hard to treat but I want this to work soooooooo bad...I feel like tx is the only chance I have of beating this.

[jmjm530]

Don't know why I thought you were a geno 1 -- just got reminded you're 1a and 1b so maybe I added the two together -- forgive the viral humor. So, yes, 36 weeks after being non-detec is a good ballpark number but just wish you'd at least get a consult with a doctor who has more experience with customized treatment.

-- Jim

[jmjm530]

I think the plus 36-weeks is only for geno 1's. BTW did you see my post recommending some additional consults in the NY area?

== Jim

[jmjm530]

The dose seems to be working very well, why changes horses? Maybe it's time to find another doctor who will let him maintain dose. Try a hepaptoligst (liver specialist) as they usually are more amenable to agressive treatments. I remember early in treatment I was so nervous that they were gonna reduce my riba because of weight loss that I would intentionally wear my heaviest boots and load up my pockets with all sorts of coins and junk :) Later, I realized all I had to do was to tell them I wanted more than the normal dose but all med teams don't react the same to patient's inputs.

-- Jim

[ifx23]

I lost 65lbs during treatment, mostly in the first half so for approximatley 24 of 48 weeks I was about 30 lbs under the recommended weight for the dose that I was taking. When I first talked to my nurse about a dose reduction I was told they would not consider it unless I was about 40 lbs under the dose and having bad sides. I did have a reduction in riba the last 4 weeks due to hg being low otherwise that was it.   Get another Dr if you are both not happy with the results you are getting. Good luck! : )