Procrit

[KAMO]

Last week my red count was 10 before I took my shot on Fri.  Since the shot I know my counts have fallen again.  Shortness of breath, dizzy, concentration next to nill.  I had blood work done yesterday and am waiting for a call to see if I can get Procrit or something today.  I've missed 2 days of work and can't do anything but sit on the couch.  Does anyone know how long before Procrit helps?  My nurse is out until Thursday, but I don't want to wait that long.  If someone else at the doc. office can do it great otherwise do you think I could get it at an emergency room??

[Algernon]

My doc told me 2-3 weeks but I'm on Procrit for the 2nd time now and here's my experience.

First time, it started working within 10 days and I felt great in two weeks.  My doc had me take iron supplements which helps the Procrit to work.  Not everyone with HepC should take iron though.  

Second time, it took about three weeks to work--and I wasn't taking iron the first two weeks. Don't know if that made a difference or not.

The Procrit will save you.

[52TELE]

Hi Kamo. I have had three shots of Procrit now over the last three weeks , and I noticed yesterday that I was starting to feel human again. I really think it's the Procrit kicking in.
I guess everyone is different , they certainly are when it comes to any other issues with this diseases.It seems no two people are alike when it comes to sx.

[KAMO]

I have a call into the doc office and am waiting for someone to call me back.  I know I need to get that shot ASAP.  This is my second time treating and the first time I didn't get Procrit.  The doc cut my meds instead - if only I knew better at that time!!  The sooner the better before I end up on the floor.  Once I get this taken care of I know I will feel better and have the strength to get all the way through this s**t.

[KAMO]

I have a call into the doc office and am waiting for someone to call me back.  I know I need to get that shot ASAP.  This is my second time treating and the first time I didn't get Procrit.  The doc cut my meds instead - if only I knew better at that time!!  The sooner the better before I end up on the floor.  Once I get this taken care of I know I will feel better and have the strength to get all the way through this s**t.

[Hepkitten]

My husband was at 9.3 his last test, just got another test and I'm waiting to find out what the deal is, if it takes awhile to kick in we may not be able to go on vacation...:( He looks like something out of Scooby Doo's haunted house or something. And getting very clumsy.

[KAMO]

I just got a call back from my Doc. - personally!  He's calling in the prescrip for Procrit right now. I should have it by Thursday.  I think the problem was that it fell fast.  I was at 14 when I started tx, the following week it went down to 12, the next week down to 10.  With that pattern, this week had to be below 9 at least.  I can deal with 10 that was fine....I was ok until 2 days after the shot.  I could really feel it between Monday night and Tues.  At least today I can stand, breath and think a little better.  

I can see why people would want to quit tx.  The anemia is the worst part. At least for me so far. It really takes away your independence.  Can't drive, cook, walk, speak...it's a good thing I know it will pass and with the help of friends and family we can laugh at how stupid I am right now.  

Thanks for the input and hopefully I will be upright soon....

[FlGuy]

When you get the blood work results back look (or ask)specifically about 'hemoglobin' level. It may be abbreviated 'hgb'.  Do you know what your 'hgb' was before starting, and levels since you've started?

[Mister beagle bailey]

It took 6+ weeks for the procrit to kick in.  With your HGb only at 10. before treatment was waondering if you suffer from anemia like me?

Beagle

[NYgirl]

You just have to wait for it to work there is nothing else unfortunately you can do.

This is why we always advise checking CBCs WEEKLY during the usual period when people get the anemia.

Once it kicks in you will be amazed at how well it works.  

When it happened to me I had a DRASTIC drop in a little over a week - so the every other week CBC really missed it (i went from 15+ to 9 in just over a week). Physically I was devastated, kept fainting whenever I tried to stand for example....

The guys in here advised me to HANG ON.  The anemia is one of the biggest reasons people quit tx - they just don't believe it will ever get ironed out it's too painful they think to wait so they quit.

It DOES get ironed out.  It takes a few weeks for the medication to go in and have your bone marrow start growing new red blood cells.  It's not just an energy booster type shot it has a LOT of work that it needs to do to produce more red blood cells for you.

Once it does - you will be fine.  I was on Epogen 40,000 x 2 and it brought me up REALLY well.

Now I'm hanging around 10.5 - 11 and I am FINE.  It's not just the number but how fast you drop and later on in tx a 10.5 or 11 won't seem bad to you at all believe it or not!

HANG IN THERE!  IT IS WORTH IT!

[friole]

I am so glad your doc has come thru.  Yes, I believe the anemia is the worst thing on tx -- unless you have the really really bad stuff (like losing your thyroid or something.  I started Procrit when my hgb dropped into the 10's.  I felt like it started helping within days -- maybe that was mental.  It will help tho, and I am glad your rx is in.

[Hepkitten]

My guy is at 8.2 hgb and 24 something hemocrit and they are still giving me the runaround. I think "the rage" is contagious!

[lilmoma]

Hey there.
My doc and I already had a plan in place when I started tx.
When the labs show my hemo goes down to far, the procit is overnighted to me.
It really went that smoothe too. I knew I had been feeling pretty bad, and after the nurse got my labs back she called me to say that they were overnighting some procrit out to me. I did my 4th procrit shot on Monday, and I am just now feeling like I have a bit more energy. Nothing to write home about, but anything is an improvement over what I was feeling.
I think it is very important to communicate with the doc Before startin,...you dont need any additional surprises.
Ask about everything. My doc also got me on some sleep meds,...again, they are not great, but I would not sleep at all if I was taking them.
PS  My doc says "anytime hemo gets down to a 10, it is time to starting thinkin "rescue drugs" mine got down to 9 before I got my stuff.
lilmoma

[NYgirl]

Hep

Please don't try and go on vacation.  There is not NEARLY enough oxygen in your hubby's blood.  Not only will he risk fainting while driving or on stairs but it is hard to breathe and walk and you are just exhausted.  Quite simply the primary thing goign on in your red bloods is to bring the oxygen to your brain right? something like that --- it is horrific feeling that feeling that he is in. He NEEDS Procrit or Epogen if he is an 8.2 he is CLOSE TO NEEDING A TRANSFUSION MOST LIKELY so I can't see why you'd be getting a run around.  Not at all. If the doc doesn't believe in rescue drugs I'd think he would have at least cut his meds sharply (but that is the LAST thing you really want to do).

KAMO

My hgb went from 15+ to 9 in just over a week.  It's not JUST the number how low it goes but how FAST it drops down. The bigger the drop the faster - the less your body can handle and manage it.  Now I have remainned in the 10.5 - 11 range for the past several months and feel just FINE because on the Epo 2x a week I went too high and then on once a week it's been in that level and dropped SLOWLY.  

The anemia is a real pain but you can't stop tx from it because once it does kick in...it was SO worth the wait!

[Hepkitten]

I got in touch with the docs office and they said he can probably get Procrit by mid next week, so most vacation plans are off. He said he feels better just knowing he can get it and we can go away for a week and start when we get back but I would like to make sure he starts ASAP. Dr. cut the riba down as well, hope that helps. Well at least I have a week off from work to take care of him and hopefully get some much deserved rest for myself.

[MissMiss]

Sorry to hear the very low numbers for your husband.  Hope it turns around quick.

As far as vacation, I had two good weeks and my husband decided spur of the moment to take a short two day trip.  It was great, I really enjoyed it.

But, I got home and have been sick ever since.  Now on antibiotics and in bed a lot.  My HGB is below 10 now and my platelets are falling again.  I figure I got around a bug that I am not used to here at home and it bit me real hard.

When we are so immune depressed on treatment, I think you should really think twice about exposing yourself to something new you may not have some natural thingies in you to fight it.  

I'm worried because the doc said something about tx stopping if this or that happens.  Whoa Nelly!   Can't have that happening when I am at 34/48!

Something to consider.

miss

[beamishboy]

immune depressed is sooo right...rite now a vacation is 3 hrs of uninterupted sleep& amn empty bladder-hurrah!