Question For People On Procrit

[futurehope]

Have you ever taken florinef? Did it work for you? Are you still taking it while on procrit?

I've come up with these questions because I am now aware via blood volume testing that I'm mildly hypovolemic and have a "mild deficit" in red blood cells and blood plasma.

My doctor suggested Florinef. I guess this would increase total blood volume, but I don't really know what it would do for increasing the number of red blood cells (which was the lowest count of the three counts I had taken).

So, I know procrit is supposed to increase the number of red blood cells and I was wondering if you had ever taken florinef to increase your blood volume and did it do anything?

Thanks.

[Jaime]

The procrit should help with increasing red blood cell production. I am on florinef and procrit together and it has helped tremendously. The combo of drugs that I am on for POTS is procrit, florinef, mestinon, and zoloft and once Dr. Grubb added the procrit it helped so much it actually made my POTS a lot easier to handle. Now my biggest problem is the EDS and I only notice the POTS as bad as it used to be when the weather is hot, menstruation, migraines, or other meds that may make the POTS flare up.

My doc has me getting weekly CBC to check the thickness of my blood...if you have to do the same you should ask the lab people if they will draw the blood from a finger poke because I have developed a lot of scar tissue in my veins from this weekly draw. Some labs will do it, but others won't so now my doc is letting me get the lab every other week.

Good luck...the procrit has been a godsend for me...I only wish that everyone with POTS had access to it and the same amazing results as me!

Jaime

[futurehope]

Jaime,

Treatment wise you certainly sound like you are getting what I could use, namely higher blood volume via the florinef, and higher rbc's via the Procrit. I'm really happy to hear how well you are doing.

I'm just curious, had you EVER been tested for whole blood volume and red blood cell volume (in the same test)? What were your results? Were you mildly hypovolemic or moderately hypovolemic? How bad WERE you without these treatments?

The reason I'm asking is my PCP does not think I should be starting the "steroid" just yet in my life. She thinks I'll eventually need it but I should hold off as long as possible.

[briarrose]

I'm not too excited about taking Florinef, I do it because the doctor's tell me to. Florinef is suppose to help retain salt and keep your blood pressure up.

Epogen is totally different and it is used to increase your red blood cells.

I'm all for Epogen injections as it has changed my life for the better.

http://health.yahoo.com/drug/d00608a1

Good luck and if you have any questions please PM me as I haven't had time to cruise the boards over the last couple of months.

[AJVDK]

I am taking procrit and it does help. The big thing for me is we are still not seeing a large inprovement in my hemocrit (Sp) going up I am sitting right now at 36.8 I have not had an injection in 2 weeks. I was getting 10,000 units weekly. I not waiting on a lyme's test to come back, and doctor waiting on reeral, but I am going to have my next shot on tuesday ad long as all my blood work comes back ok. ( Long story)

As for florinet I was not able to stay on the med due to all the water I was retaining. It work i guess alittle to well in me, and my B/p did got up in fact my normal is around 90/60- 80/50 it when up to 154/94 they took me off of it. But there are many that have had good luck with it.

THe big thing is that each person reacts to meds differently. I wish you the best!