Aa
LENGTH OF TREATMENT
Hi everyone. I just came back from the doctor in Chicago on Friday and after 7 injections my bloodwork came back undetected less than 5. My viral load was 1.5 million when I started. I was excited then the doctor said I had to be undetected for 15 months straight? I thought everyone only had to be on the treatment for 48 months not 72 months? My genotype is 1a which I know is the hardest to treat but I thought the treatment was still 48 months. My hemoglobin was 9 and she said I was anemic and my white blood count is at 1.8 low. I told her I was tired all the time and my legs were sore and felt like rubber and some days I could not hardly walk. She said drink more gatorade and when I felt like I could not get up in the morning she would give me a shot of procrit. Why cant she give me the shot now?Do ihave to wait because my hemoglobin is not low enough yet? Does this doctor know what she is talking about??? I am a mail carrier and some days I can barely make it threw the day in this heat we had. I feel like crying all the time. I come home from work and go straight to bed for at least a 2 hour nap and then I am back in bed at 8:00 pm. I feel so bad for my family that I am so tired all the time. Is there any vitamins I can take?? Thank you for all your responses and help. I appreciate it so much.
Gawd yes, it just blows the mind to think of what our buddy must be going through. I sometimes wonder what medical school does to compassion and common sense.
Still waking up with headache, not severe, but not entirely pleasant either. And yesterday I felt as if I had just taken a shot--running slightly warm, achey, fluish, out of it. Interesting... I just hope the brain fog clears sooner than later. There is a serious mountain of unfinished work on my desk which I absolutely could not tackle while under the influence. Yes, reentering life is going to be a challenge in itself.
Thanks for the info abut testing. Makes good sense to run a PCR a month later. Perhaps I'll hold off until then, too. I did request a 3-month test, and after a brief (and contentious) discussion, it was granted. I feel that there's little point in doing a PCR right now as I know I'm clear. (Newbies: It's the next few weeks that are critical.) Just curious--did your medical staff send you off with any advice at all? Mine certainly didn't. Terrible practice of medicine, I say.
You going to start hanging out in the Russian baths in the East Village to sweat all those toxins away?
Still waking up with headache, not severe, but not entirely pleasant either. And yesterday I felt as if I had just taken a shot--running slightly warm, achey, fluish, out of it. Interesting... I just hope the brain fog clears sooner than later. There is a serious mountain of unfinished work on my desk which I absolutely could not tackle while under the influence. Yes, reentering life is going to be a challenge in itself.
Thanks for the info abut testing. Makes good sense to run a PCR a month later. Perhaps I'll hold off until then, too. I did request a 3-month test, and after a brief (and contentious) discussion, it was granted. I feel that there's little point in doing a PCR right now as I know I'm clear. (Newbies: It's the next few weeks that are critical.) Just curious--did your medical staff send you off with any advice at all? Mine certainly didn't. Terrible practice of medicine, I say.
You going to start hanging out in the Russian baths in the East Village to sweat all those toxins away?
I just called and left the doctor a message and told her I wanted Procrit now because I can't hardly move today. She said that women have menstral periods and they are anemic anyways so being hemoglobin 9 did not consern her and as far as the white blood cells she also said that she would rather see me have 1 thousand 8 hundred good blood cells than infected ones and that I would be fine with that many. I am worried about me carrying mail this winter and getting sick and not being able to fight off the infection. I freeze with the airconditioner on. I have to wear a jacket in the house cuz I am so cold. I am dreading winter. Thanks for all the responses.
Rule of thumb for genotype 1's is to treat 36-weeks after you clear. In your case that would be 43 weeks of tx. And that's if you have little or no liver damage. Many doctors treat stage 3's and 4's for as long as 72 weeks. A few even two years.
Have no idea where you doc came up with the 15-week thing. You might ask her for a study report to back this up, but I don't think she'll come up with one.
Recently, there was a European study that suggested *selected* geno 1's could treat for only 24 weeks. But the catch was they had to have a low (<600,000) pre-x viral load and non-detectable at week #4. You don't fall into either of those selected categories. So it would be risky IMO to treat for less than 43 weeks assuming little liver damage, and you should consider even longer if you are stage 3 or 4.
As far as the Procrit is concerned, you're going to need more than one shot. Usual protocol is to start with 40,000 units/wk. I've been on that regimen for the last twenty weeks. Procrit takes 2-4 weeks to kick in so you don't want to wait any longer. I would call your doctor and insist on a rx for Procrit right away. If she won't give it to you I'd try and get it from my regular doctor and start looking for a new liver specialist.
Anyway...good news is you're non-detectible at week 7. Now, you just have to make sure your treatement goes responsibly.
-- Jim
Have no idea where you doc came up with the 15-week thing. You might ask her for a study report to back this up, but I don't think she'll come up with one.
Recently, there was a European study that suggested *selected* geno 1's could treat for only 24 weeks. But the catch was they had to have a low (<600,000) pre-x viral load and non-detectable at week #4. You don't fall into either of those selected categories. So it would be risky IMO to treat for less than 43 weeks assuming little liver damage, and you should consider even longer if you are stage 3 or 4.
As far as the Procrit is concerned, you're going to need more than one shot. Usual protocol is to start with 40,000 units/wk. I've been on that regimen for the last twenty weeks. Procrit takes 2-4 weeks to kick in so you don't want to wait any longer. I would call your doctor and insist on a rx for Procrit right away. If she won't give it to you I'd try and get it from my regular doctor and start looking for a new liver specialist.
Anyway...good news is you're non-detectible at week 7. Now, you just have to make sure your treatement goes responsibly.
-- Jim
Now I'm really getting my dander up! Another important consideration is where your baseline Hgb was. Not all bodies are created equal, and some people present with severe anemia symptoms at Hgb levels that other people can tolerate. Let's say you had a 3-point drop from where you were before starting tx, like I did. On paper I didn't look so bad, but I could barely walk a block without gasping like a fish and I'm pretty physically active, usually. So what if you're not on the "right" low place on the scale? This is rigid, mechanistic thinking on your doctor's part. And frankly, that remark about menstruating women sounds passive aggressive.
If I were in your shoes, I would bug her again and perhaps start looking for someone else to oversee treatment. I'm so sorry you're going through this. Definitely the last thing you need.
If I were in your shoes, I would bug her again and perhaps start looking for someone else to oversee treatment. I'm so sorry you're going through this. Definitely the last thing you need.
Here's some bedtime reading to expand on the necessity of Procrit intervention. Scroll down to "hemotologic side effects."
Link: http://tinyurl.com/dnmrt
Procrit is indicated when hemoglobin falls below 10, or as Califia said, when there's a rapid decline in hemoglobin.
In men, especially if you're over 50, a rapid decline can be as little as two points from pre-treatment hemoglobin in a few weeks period time.
My pre-tx hemoglobin was 14.9 and I ended up in the ER when it dropped to 12.2 in less than 3 weeks. You don't want this to happen.
Unfortunatly, your doctors attitude is all too common and the results aren't pretty. Either you "tough" through things and have a miserable quality of life, or you fall apart like I did and end up either having to reduce medications, or temporarily stop treatment. In both those cases you will reduce your chances for eventually clearing the virus.
Might be time to shop for a new doc, but until you find a better one, try and wrangle some Procrit from the one you have.
-- Jim
Link: http://tinyurl.com/dnmrt
Procrit is indicated when hemoglobin falls below 10, or as Califia said, when there's a rapid decline in hemoglobin.
In men, especially if you're over 50, a rapid decline can be as little as two points from pre-treatment hemoglobin in a few weeks period time.
My pre-tx hemoglobin was 14.9 and I ended up in the ER when it dropped to 12.2 in less than 3 weeks. You don't want this to happen.
Unfortunatly, your doctors attitude is all too common and the results aren't pretty. Either you "tough" through things and have a miserable quality of life, or you fall apart like I did and end up either having to reduce medications, or temporarily stop treatment. In both those cases you will reduce your chances for eventually clearing the virus.
Might be time to shop for a new doc, but until you find a better one, try and wrangle some Procrit from the one you have.
-- Jim
Just re-read the thread. Did your doctor say she wanted to treat 15 weeks or 15 MONTHS after you clear?
15 months sounds more plausible plan, although if you're a stage 0 or 1, you could probably get away with 42 weeks. But if she said 15 weeks, then I'm unaware of any studies to back her up.
-- Jim
15 months sounds more plausible plan, although if you're a stage 0 or 1, you could probably get away with 42 weeks. But if she said 15 weeks, then I'm unaware of any studies to back her up.
-- Jim
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