Epogen Approved!

[Rachel]

I received some good news from my insurance - they approved the prescription for Epogen! I was very pleasantly shocked! I've had a lot of difficulty getting meds approved in the past. I was expecting my insurance to deny coverage for this med too considering that it is significantly more expensive than other meds they have denied. However, the approval went through! I now have the med in my fridge and will begin taking it next week!

Dr. Grubb told me that Epogen is the last med left for me to try. Even if it doesn't work, I'm very glad to have the opportunity just to try it and see if it helps.

For those of you who have been on Epogen (Procrit), how long did it take before you knew that the injections were helping or not helping? I'm just wondering how long of a med trial this will be.

Rachel

[yogini]

Rachel, that's great news. I hope that it helps - let us know how it goes!

[flop]

Congratulations Rachel,

I will be praying that the Epogen gives you the symptom improvement that you are hoping for.

Flop

[DancingLight]

Gosh darnit! I wish I could remember how long they tell you to see until it works....is it a month or three months? I'm not sure! It just depends too how much your dosage is and how your blood work goes (mine kept going too high). It will take some time and it will also be gradual.

I'm glad that you got this med approved. I, too, had no problem getting it approved but they won't approve several other much less expensive drugs! It is a puzzle to me!

Keep us posted,

Emily

[Ernie]

Hi,

I found out the next day that Procrit was helping me. I have been on it for 2 years now and it is still one of my most important meds.

Congradulations for your approval.

[dizzygirl]

that is fabulous! im so happy for you! I really hope that this helps you.. i really do.... gr. G wanted to try me on procrit.. but my insurance wont pay for it.. how'd you get it approved?

BIG KUDOS girl! please do let us know how you are doing on it if it helps you

[Poohbear]

Yippeee! I am happy for you that you got approval to try this and I will pray that you see some good results from it.

[Rachel]

Linda,

My insurance told me that Epogen was on their formulary, but that it required a prior authorization. I've been denied for other meds that required prior authorization, but amazingly this one went through on the first try. My doctor sent in chart notes, a list of all of the medications I have tried and the results (or lack thereof), and stated that there are no other med options for me to try at this point. Somehow it worked.

I'm sorry your insurance won't cover the med. That's tough. Have you tried a prior authorization or an appeal? Or do they just not cover it no matter what?

Rachel

[AJVDK]

Congrats! I am happy for you! I am thankfull that my procrit (epogen) is covered. I been getting weekly injects for 1 1/2 years. I know its help keep my blood count up better. I hope it helps you!

Again congrats!!!!!

[persephone]

Hi Rachel,

I've been on this since July 06, so 18 months now. It took about 6 weeks to kick in for me. The Doctors will need to do weekly bloods to see what your haematocrit and haemaglobin levels are like; but nce it works, believe me you will feel the difference.

I went from syncopal on sitting on the day of admission to 8 weeks later cartwheeling out of the ward when I left to come back to University.

It was my last option too- which was scary, but it *really* works!

:-)

[flop]

Wow! That is an amazing difference from one med - I hope Rachel and any others who try it get the same benefits that you do.

Flop

[corina]

congratulations rachel!!!

corina

[Mrs. Burschman]

Good luck, Rachel. I hope it helps a lot!

Amy

[ajw4790]

Congratulations! I hope that you find relief with it!

[mallen1]

Rachel,

In terms of increasing your blood count so that you feel better, epogen takes 4-6 weeks by most accounts. It acts on the very beginning of the RBC synthesis cycle, and as such takes awhile. It's thought to stimulate stem cells in your bone marrow to differentiate into red blood cells. That's a bit theoretical and sketchy, but it definitely works on the bone marrow. Many people feel better much sooner than that and no one knows why, but in terms of increasing your hematocrit (RBC count), allow yourself a month.

Take Care,

Mark

[Rachel]

Thanks everyone for the support and information.

Yep, we'll be doing monthly blood work while I'm on Epogen to make sure that everything is a-okay.

Persephone, that's great that Epogen works so well for you! I'm glad you found your magic med.

My first injection will be on Tuesday next week at my doctors appointment. I'll keep you all updated on the med trial.

Rachel

[flop]

Hi Rachel,

I think that in the UK you get your blood tested every week for the first month or two until they know how your body responds to the Epogen and adjust the dose for you. Will your doctors be doing regular tests to start with? I haven't met anyone taking Epogen for POTS but I do know older people with chronic kidney disease who use Epogen to keep their blood levels up (you get anaemia with severe kidney disease).

Keep us updated,

Flop

[Rachel]

I was directed to have blood tests once a month, though the first one might be after 3 weeks. I'll be starting with a low dose of Epogen, so maybe that makes a difference in how often blood is tested at first. We'll titrate up later if need be.

Rachel