Jump to content

PROCRIT!!!


Sunfish
 Share

Recommended Posts

i am SO excited :o i realize that it may or not end up helping me, but since i last saw dr. grubb in early november and we decided to give Procrit a try i've been - quite unsuccessfully - trying to find a local doc/hospital willing to work with us and give it a go.

i had an appointment with a hematologist this morning and - i'll spare you all the details, including the fact that up until this morning at 8am they didn't yet have enough of my lab records to say that they'd definitely see me. but....several hours later, after discussions & more blood work at the hospital and the like.....i am officially on Procrit!!! i actually got my first shot before i left!

i actually got teary-eyed when i was leaving the hospital b/c i've been having to fight SO hard with so many people about this and so many other things these past few months that it was almost a shock to have something come to fruition.

i'm the kind of person that isn't happy with sticking with the status quo. i realize that i'm not likely to ever be the picture of health but until absolutely EVERYTHING is exhausted i'm not willing to settle with the degree of limitations i currently have. and lately there have been so many doors closed that i've been more than a bit frustrated.

so...it's nice to have something happen....such that i feel i'm at least actually giving something a shot (hehe...no pun intended). and as the hematology dept is in the cancer center everyone was so nice...there are recliners in the waiting room, there's a lab right there so when they wanted labwork today it was taken & results were back in ten minutes, and the nurse who said she will be "my nurse" gave me her number with the directive to call her ASAP with any problems. i'll go weekly for shots & every other week will have blood levels checked with limits that i'm not allowed to get above (or we'll have to stop). i'll see the doc in 6 weeks to check in.

i'm trying to guard against being too hopeful but am excited. and you all will be the first to know if (when :) ) i start feeling like a new person.

:( melissa

Link to comment
Share on other sites

Wow! I am so happy for you. It give me hope with my iwn fight ti get iv fluids. It nice to hear that they finally are giving you the shot! I realy need to hear this today! Thanks for the good news. I hope it works for you! :(

Amy

Link to comment
Share on other sites

Hi Sunfish,

congratulations!!!!!!!!!! I am so very glad for you AND I'm so very proud of you that you held on and finally succeeded. I really hope everything goes well for you. I can imagine how excited you must feel. Keeping my fingers crossed for you,

Corina

Link to comment
Share on other sites

Hi Melissa,

CONGRATS!!! You seem to have the same idea as me....not to give up on something, w/o a fight at the very least. Are you anemic or is the Procrit for something else? I hope this helps you out alot. Seems like you have tried lots of treatments. I guess it just takes time to figure out what helps...Goodluck and keep us updated on your progress!

Jacquie

Link to comment
Share on other sites

Hi,

I can understand how excited you are about trying the Procrit. Dr Grubb and Dr Goldstein gave me a script for it 3 years ago and I still have not found a doctor here to give it a go. I have seen at least 7 specialist so far. I am just about willing to stop asking for that med because I seem to be hitting a wall all the time.

Keep us posted on your progress.

Link to comment
Share on other sites

thanks for the group cheers & support. i know you all "get" how excited i am to at least be able to give this a try. and no rash yet which means i'm probably in the clear there....a good thing b/c i tend to get rashes from "everything."

i'll definitely keep you all posted!

:) melissa

Link to comment
Share on other sites

Melissa,

I'm so happy for you! I know this has been a long journey with this med and that you've experienced lots of frustration trying to find someone to prescribe it.

Thanks for keeping us posted,

Lisa

p.s. I hope to start Procrit in the next 2 weeks as my family physician here in KY decided to "give it a whirl".

Link to comment
Share on other sites

melissa, i am so happy for you, i hope the shots help, ernie, i know exactly how you feel, i have hit a brick wall too trying to get a local doc to give me the shots, they think that procrit is only for cancer anemia, and cant understand that there are other uses, congrats melissa and wish you all the best!!

radha

Link to comment
Share on other sites

Guest Julia59

Melissa,

That is so great! I know you have not been happy with the physical limitations you have had to deal with lately-----certainly not fair. I know a young woman who was on procrit----she is doing so well now---actually back to work full time. I have not heard from her in a while, which is good in a way, because that means she is doing well.

Good luck with the procrit!

Julie :0)

Link to comment
Share on other sites

Congratulations on your success!

I take Epogen injections and feel so much better. The combination Epogen & IV Iron give me energy & life back. Speaking of which, do you know what your iron level is? I took Epogen for nearly 4 months without any effect and it was because I had nearly ZERO iron in my blood. And Epogen doesn't work without adequate iron.

Did you experience the severe pain with your injection? If you did you can ask for a prescription of EMLA cream to use 20-30 mins before injection, It helps a lot.

Link to comment
Share on other sites

Hi, I am wondering why is it hard to get doctors to give some of you Procrit???

Link to comment
Share on other sites

I'm so excited for you Mel...I hope the Procrit works for you!! :blink:

Jacquie,

Procrit's "intended use is to increase RBC count in cancer patients following chemo..it's very expensive and insurance co. tend to cover it only under this condition.

Recently, however, more and more people with POTS who have clinical proof of low blood volume are being given the opportunity to try it. It's exciting b/c several of the folks on the board have had a lot of success with it.

Link to comment
Share on other sites

thanks to all of you for sharing in my excitement :)

lisa, glad to hear that your doc is willing to give it a go too...keep us updated!

steph (briarrose), you're definitely one of the one's i'm hoping to follow in the footsteps of in terms of procrit success. the shot sure was a whopper though....ouch is right. and for a good ten minutes after too. i can deal with it though as it's short lived & i'm so excited to be able to be giving it a go...but definitely much more of a stab than my B12 shots. about my iron levels, i'm pretty sure the doc (hematologist) did them along with the rest of my bloodwork but i'll definitely make sure when i go back this coming week. i also know i've had them checked in the past several months and they've been okay (unlike so many of the rest of my blood tests). thanks for the reminder though & for looking out for me!

jacquie, like war eagle said insurance coverage is an issue for many re: procrit. and it's only FDA approved uses are the one that she she mentioned (cancer patients with low RBC counts b/c of chemo), in kidney failure, in some other anemias severe enough to require transfusions, and in certain high-risk patients preoperatively. for me & for some others though insurance was not actually the issue. my insurance - from what we've been told thus far - will pay as long as i get the shots at the doc's office (as opposed to giving them to myself at home.) instead i had trouble finding a local doc who was able & willing to monitor & administer the treatment b/c of the possible risks/liability.

it's definitely not a treatment without risk though if monitored regularly it shouldn't be nearly as much of an issue. not all are willing/able to do this though. and while dr. grubb wanted me to do it and sent letters to various docs he needed me to have someone local and none of my docs at cleveland clinic could do it b/c the clinic as an institution forbids its use other than for the FDA approved specifications - no exceptions - so that it wasn't up to my individual docs. many docs get hung up though about administering procrit to someone whose starting hematocrit is not clinically below-normal b/c generally bringing it to "normal" is the goal of treatment; thus they don't know what to do with someone who starts as normal & are even more scared of potential risks of blood clots, stroke, etc. lack of effective treatment isn't without risk either though, most concretely evidenced by the fact that i have titanium in my neck due to a black out down a flight of steps. thus since i've tried almost all the meds out there....we're "at the next level" in terms of what we're trying.

:blink: melissa

Edited by Sunfish
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...