Your doctor doesn't sound like they are on top of things, hit and miss procrit shots might not help to much and weekly labs should be a must.
http://www.procrit.com/sites/default/files/pdf/ProcritBooklet.pdf
Thanks Can-Do, I'm gonna corner her on Tuesady, and get the facts. I only saw the nurse, last Tuesday. I'm trying to be organized, and I'm keeping a folder, with all my lab work, etc She had mentioned that my HGB was dropping gradually, but she made her conclusion by looking at my 2 week, 4wk, and 6 wk labs, only. Until then, I am taking it easy, because after getting dizzy, I have stumbled, etc. I have been avoiding driving on the freeway, for this reason, scary thought, to faint~
Thanks, Guy, but since it's not FDA approved for Hep C tx yet, I suppose I am gonna just wait until I see my Doc on Tuesday...I will write my questions down for her now, so I dont forget.
According to this link, Procrit dosage is to be kept to the minimum dosage~
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_anemia.pdf
I know of one guy, who has had the anemia while on treatment, and chose not to treat it with Procrit, he says he just 'toughed it out". Of course, he is single, and on Disabilty, where-as I am still having to work, to get the medical coverage, and also taking care of my 2 children, and my sick husband.
I am still looking for a response, on people who have had to use Procrit, and if there are any people who avoided having to use it on a weekly basis~
I think you need a new Dr doesn't make sense. Are you seeing a Hepa Dr?
My Doc order it once a week for four weeks and took labs once a week he had me stop at HBG 11. He also reduce Ribo. It took all four shotst o get to 11. The direction should be on the box. Whenever I am not sure about an order I call or e mail the doc.
I am still looking for a response, on people who have had to use Procrit, and if there are any people who avoided having to use it on a weekly basis~
---------------------------------------------------------------------------
There are many misnomers about the use of 'Hematopoietic growth factor"(Epo.Procrit) while doing HCV therapy. First it is "not " approved for use in HCV treatment ,however many doctors have been using it "off label"( approved for other conditions rather than the treatment in question).
There are many people that go through treatment entirely, with out it's use and some of these patients "do " have mild or moderate "hemolytic anemia"
For the most part in the majority of relatively healthy people having this type of drug induced temporary anemia is not dangerous .
This is why patients before embarking on HCV treatment should always undergo a physical examination with an EKG (heart function test) to ascertain if there is any underlying heart issues,as hemolytic anemia CAN adversely affect someone with these issues as well as underlying infections and /or cancers
Most other people ,HGB can go to quite low levels without there being any danger.
That being said low HGB. will almost always cause the usual symptoms ..shortness of breath ,dizziness,feeling faint ,fatigue and the heart to beat faster.
it is these symptoms that can cause 'quality of life "issues and anxiety to the person rather than it necessarily considered a dangerous problem ..so the doctor often dose reduces or prescribes Procrit.
Like any powerful drug good doctors will always weigh the benefit vs. the risk before prescribing.
Hope that helps...
Will
If I were you, I'd ask my doctor why she isn't ordering labs for you weekly.
My hepatologist had me doing weekly labs until I no longer needed rescue meds because my blood levels had stabilized,
Yes, that does help, Will, and explains alot. I am healthy, besides the Hep C (stage 2 fibrosis), and have only 19 and a half weeks to go, so my Doctor is taking all this in, when factoring what to do, I'm sure.
She's an Internal Medicine Physician, but yes, her specialty is Hep C. She is very good, but very busy, so she tends to focus on the very sick people first. I will make sure to make a list of questions for her, because I meant to ask her about weekly blood draws, and the Procrit, etc, but after the Nurse gave me the shot (which burned like heck) I started feeling a little woozy, and wanted to get home asap, as I was by myself, and driving. My fear was I would have an allergic reaction from it, but I feel fine, no added sx that I can tell, thankfully
Find a Hepa Dr who knows what they are doing!
Is it possible for you to take the shot at home?
This would probably be safer than driving afterwords.
( I'm impressed that you can drive, I had to stop 3 weeks into tx, due to mindfuzz)
Thanks, OH, I will have a list of questions for her, on next week. Last time I asked her, she said it was because my HGB had dropped very gradually, which she said was a much safer scenario, then a person who has a rapid drop. She is a great Doctor, but very busy. The only thing she ever told me was, "when yopur HGB drops below 10.0, we will start you on Procrit, and true to her word, when it went to 9.9, she started me on it. I dont feel tired enough to reduce my Riba, I just try to take it very easy.
My best-friend called, and invited us out to the Museum this week-end, and I had to explain to her, that going out to eat, would be an easier activity for my ; /
Bocep...I am really confused here! Who in the hell are you seeing in SF? I would reallly consider a second opinion and what does your best friend have anything to do with procrit?
Well, having gone UND at week 4, and now being at week 8 (and a hlf) with only 19 (hlf) weeks to go, I cant fathom changing Doctors, which would mean stopping treatment. I'm on Triple TX, and you cant stop a PI without developing a resistancy, plus I really love her, and the support group she runs, it's the light of my life!!
I actually had alot of trouble just finding one Doctor, to treat me. The Gastro Doctor that my PCP referred me to, only did Colonoscopies, etc. And My Primary Care Doctor never came up with any other referals. I had several friends who had been cured by this Doctor, and she has a good reputation in the field, etc.
I actually had alot of trouble just finding one Doctor, to treat me. The Gastro Doctor that my PCP referred me to, only did Colonoscopies, etc.
You need a Hepa Dr.I wish you the best
Oh, I just saw this question here~ I dont like to give out personal imfo on posts, like who my Doctor is, or even where I actually live. I use San Francisco, as the general area I'm from, but I dont reveal which town I'm actaully from, on a public website, and I'm sure many of us do that on here. I suppose I should just say "NorCal" or "Anywhere California", etc. Unfortunately, The Internet is a dangerous place.
Now, to answer the second part of your question, the reason I had mentioned my best-friend inviting me to a museum, was to illustrate that the anemia has me way too tired, to go to a Museum! The only thing I can manage to do, is work my job, in the morning (I'm an Attendant) and take care of my sick husband, and two sons.
I have a hard time walking very far, because the anemia causes breathlessness, but I can still go out for lunch, etc. Hopefully the Procrit will resolve this "quality of life" issue
Well, without revealing too much personal imfo I will say again, my Doctor specializes in treating Hepatitis C, and has a great reputation in the field : )
I feel good, and I'm UND, and that is all we can hope for~
Rules for Posting Questions in Forums and Public Areas
In Forums and Public Areas that are being moderated by healthcare professionals, answers will be posted in the forum and will appear indented beneath the original question, usually within 5 to 10 business days.
MedHelp Public Areas, which includes all areas of the MedHelp Site where users may post content, are for the exchange of information and support ONLY. In consideration of being allowed to use the Public Areas, you agree that the following actions shall constitute a material breach of these Terms and Conditions of Use:
Posting questions or comments by persons under 13 years of age without the consent of their parents.
Posting your full name(s), or any other confidential or personally identifiable information on the MedHelp International website. *
Posting names, e-mail addresses, telephone numbers or any other confidential or personally identifiable information of yourself or any person(s) or entities.
@jules2551: I would be violating Terms of Service, to tell you the name of my Doctor, and it is considered "fishing" for imformation, to ask someone "what Doctor are you seeing in S.F."~ I hope this explains things better, no disrespect intended
I can tell you how often my doctor tells me to take procrit but it is specifically geared to me. I also had to dose reduce the riba. The procrit seems to take a long time to help with me - 4 weeks before my hemoglobin rose into the 10s. My goal this treatment is to stay in the 10s. I have weekly CBCs. I have an rx for procrit every 5 days. Since my hgb has come into the 10s I have upped my riba to the original amount - 1200mg per day. I am going to continue taking the procrit every 5 days, but if my hgb gets into the 11s I will drop back to once a week. There is no way I will discontinue it until I am done with tx.
when my HGB hit 10.5 my NP put in the request for procrit but my ins co wouldn't approve it until it was under 10. i think that might be the same with all ins co's cuz that's what is on the procrit site. when i hit 10 i was on 1 shot per week (40k units). when my hgb hit around 8.5 i did another shot per week. when it hit 7.5 i did another shot. 3 a week was a problem cuz you aren't supposed to take interferon close to the procrit; i think 48 hours. i was on 3 shots per week for a couple of weeks then my HGB hit 7 and i got a call from the NP to go to the ER for a blood x-fusion. after 3 pints i felt great, up to 11.2. there are risks with procrit, namely heart attack and stroke. i had weekly CBC's too. they reduced my riba to 600 after the x-fusion and shortly after i was up to 800 where i remained for the last 2 months. i also did 1 shot of procrit a week and my hgb stayed around 8.5, which i was ok with....anemia is a major reason for stopping treatment. i just met with my hep doc this week and he really cautioned me relative to anemia when i start trip tx in a few months. in my case, cuz all this has to do with JUST me cuz we are all different, i think the procrit just kept me somewhat stable; it didn't increase my hgb. we're all different.
funny story; when i was dropped off at the entrance to the ER it took me longer to walk in to the desk than it took for the person who took me to park and find the er. i laughed about that one ... good luck with the anemia.
I am in week 21 of triple with Vic. Started Procrit 3 weeks ago since my hgb dropped to 8.6. I get labs every week. After 3 weeks on the procrit I am a steady 10.6 taking 40000 units weekly. I also reduced my ribs from 1200 to 1000 with the goal getting back to 1200. There is a big difference in the fatigue factor between 8.6 and 10.6. The bummer is my insurance makes me pay 10% of the cost which is about $300 month. Well worth it though as I can now work 5 days a week. 7 weeks to go and then I am back in the world of the living.
Advocate1955