I've just quite honestly never heard of this before (except first shot training of course). Considering I tried not do the Epo on the same night as the IFN it would have meant going there three times a week! I couldn't have handled that!!!!!!!!! And all those copays!!!!!!!!!!!!!
nygirl has a point. I know some people have had to take neupogen at the doctor's but this is the first I've heard of procrit at the doctors.
I wonder how common this is ?
I really dont understand why you go to the office for any shots, that is highly irregular. If you have to start on Procrit twice a week, as I did, that would be a major pain. And if you were taking it at home like the rest of us did, you could leave it out and let warm up and that would take some of the sting out of it.
Thank you Dee. My level dropped from 9.9 at 6 weeks, to 9.4 at 8 weeks, so I just had my second (weekly) procrit shot (at my 9 week appt) The Doctor says it takes at least 10 days to help, and since I hae only been on it for 8 days, I really cant be going up and down those stairs, to empty the garbage, and do our families laundry....wish I could make my husband understand this, I am usually a super-active person...thanks for the support~
I asked my Doctor about this, if I should be taking th Procrit on the same day as the Interferon, and she told me it was not a problem. I couldn't find any reserch Studies on this subject, do you happen to know of any, Uncle, or is it just your Doctors decision?
Thank you for your response, Frijole, and I just wanted to say: I love yr nick-name. It does seem like there is a great variance, in each of our particular body chemistry's, and how we react to these meds- no exact Science here!
Hi, not sure if my experience will help or not. I started out with HGB at 14.8 before Incivek Peg Riba, I quickly dropped to 9.9 asked about Procrit and was told I was stable then each week it dropped until stopping at 9.7.
At week 19 it finally started to go back up. I was never offered rescue drugs despite the fact that I had been told I would be given them if needed.
As you said, I was tired, breathless, could not balance myself and when I called the doctor they told me to lay down. I am surprised you can do anything. Hope your levels start to come up soon
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.
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 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.
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@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
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~
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
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
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.
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?
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 ; /
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)
Find a Hepa Dr who knows what they are doing!
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
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.
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,
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~
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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
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.
Advocate1955