Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
Sign in to follow this  
Jacquie802

New Fda Warnings

Recommended Posts

Hi,

I hope this is okay to post, but I saw this on AOL and I know that there are a few people on here who use some of the 3 meds listed, one being Procrit.

http://news.aol.com/topnews/articles/_a/fd...S00010000000001

Share this post


Link to post
Share on other sites
Guest tearose

I am also concerned for those who are on it. I hope they are doing well.

briarrose...are you okay?

tearose

Share this post


Link to post
Share on other sites

Tearose

Sorry, I'm good and am still taking Epogen. Think I've been taking the injections for about 7 years now, along with IV Iron. These are the 2 drugs that have almost returned me to a normal person.

Thx

Steph

Share this post


Link to post
Share on other sites

Which annoys me only because despite many researchers postulating that lack of Erythropoietin could be the fundamental problem behind many POTS patients it has never been tested and no studies are available on the topic or are even in progress.

No other medication seems to result in such a profound improvement in many long-term ill patients.

Share this post


Link to post
Share on other sites

I take Procrit, but at a very low dose - 10,000 units every 30 days. I can get the injection only if my hematocrit is below 13. I get the Procrit at the Oncologoy Department at Mayo Clinic Jacksonville where I am followed by a hemotologist. This doctor told me that they have virtually discontinued use of Procrit and Aranesp in cancer patients without metastatis. They are concerned about the risk of blood clots coupled with the risk of stimulating cell growth.

After having been told and having read the risks, I have decided to move ahead with these injections. The frequency and quantity of the injection is monthly, rather than weekly, and at a much lesser amount.

I think it is important for people taking Procrit to be followed by Oncology/Hematology to help avoid untoward events.

Lois

Share this post


Link to post
Share on other sites

Does anyone that takes erythropoietin get their insurance company to cover it? I discussed the possibility of starting the shots soon because we have tried every other option. My electrophysiologist has never used it for treating autonomic dysfunction and is going to call Dr. Grubb to discuss it more with him (I see Grubb as well) but he said the he doesn't think any insurance companies cover it for use of treating POTs only for treating enema and kidney issues. I know it is very expensive so before we even go further with it I needed to see if there is any chance of insurance covering it... and I am sure they will need diagnostic codes etc if I call them directly to try and find out. Also is the "average" treatment a weekly shot or monthly?

Share this post


Link to post
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.

Sign in to follow this  

×
×
  • Create New...