Hit The Wall

[Chriskid]

The honeymoon is over.  Hgb hit 12 one month ago.  That’s a 30% drop from base of 17.5.  I suspect it’s gone lower than that at this point.  Feels a little like death is at the door.  The idiot GI I’m using doesn’t have follow up tests or even an appt scheduled at this point.  I’m suppose to call and remind him.  And he’s already made it clear, no rescue drugs until I’m a lot sicker.

I’m aware of my options:  Could seek out another Doc, could go to PCP and beg for Procrit, could drop the Riba dose.  My bx showed a 1,1 so I’m not in dire straights.  Do I really want to go for Procrit and put more drugs in my body?  I’m thinking not.

I’m thinking the smart move is to drop the Riba to 600 mg from 1000 and get back to a point where I can function.  Then re-evaluate.

I’m also aware of the studies that say doing that even short term could lesson my chances of svr.  But the risk-reward equation just got heavier weighted towards risk in my mind. I can’t help but wonder if I’ll ever be able to think straight again and who knows what other long term probs might be in store.  As we’re all aware other options are coming up.

52 yrs old infected 30 yrs
1a
VL base 780k—12wk 412.  UD some where between 12 and  20 wks.
Currently in wk 28

Any opinions?

[Dale_Ray]

Chris sorry your not doing so well. It sounds like you have thought it through and come to the best decision for you. My stats are the very same as you except 2 years older. I am on shot 22 of 48 (Pegasus) and 1200mil of riba. My white cells dropped to far and they had to add Nuprogen shot every Friday. I just went through 6 weeks of not feeling so bad and now with platelets down and whites down I feel really bad. My wife worries because she doesn't really understand the ups and downs of the treatment and the not knowing from day to day. She has been a good nurse though. Your right new drugs are around the corner so you're young enough to deal with it in a couple of years if that is the course you take. Quality of life is as important as anything. I simply wish I could run and play with my grandkids like I could last October. I miss that. Good luck to you Chris. PS: yOur doctor doesn't sound like he is on top of his game to be honest. Dale

[NYgirl]

It's never a really smart move to drop meds I don't think. It will hurt your chances and should be considered a last desperate move.

I know how you feel, went from 15+ to 9 in a bit over a week. That was almost a half drop if you can imagine in such a short time.

I came in here and took the advice: start the Procrit NOW. I did. I have never regretted that move for a second. While it did take a bit of time to work - it DOES and it works FANTASTIC. It totally ironned out the problem.

Today since I dropped to only once a week my hemo is at 10.5 BUT it doesn't bother me too bad because my body has gotten used to it or something I guess.

Usually an insurance company looks for you to be UNDER 10, in the 9s before they will authorize the Epogen so you are going to need this doctor to show that you started at a very high number in the first place maybe.

Please consider it seriously - there is just no reason not to. Dropping meds can make a huge difference and again I would believe should be last resort.

[NYgirl]

I can't think that the Epogen gave me any sides or anything at all except fix the problem and keep me on tx.

If you can just get it into you and see how much BETTER you will feel...you will be glad you didn't mess with your meds.

[FlGuy]

You already have 7 months invested in this adventure and it took you a while to get to UD. I think the most frequent opinion you'll get is to drive the doc for procrit and not reduce riba.  Asking the right doc is a litle tricky.  I had standing appointment with a hemotologist who would monitor the blood work and make the decision for that stuff (required neupogen not procrit).  When I asked the treament doc (a gastro) for sleep aid - Ambien, he sent me back to the pcp.  So, if you decide to not reduce riba -  I think you shouldn't reduce - then it's down to getting to the correct doc to plead your case.  Maybe you could encourage them visually, make a movie and share it with us too.  Good luck.

[roaming]

Sorry to hi-jack. This will probably seem goofy but does anyone seem to accidentally bite themselves more than usual since starting tx. In the last 2 weeks hubby has bitten himself at almost every meal. Sometimes twice.

[Karay]

Oh my God, I just thought it was me!!  Yes, I've done that quite a few times lately.  Very strange....guess its just more "fun" sx from the treatment!  I was starting to think that I was cracking up & that I'd end up in a "Hanabel Lecter" face mask!

[Algernon]

I feel the same as you about adding drugs.  The less I take the better I feel (I won't even take the Tylenol anymore).  BUT I do take the Procrit.  I felt like I was gonna die before it kicked in.  I stopped it for a few weeks and felt myself sliding down again.  Now back on.  My doc looks at how far and fast your hgb falls (not just the magic number of 10).

All that said, I think just like you do about the risks vs benefits of these drugs and I've almost stopped many times.  But each time I think about all the damned weeks I've already invetsed in this and I keep plugging.

When my Procrit kicked in, I felt 95% of normal.  It was amazing.  You don't have to keep feeling the way you do today.  (On the other hand, I still think about quitting every day--I need to know the option is there).  Wishing you the best.  Deb

[roaming]

Thanks for the reply. He was wondering if anyone else seemed to have that problem.

[friole]

From 17 to 12 is  massive drop.  An awfully lot of the time, the doctors seem to try to second guess the insurance companies and use them as an excuse to not prescribe additional meds.  I also go to a hemotologist for the blood stuff. They are much more concerned about quality of life than the GI. I suggest contacting your insurace company and finding out what exactly the requirements for PRocrit and whether there are extenuating circumstances.

I believe you must feel very badly right now with that drop, but as FL said, you have too much time invested to quit now.  You can do it.  Procrit is okay.  Sure -- I fought those additional meds too, but in the long run they help, and whatever can keep you on maximum dose is what you should try to do.

Is it warming up on the Cape?

[Mister beagle bailey]

You are on the meds 7 months now and I wouldn't give up at this point.  Your HGB is not that bad yet.  Most drs. won't give rescue drugs unless you drop below 10, so try to hang in there.  I know It's not easy but try to hang in there.  My HGB is 7.6 and I plan to go all the way.  However, I do get 60,00 units of procrit a week but that's because I'm below a 10.
Hope you start to feel better soon.

Beagle

[Algernon]

Why is your doc so opposed to Procrit? I know that my doc is down on neupogen because of the sides (and he's a pretty pro-drug kind of guy).

[Chriskid]

Did a search on Procrit SX’s.  The first thing that comes up is an EBay ad, apparently I can bid for more misery :) Did find the following which has me concerned.  I looked at this a while back and decided to just try and tough it out, till now.

      • increased blood pressure;
      • headache;
      • a "flulike" feeling;
      • increased heart rate;
      • nausea, vomiting, or diarrhea;
      • numbness or tingling;
      • tiredness;
      • muscle aches;
      • a rash; or
      • injection site discomfort

Took my morning Riba dose but I’m still on the fence about which way to go.  Thanks everyone for your input, really helps with a difficult decision.

Friole-yes we’re in the 50’s now but dealing with the usual cold spring winds.  How’s your brother doing?

[roaming]

where do you get the emergenC. Also I think it was rocker talking about a protein / greens powder mix. Does anyone know what it was called? Hubby went from 15.8 to 11.2 in the first 4 weeks and really could use a boost. Doc wont consider rescue until below 10.

[Mister beagle bailey]

I read your list of sxs for the procrit.  Most of the sxs are the same as the ones we have with the hepC meds.  It's a choice you will have to make but I have not seen any extra sxs from being on procrit.  For me the bottom line is as long as the virus is killed and gone I'll keep taking the procrit to the end.  All meds have sxs and it has to be whats important to you, killing the virus or not taking the procrit and still have the virus.  You have to to what's best for you.

Beagle

[NYgirl]

Exactly - those are the exact same sides as the treatment LOL.  When I looked at the sides for my thyroid THEY were the same sides~ I imagine if you look at the sides for cancer THEY would be the same sides too!


Beagle said:  killing the virus or not taking the procrit and still have the virus.


I agree that is what it comes down to in the end - nothing short nothing more.

Chris I just don't understand at all why you are so afriad of procrit when you are on Interferon and Riba but if you can overcome this fear you will find that you will be so much better you will thank the day you didn't stop treatment (lower to 600???)

I myself do.  I've not had one problem with the Epogen AT ALL except it made me BETTER :) and ABLE to continue treatment.

[friole]

Brother is clamming - lousy prices this year, and beginning to get the traps ready for lobstering -- only does day trips now, not the long hauls.  Down time, works on gemstones and reads a bunch.  That is my brother in a nut shell.  Cool guy, and sort of a hermit.  No TV.

As far as all of those Procrit side effects go, maybe I get muscle aches.  Not really sure, but I think maybe so.  I don't have any of the others, and believe me, the benefits outweigh the side effects.  

Kathy

[can-do-man]

Mind also started out at 17.5 and after 6 weeks it went to 12.5 After a couple weeks got used to it and it has stayed there. Even had to up the riba to 1400mg a day. My hepo won't order it till it gets close to 10. Not  many will at 12.5 Hang in there guy. Best to you

[Chriskid]

BB/nygirl--This isn’t a question of stopping.  It’s a question of strategy.  Reduce Riba until I feel better (maybe a week or two) then take it back up as opposed to more drugs in my system to counter act.  I’ve never been on any kind of long term medication before so the whole concept is repelling.  I’m having a problem buying into the Procrit sx’s not being so bad.  Everybody gets affected differently.  I haven’t decided against it just weighing an option.  Then there’s the whole problem of begging Doc’s to give it to me.  Hell there’s no guarantee I can even get.  That leaves the options of reducing or possibly ending up in the ER. And again,long term effects??

Friole-I wouldn’t want to be out there working shellfish without a TV.  Been thinking of putting some traps in the Cape Cod Canal myself.  But that will have to wait until my energy is back.

Thanks folks for your help.

[NYgirl]

You seem to be getting most of the same exact words of advice from everyone.

TRY and hang in there - at 12.5 I don't think they are going to authorize it from the insurance company = at 9 my insurance STILL gave me hassles. FOOLS.

Anyway I wanted to say hey cancan - I was wondering where you were hiding.

[bobbyullc]

sorry about your hgb. i think the fatigue i experience is the worst part of tx. my hgb went from 16 to 13.5 and i feel it. the good news is at a stage 1.1 you have options i do not have at 3.3. my doctor said he thinks 2 years for the new wonder drugs which i think is optomistic but encouraging. hang in there you may already be svr.
bobby

[can-do-man]

i've been here, you just ignore me.:(

[can-do-man]

IF you do reduce i would only go to 800 a day, that should help alot. Like you said at being only a 1 time is on your side.
Our you on weight base? and if so has your weight droped much to where a reduce would still be weight base?

[Chriskid]

My idiot GI prescribed 800, he ain’t got a clue.  I took it up to 1000 after a month.  I’m currently at 160lb down from 175.  I think that puts me in the 1000 category.  I think you’re right, if I’m going to reduce taking it back to 800 for a while would be my first stop.

And yes, part of the whole decision making package must include the current state of my liver.

[NYgirl]

I'm 5'7 and 117 pounds right now - and I take 1,000 (to 1,200) a day so 800 would be better than just 600 if you absolutely for some reason won't consider the Procrit.  I mean at your weight 800 would be really low as it is...

I don't think you'd have a shot at getting it (Procrit/Epogen)right now anyway so it's really not much of an issue - unless the doc could do it some how special - but you are very far from in the 9s so it's probably a mute point anyhow.  I don't see the insurance authorizing it unless you are UNDER TEN - they make people who desperately want and need this drug wait it's so horrible to have to read "I am 10.1 why won't they put me on..."

Still - this shot is such a little thing compared to other meds (the sides) I am so curious why you don't want to take it?  I don't know anyone who has had any problem at all from it and it does MAGIC it really truly does.

Sign me Curious George

[Chriskid]

I think it finally hit me a few days ago that this s**t is trying to kill me.  I guess I’ve got a healthy paranoid fear of any kind of drug at this point in the game.  But I’m going to hang in just bit further and see where it goes.  Day by day right?  

Appreciate your tenacity.

[can-do-man]

Biting yourselfs while eating? Might i suggess using a fork?

[NYgirl]

Believe it or not I DO know how you feel.  It's just this one particular drug wellI feel like it saved my life.

I can't even explain what happened to me when I had that drop. I just can't put in to words how unsure I was that I was literally going to live, I've almost died a few times in my life for real...you know like in ICU "we don't know the next 24 hours are critical" and it felt like THAT to me.

So when this magic stuff started to WORK and work as well as it did for me - and I felt BETTER man oh man.  I would NOT have made it through treatment...if I had cut the Riba in half even without it.

I was going to quit, in fact it is the ONLY thing that I think could make me REALLY quit at this point (I mean heck the meds killed my THYROID and i'm still taking them) - but I listened to the guys in HERE and went with THEIR advice and decided to try it.

You see I was sort of in the same boat - that is why I'm encouraging you as hard as I can. Cause I HAVE been there. And I am SO GLAD I listened to those who had come before me and knew better.

I am a very stubborn girl sometimes...but so are the people in here.

Best of luck whatever your decision is Chris!

[can-do-man]

I am a very stubborn girl sometimes.......... No not you. stubborn isn't you.

Still the problem remains there are very very few doctors who would order procrit at that high of hgb. They have to cover their ass to. I know you will ignore me.:)

[Algernon]

When my hgb dropped to below 10 (and I was really sick from it), my doc had me skip just 2 pills total, one each a couple of days apart.  I'm only on 800 anyway.  But it actually had a good effect on my hgb.  

I'm with you on the poison aspect of this stuff.  I never even took birth control pills (or hormones once birth control was moot) because I refused to ingest those "poisons".  I still think that was a smart decision...  Best that I don't start down that path given that I'm 17 weeks into this scene...

[NYgirl]

I know that would be a big problem for him for sure he's not THAT ANEMIC that they would approve it.  Amazing world huh you ARE sick but you are not sick ENOUGH...you feel bad but others have been WORSE so shut up and tough it out!

How absurd it really is.

It just sounds to me like even if he was able to get it (he started at such a high hemo maybe SOMEHOW they could get it through although he's not THAT bad a number really at all (God I wish for a 12 LOL).....he doesn't want it.

I'm so glad I took the advice personally.

Maybe if he just drops to 800 but makes sure he eats a good high fat diet to absorb the riba but not take too much it will level out.

What a mess this whole disease can be.

(PS Why you fighting with me I am not THAT stubborn why I've certainly met worse!  Aka LOOK IN THE MIRROR!!!  ;-P

Wise guy. Mind your bee's wax or I fit you with some very pretty shoes and drop you in the East River!

And you know you don wanna mess with me...crazy Eye-talian girl from New Yawk!

[can-do-man]

god your so sexy when you talk that way. And its not even costing me 3.99 a minute. LOL

This hcv has no reason to any of it. Like i said i started at 17.5 and went to 12.5. More fagtiue but used to that. then they upped me two 1400 and at last cbc it was still at 12. I think its cause of you though. Keeps by blood pumping

[NYgirl]

LOL so being a stubborn blond Eye-talian comes in handy for something at last! I knew it would finally pay off~~:)

17 to 12 is such a big jump.  But it's funny, I've gotten USED to being in the 10 range and at first I thought I was going to DIE around there you know?

I guess it's the same thing 9 to 15 (6 pt drop) or 12 to 17 5 pt drop).  Right now I only have a 5 pt difference really and it's not impossible to live but it was so gradual my body adjusted to it I guess or something.

Anyway trying to say - are you able to function ok in the 12s? It seems to me that our bodies DO seem better able to handle the anemia later on if it's gone down SLOWLY - which MIGHT be what ended up saving Beagle (thank GOD)

I really think it's the speed with which it goes down that messes up our ability to handle it and makes us "crash".

[can-do-man]

Anyway trying to say - are you able to function ok in the 12s?

Function ok yes. Can i tell the difference YES

[Mister beagle bailey]

Hi guys,

Can do said: Are you able to function ok in the12's?

Well I'm at 7.6 and still able to function.  I don't think there is a problem for you all.  Can do has been MIA for the day I see.
What's up with you guys, any thing new?

Beagle

[can-do-man]

How ya going today? ny girl ask me if i was still able to function at 12 going from 17.5 I was just answering her that yes i can but can tell the difference. Don't think i could or would want to at your level

[skydiver1013]

I hear you, the honeymoon is over. My Hgb hit 11 today starting from a 17 base, was at 16 two weeks ago. I take 1000 mg of Riba everyday and shot number six tomorrow. I have a good GI, my blood is checked every two weeks and they call me with the results the next day. I gave a blood sample yesterday and they call me today and put me Procrit, it’s a injectable kept in the frig.

I am close to your story,

50 yrs old infected 30 yrs
G 1
Stage 2 liver damage
Currently in wk 6 TX with one hell of a long way to go.

Hit me like a ton of bricks. Everything is a effort. So now I get two shots a week and my blood is checked once every week. I hope its gets better, I am only in week six tx for crying out loud.

[amirtracy]

I'm right in front of you w/ 9/48 under my belt. I'm in agreement too that the end seems soooo far away. I'm same stage, same grade, 40 yr/female. Sx's have been bearable but barely sometimes. Hang in there. We'll get thru it together....tracy

[Chriskid]

I assume you’re a jumper:

I went to school at Emerald Coast Skydiving in AL.  Got about 50 jumps logged before I went into business and had to give it up.  Man…when I get through with this I’m getting back into the sport.

Hang tough my friend.