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Avatar universal

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.
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Avatar universal
It seems like the length of treatment is not the most important issue for you right now.  More important would be to get your anemia taken care of.  I'll bet you have excellent insurance with the post office.  I suggest you bypass the hep doctor and make an appointment with a hemotologist. Get copies of all your lab work if you don't have it already.  If you need a reference for the hemotologist, ask your hep dr for it. If he won't give you one, ask your primary care doc. My hep doc does not treat for the blood problems and refers to a hemotologist right up front (I am on #5).  He says it is too hard to get an appointment when you need it, so he prefers that you get in before you need it and let the hemo doc monitor the blood. I thought that was crazy when he said it (just one more doc to pay) but now I think it is wise.  My appointment with the hemotologist is tomorrow.  My hgb started at 14.6, went to 12.4 at 2 weeks and 12.9 at 3 weeks.  I will get it tested again Friday.  I can feel the difference at 12.+ and I cannot imagine your continuing to do your route at 9.  Please be assertive here.
Kathy
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Avatar universal
"So, I ask you what is the better trade off: 12 more weeks now, or 72 more weeks later????? "
That is exactly how I felt with my tx, I rather do the extra time than start over with more time added. It is so logical I don't know why more don't do it! Regardless of whether you have mild or severe damage, you want this bug gone with ONE try. So giving it the best shot the first time is the most sensible approach if you are tolerating the tx.
So many with 48 wks, EVR, 100% compliance and relapsing should be motivation enough. Of course some with that much time and suboptimal doses make it to SVR, but do I want to take the chance?
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Avatar universal

After working with doctors for almost 20 years we have to remember they are like everyone else, some are good at their job, some not so good...just because they managed to pass medical school doesn't mean they got good grades. Plus they probably don't have time to keep up on every thing like they should. They have HUGE egos and some think they are God...one ER doc I know bragged about how he 'brought a woman back from the dead' but the poor thing needed a walker, dragged her one leg, couldn't speak...etc etc...
Cin
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Avatar universal
Yes I had a liver biopsy and the doctor punctured a hole in my galbladder and let me lay in the hospital for a week and said nothing was wrong with me.  I called a new doctor in and he did emergency surgery and my galbladder was gangreen and I had peritnits infection and almost died.  My biopsy was scarring a 1-2 and my inflammation was 3-4.  I am a 41 year old female
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Avatar universal
So funny, your post wasn't there when I first started to write mine, we must have been typing at the same time.  And with equal indignation!

You asked about my test schedule, don't know if you saw my response, as the threads get old so fast.  Next PCR on September 21.  You?

How are you doing?  My headaches continue to come and go, but in general I think I am starting to feel better, maybe a little more clarity of thought.? Nah!  You are right about thinking too much.  I'm trying to relax and enjoy life, though I know I have serious decisions ahead regarding work etc.  

Feel good.

dA
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Avatar universal
HCA
Procrit is not like aspirin-taking one shot when symptoms are bad will not help.
Procrit needs to be taken consistently,and preferably introduced before hg drops to <10.
The rate at which hg drops after the commencement of treatment is the best indicator,particularly the first three weeks.
Your virological resonse so far is very encouraging.
Demand a course of Procrit now!
If you don't you will end up reducing Ribavirin dosage,which we don't want to do.
Helpful - 0
Avatar universal
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?
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Avatar universal
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.
Helpful - 0
Avatar universal
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
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Avatar universal
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.
Helpful - 0
Avatar universal
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
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Avatar universal
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
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Avatar universal
I started treatment on June 17th and had hemoglobin at 14.7 then on July 3rd ended up in the ER because I could not breath and my Hepat Doc said that it was because I quit smoking prior to treatment.  My hemoglobin in ER was 11.7.  That was 2 weeks after treatment.  Went back for bloodwork on August 1st one month later and now my hemoglobin is at a 9 and she says that is no concern of hers.  I still have a hard time breathing.
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Avatar universal
She wants to treat me 15 more months so I would be treating til next October.  She says you have to treat 15 months longer from the month you became undetected.
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Avatar universal
Based on what you just wrote you need a new doctor, assuming your insurance allows. If you tell us what area you live in, maybe someone can make a suggestion. But in the meanwhile -- or if you're stuck with her for insurance reasons -- somehow you've got to demand the Procrit. You know her better than we do, but often if a doctor is challenged, they will relent.

-- Jim
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Avatar universal
We just had a crossed post. My suggestion to change doctors was not to treatment length but to the Procrit situation. 15 months post clearing is a legitimate tx strategy for geno 1's. Especially if you're a stage 3 or 4. Have you had a biopsy and do you know what stage you are?
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Avatar universal
I have great insurance.  I work at the Post office and have blue cross and blue shield.  I live in Indiana and this doctor is in Northwestern hospital in Chicago.
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Avatar universal
The price on my SAM-e (30ct. box of 400 mg. caplets) is $19.99 at vitacost.com

Susan
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Avatar universal
You are seriously anemic and should be on Procrit now!  I can't believe you are delivering mail in your condition.  You might consider a different doctor, since this one seems to be ignoring convention (HGB<10 = Procrit) and endangering not only your ability to continue tx, but possibly your life.  Procrit is very expensive, and some docs act as if they are paying for it, no doubt at the urging of insurance companies.  Is your doc a hepatologist or gastroenterologist with experience treating hep C?  It often makes a difference.  Oh, and my doc says Neupogen is needed when WBCs go under 2000.

Congrats on your undetectable status.  For geno 1's, longer tx is proving to be better.  Also higher doses of Ribavirin seem to increase odds of SVR.  Educate your doctor, insist on a higher standard of care, and stay focused on the goal, SVR.  My best to you.

dA
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Avatar universal
Based on your genotype, biopsy, EVR at week 7, age, etc., standard tx is 36 weeks after you clear the virus. So in your case that would be 42 weeks. 15 months plus 7 weeks sems a little on the agressive side, but hopefully it will increase your chances of SVR.
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86075 tn?1238115091
Hi Veggie, noticed you asked about sam-e, something I know a little something about. Personally, I go to this site called Vitamin Shoppe, when I'm lazy, because I live 4 miles from a store. There are a few generalized vitamin stores around, and I've sampled a few, because these places usually buy other leading vitamin companies overages and it's a good way to buy economical vitamins and herbs. I personally think Vitamin Shoppe is the best of the lot. I save a lot of money buying their particular brand on most things. For example, I love aloe vera juice, one of the best things I take, I think, and their brand is soooo cheap! Aloe vera isn't usually cheap. They have good whey protein powders too. I just looked on their site and their sam-e is actually a bit more expensive then some of the others they carry though, in that case. But that's another good thing, they carry many other brand names and you can price compare and also read a lot on all the types of things they carry. They are pretty thorough. And they carry many types of vitamins and herbs, much more than most places. I do take sam-e but not all the time, my instinct tells me that I build up on it, because it'll work for me for a time and then it makes me kind of edgy, so I lay off for awhile. I know many people that benefit from it, of course, that caveat about asking your doc applies to it. I only take 200mg a day, which is low, and I know people who take more than that.  Hope this helps.
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Avatar universal
Thanks for info, it's much appreciated....I found a site online that has a special buy one get two free

PURITAN'S PRIDE SAM-e 400 mg. Tablets (30  Tablets)
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Avatar universal
Hemoglobin at 9.0 or below is very debilitating.  Granted, you may not be quite in the 'life threatening' range yet (under 8.0 is really dangerous) , but you are getting very close.  I had a difficult time functioning at all when I got into the 9.0 to 8.5 area.  If you have to perform physical work, you are probably increasing your risk of complications, and putting yourself through needless torture.  I did Procrit for the last 15 MONTHS of my therapy, two times per week, and I was able to stay near 10.0 Hemoglobin, (which is still not great!).  

Seek a second expert medical opinion, OR, really push your doctor to get you on Procrit immediately.  You do not need to endure this symptom, nor to endanger your health.  The effect of Procrit makes all the difference in the world!
By the way, it allowed me to achieve my SVR, after 18 months of total tx (Type 1-B, 1.2 million viral load at start of tx, and negative (undetected) on tx after 19 weeks of high dose Peg-Intron/Ribavirin therapy.   Best of Luck!  Wake your doctor up to your difficult anemic situation.  This is beyond standard protocal for Procrit intervention.

DoubleDose
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Avatar universal
I was a 1A and tx for 48 wks.  SVR at 6-mo post; coming up on 1 year next month.  As to your Hgb, mine dropped to 9.1 once and my dr wanted me to reduce meds immediately.  I refused and got more bloodwork done that day and it was back to 10.2.  I never used the Procrit but it sounds like you need it.  Too low a Hgb can cause some heart problems.  Did you keep a copy of your labwork?

Please read up and get very informed so when you talk to your dr you will have all the ammunition you need to make sure you get the care you deserve.  

Good luck to you.  And CONGRATULATIONS on being Undetectable so early in the game.
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