Meds Here, Said I Couldn't Use 'Em

[alagirl]

Yeah.  Right.  So the nurse with medfusion (who was supposed to call two or three days ago) called now, as my meds arrive, to tell me that she can't come to my home and see me til next FRIDAY.  Because.  She is going on vacation in Denver.  And.  She still isn't packed.  Right.  A week from today.  And I get this, CANNOT start my meds til she does.  What, I'm just supposed to sit there and look at them, knowing that getting them into my system sooner could help in my case of early detection HCV? Sure.  

I called medfusion and said, my father (really its my sf who lives in Austin so it wouldn't help much - my father doesn't know jack about medicine) teaches paramedics and he is going to help me with it.  I am not waiting.  I will fax you the paperwork or you can come out and pick it up at your leisure.  The girl at the pharmacy decided better than to quibble with me about it.  She was actually very nice.  The nurse manager there ok'd me watching the little dvd and then starting.  Monday I have to call my doc and get a lab schedule.  I've never been so excited to simulate the flu in my own body! lol

For the girls, kind of a cute little kit thingie it comes in huh?  Would be nice if they had 'em in pink though.  Ah well.  I love how they have the dose tray so you can pre-measure your doses.  It's like a little foreshadowing that you just might not be able to remember that in the coming days while on the meds.  Pretty Funny.  I am SO excited!!! LOL  

Remind me, when I post up her cryin' later on.  I WANTED this.  Asked, begged and demanded it.

[alagirl]

That is so sweet!  Thanks.  Yeah I am really happy to get started.  I really wanted to get in with as few weeks past my exposure as possible so I estatic to finally be treating with the rest of you. ;)

[alagirl]

Thanks.  I appreciate all of the advice a lot.

[jmjm530]

Thought you were kidding although many do have a noticeable reaction to the first injection. Many don't have much of a reaction.

Should probably add that many people don't have bad sides at all during treatment, and hopefully you will be one of those.

That said, anemia during tx is a two-edged sword. On one hand, getting anemia makes you, well anemic -- but on the other hand, getting anemic on tx means that the ribavirin is being absorbed well and doing its thing.

In fact, some studies suggest that the degree of anemia may correlate with SVR, i.e. those who get more anemic during tx have a better chance of being cured.

As someone not new to injections, testing, and anemia, you have somewhat of a head start over most who treat. I think and hope you will do very well.

-- Jim

[alagirl]

my son's blood is always very rich, over the top of the limits.  He gives blood when they do drives here and he says he actually feels better after getting rid of some.  ironic.  

[alagirl]

weird huh?  You can definitely tell the difference when your body starts getting low.  I almost know how my hgb is going to come back before I get it.  

[alagirl]

did both.  The first dose of riba and the first pegasys shot.  I'm kidding about the sides though.  I figure I'll start feeling achy sometime as the weekend goes on.

[motheroffour]

Keep us posted ala, my H did just fine on treatment, but he did feel achy but it was about 9-12 hours post shot.  Also it will be interesting to see how you "go" with your hgb.  I have been anemic since I was a young girl I think I was about 5 when I was dx... my father's anemic also.  My hgb on a good day is less than 10, but I'm very, very used to it but I can feel it if it's lower sometimes. And you never saw nurses scramble so fast as after the birth of each of my kids and they got my CBC results LOL.   My H went  through the entire treatment with hemo that dropped from 15 to  slightly above 10...some on this board are just dragging butt like that...others like H and I seem to do just fine and we''re both pretty active athletically - I taught tennis for years with this anemia thing been living with it for over 45 years now.  Everyone is just wildly different. You're probably so sensitive to how you feel that you'll be able to regulate yourself.  I know I am as is my father even in old age.  Good luck!

[jmjm530]

By "dose" do you mean your first injection or your first dose of riba?

[alagirl]

Ha.
Hey, I'm still feeling ok six hours after my first dose.  that means I won't have any side effects right?  
j/k

[jmjm530]

ala: the anemia thing by now though is just like something I do by rote
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Well just look at tx as Home Coming week then :)

[alagirl]

My ducks are always all over the place.  My life is like herding cats.  the anemia thing by now though is just like something I do by rote since I'll have it likely forever pretty much.  

[jmjm530]

Our last two posts crossed, but generally there's a 2-3 week lag time between taking riba and a hgb drop. Approx the same lag time between taking epo and a hgb spike. My tx records are somewhat buried, but I believe I didn't get into trouble until week 3. Keep in mind I started some very high dose riba at week 2, well over SOC.

-- Jim

[jmjm530]

Misread your current dosing. Lower than I thought. You still have 24,000 units (or more) to play with even at your higher, 16,000 unit dose. I suppose you could start with 16,000 and then play it by ear. A hematologist would probably have a more precise formula although in reality we all not only react differently to ribavirin both in terms of hgb  drop, and equally important in terms of how that hgb drop makes us feel. You will know soon enough but sounds like you've given this plenty of though and have your ducks in order.

-- Jim

[alagirl]

too late on the riba lol - but I can opt into a couple, three more vials tonight and then call the hematologist on Monday.  I just injected 16k couple days ago.  How quickly did your blood count go down on the riba.  From the beginning or?  

[jmjm530]

Standard protocol for Procrit (epo) in treating henmolytic anemica on tx is 40,000 units/week. Since you're already on what sound like intermittent dosing -- and since there's approx a 2-3 week lead time between epo dosing and a change in hgb -- you might consider discussing with your doctor a pre-emptive attack, i.e. doing at least 40,000 units starting with your first riba dose, or very soon thereafter.

-- Jim

[alagirl]

I'm not at a fixed dose.  I basically am given free reign as long as I'm not screwing it up.  So I use it 12,000 - 16,000 units at a time or as I like to look at it.  About a box a month.  LOL usually every week to week and a half dependent upon my bloodwork and retic. count.  Sometimes I can go two weeks.  

I'm going to go get another cbc tomorrow morning actually, should be ready Monday.  I have two gp's here in town.  One is semi-retired but is the best diagnostician I've met.  He does most of my meds.  The other I go into for my bloodwork.  Everybody keeps in touch with each other.  We're just a small town here.  In fact, my doc will prob drop by tonight or tomorrow because he owes me money for his cell phone, and he'll bring my son's adderall scrip when he comes.  LOL   SMALL TOWN.  Right.  His cell phone is in my name.  long story. lol

Hemolytic anemias, I think, are much more profound and require much more epo than normocytic anemias involving initial epo production.  So.  What you're saying is true, I may well be moving up drastically in epo usage.  I'm glad you posted your results because I'll want to talk specifically about this issue to my hematologist at UAB.  I do remember though that he was amazed my blood level could rise so well with so little procrit, but then we discussed the various anemias.  He said that his renal patients had a lot more difficulty coming up to level, which is why we'd discussed the long-term epo.  Of course, renal patients are having more, usually, of the opposite problem from hepc'rs in that they can't produce the epo because of their kidneys, instead of having their rbc's destroyed early.  Although it's possible dialysis damages mature rbc's not sure.  Don't know that much about that.  Those folks actually might have both issues too.  

Also, I have never seen this discussed here, but.  It is a possible side effect of using an artificial epo like procrit for your own body to make antibodies to epo.  If this happens you are pretty much sol because your body then attacks it's OWN epo also AND you cannot be helped by procrit and epogen.  It means you are then dependent upon transfusions.  Not a good thing.  My doc here was so spooked about it that after the first year he insisted that I be tested for it.  (he's not my hematologist but an advisory had just come out from procrit and he was insistent.)  I'll let ya know that Johnson & Johnson I think it was, sent an assay kit in like 0 seconds and did the test for free.  I have no problems there.  But.  If anyone stops responding to artificial epo it is something to consider.

[jmjm530]

Just be careful, because your situation is different, and at this point it's all theory as to how your hgb levels will respond to the ribavirin. As to testing, I wouldn't wait for problems before doing weekly tests, I'd do them from the start. And, as I believe "Willing" suggested, you appear to have some play with your dose and still remain at weight-based dosing. Use the safety net if you have to. Are you on a fixed weekly dose of epo now? If so, how much per week?

All the best,

-- Jim

[alagirl]

I still a good bit of room.  My bone marrow is fantastic once the epo actually shows up.  In fact, if I wasn't taking the epo, hard to say what would happen.  I don't think I would die.  Right away.  lol  Although last time we tried it, I dropped consistently and never came up so we've never done that little experiment again.  But I think after my hgb hit 8 or 7 at worst, my body would kick in and at least keep me there.  I hovered between 8-9-10 hgb for fifteen years before procrit- but then it started dropping more rapidly.  Also, it started to wear on my heart a little and cause me to be pretty tachy all the time when it was so low - it was starting to cause permament changes on my eeg.    Oh.  Plus the fact that I couldn't get out of bed.  Yeah.  That was problematic as well.  None of my employers were fond of it.  

The good news is I am extremely responsive to procrit so there is no prob making the cells now.  

What I was going to say is that there is a new type of epo.  It is a longer acting, perhaps a pegylated form or something?  I don't remember the name of it off-hand.  Anyway, people who are seriously having issues and not being helped enough with procrit take it instead.  My doc told me about it a year ago, but I said I'd rather keep doing what I'm doing for now, try the new stuff if I ever have a prob.

[jmjm530]

You know, just thinking. If you're already on Procrit to normalize your hgb, then in a sense you don't have Procrit to fall back on to the same extent that many of the rest of us do. Unless, of course, you're on a very low dose of Procrit. From what I've been told, after 60,000 units/week, not much more benefit in going higher. In fact, my NP told me not all that much benefit in going higher than 40,000 units, although I do think upping to 60,000 made a difference.  Not sure how close to that 60,000 units.week you are now.

-- Jim

[geterdone]

Yeah thought so. No way, but thanks and your welcome. I’m just a tx'er here.  

jasper

[alagirl]

Don't worry.  I'm pretty sure I didn't learn any words I haven't used in the past hour.  Ok.  Dosed up.  And.  Since it came late in the day, I'm going to go ahead and really give myself a kick in the head and take all the first day riba today too so I can be on the same day with everything.  Maybe spread it out four hours apart.

just told my son he's in charge for the weekend.  of course, he knows that means, in charge of doing everything.  he's been well trained.

[jmjm530]

Thanks for clarifying. The problem with the "free little medication thing with the days of the week separated ..." on it, is that often on treatment you don't know what day of the week it is. Come to think, I still don't half the time.

-- Jim

[alagirl]

I got the regular pegasys 180 pre-filled's (4); and the riba at 1000mg day (140 pills)

But they send it all out in this little permanent refrigeratable zipper pack which, is nice I guess if you have to travel with your stash, lol  It's from pegasys and has their logo embroirdered on it.  Its blue.  

And then let's see, I got a free sharps container, a free little medication thing with the days of the week seperated for morning and evening, 800 million pamphlets about hcv and the drugs and how to do everything, including find the secret of life I think, and a whole bushel of paperwork they want me to send back.

It's called the Pegassist starter kit.  Hey, brand loyalty.  Got to admire it.

[jmjm530]

Jasper, that was supposed to be tongue in cheek. Hope it didn't come out any other way. Just curious what she picked up at the pharmacy, because it didn't sound like what most of us get. But, hey, thanks for monitoring my emotions. I'll try and get you on the payroll next month :)

-- Jim