Hit The Wall

[Chriskid]

The honeymoon is over.  Hgb hit 12 one month ago.  That

[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

[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

[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

[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