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Started Procrit, lowHGB

by Pauly Boy, Jun 15, 2006 12:00AM
I took my first shot of procrit yesterday,HGB went from 14.5to 11.2 in 2weeks. The other thing I've noticed is an unbelievable shortness of breathe when doing any kind of physical work. That and the fatigue has been the worst of the sx, so all in all that's not too bad. Unfortunately I had to skip golf this past week due to the sx. So I just played a couple of rounds of 'puter golf! I'll take golf a week at a time. Anybody's experience on time in takes for procrit to start having an effect and how long I should continue tx on it? I'm taking my 5th shot today and we drew blood yesterday for a Heptimax test ( along with HGB). How long does the Heptimax test take? Hope I've killed those bugs! Stay strong Y'all... Thanx, Pauly
Member Comments (7)

by friole, Jun 15, 2006 12:00AM
To: pauly
Very good that the doc rxed the Procrit now rather than waiting until your hgb dropped lower.  I think you will see a difference in a couple of weeks.  I strted when my hgb dropped below 11 and really did feel that it helped within a week.  I don't know - the literature says a couple of weeks. I don't golf, but managed to maintain my walking throughout the first 24 weeks of treatment but then dropped off with the winter and energy levels and I suspect, muscle loss.  Hope you can keep up the golf.

by sfbaygirl, Jun 15, 2006 12:00AM
To: Pauly
Great you got the Procrit before you dropped below 10. Did your ins. pay for this? Mine paid for me to get a shot in their office, but I have not heard anyone getting procrit over 11. Good job! Those sx you feel from anemia are the worst!!! I had my shot at 11 and I thought I was going to be in a wheelchair and need an elevator just to climb the stairs to the bedroom.

It took me about 2 weeks to start feeling better (I could walk across the house without stopping for 5 minutes) It works miracles eventually. I have heard it can take 2-4 weeks. Maybe since we both had the shot before we were below 10, it works a little faster.

It has a lot of work to do. If the Riba is causing it to go down, then you take a shot for it to go up, the two drugs are fighting each other, not to mention all the work it takes to build those red cells back up.

Let us know how you got the doc to give you the procrit early. So many here suffer for a long time waiting for the Hgb to drop low enough. I REALLY feel for them and having gone through it, don't know how I could have waited any longer.  

You still will feel short of breath and fatigue for awhile, but when it starts working you will be out on that Golf course again!

by NYgirl, Jun 15, 2006 12:00AM
To: pauly
I hope to God that those red blood cells start to grow FAST.  I tell you I don't even mind taking my shot because I KNOW what a miracle drug it TRULY is.  I started taking mine now every five days because I was at 10.5 which is fine now - but I can tell if I had a CBC it would be probably in the high 9s.

Your body will acclimate in time so that 10 / 11 is fine believe it or not.

Make sure you take your shot when you are supposed to - a big part is taking it so that you MANAGE the hgb...otherwise it will go straight back down.  You must take it all the time now until tx is over most likely.

I've only heard of one other person ever in here who received it over 10 so I don't know how you managed it - must be a very good doc!

Debby

by Pauly Boy, Jun 15, 2006 12:00AM
Actually, the information everyone gave me here helped me to gently urge my doc into prescribing the procrit. Everyone had said that I might have to wait a couple of weeks for the procrit to get approved by insurance company and that usually under 10 didn't get approved. After I met with the doc and we got the 11.2 back , I called and pressed the fatigue, tiredness, shortness of breathe issue. I told him I'd heard about it taking 2 weeks to get approved, he assurred me that he always was able to get it the day after it was ordered. He reported this fact to me with a great sense of pride. I told him I'd wait the week-end and when I called back told him the same sx were increasing. He called in the procrit while I was on conference call with the pharmacy. Along with the need for the drug, I think he enjoyed showing me how quickly "his" pharmacy responded.I showered him and the pharmacy with compliments.Yet again, another sales job real simple.The one thing that I've found great is that he orders everything from 1 pharmacy only, They send everything to me via Fed-Ex, wrapped and iced. Real cool!!!  Kill those Bugs!  Pauly

by Mister beagle bailey, Jun 15, 2006 12:00AM
To: Pauly Boy
Glad your on the procrit.  For me it took about 5 weeks to kick in but I have thalassemia anemia.  Everyone is different, with some it starts to work in 2 to 3 weeks.  My HGB was between 6.2 and 8.0 durning my treatment and I needed 2 transfusions but I made it to the end of tx.  What your feeling is normal when your HGB starts to drop, shortness of breath, etc.  It will get better when the procrit starts to work and your #'s starts to go up, you'll see.

Beagle

by sfbaygirl, Jun 16, 2006 12:00AM
To: Pauly/ All
That is great how you got the dr. to prescribe early!  This is a good thing for people you are suffering with anemia for weeks and weeks and weeks before they hit that 9.8. It makes me mad that people have to wait. The suffering is bad enough on tx, it doesn't need to be worse with anemia for many, many weeks.

I kind of pushed a bit myself for the procrit. Sounds like that is exactly what you did. This forum comes in handy, huh?  

All of you that have NOT gotten relief, remember the squeeky wheel gets greased. Call those docs untill they don't want to hear you anymore!

by lilmoma, Jun 17, 2006 12:00AM
To: sfbaygirl
I am greased, and ready to go!!!!!!!!!!!!
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