LENGTH OF TREATMENT

[dodger1]

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.

[v eggie dip]

dodger sorry to jump in on your thread but you asked if anyone knew of vitamins you can take and it reminded me to ask about Sam-E...Can someone tell me where I can buy Sam-E online and what is the best to take and how much to ake?  Thanks Beth

[jaroman]

I am sorry you are feeling so bad.  Your vl results are great though!  It seems to be working.
The standard treatment is 48 WEEKS, not months.  I think your docs idea of 15 months(60 weeks) is great for geno1.  Wish mine was thinking that.
I believe you should have Procrit at 10gm Hgb.  Demand it now.
Hang in there.

[Califia]

Re the procrit:   you're right, your doctor is being inflexible and probably also cruel.  Have you made it clear that  your livelihood depends on your being able to walk long distances?   With obvious symptoms like that, she should have you on Procrit right now.  There is no reason why you should be suffering to this extent.   As for treatment length, you're right again.   72-week treatment is still reserved for those who responded much later than you did.  You're right on schedule and it is strange that she would be talking about  extension.   Might be worth investing in a second opinion so you have some medical backup.   The last thing you feel like doing right now is playing advocate for yourself, but it looks like you're going to have to get (politely) aggressive about the Procrit.   Very best of luck to you.

Veggie:  Many good sources for SAM-e around.  You don't need to pay anymore than $28 per 30-count box of 400 mg.  I like SmartBomb's prices, and many people here have recommended Puritan's Pride and Vitacost.   If there are depression issues, take anywhere from 1200-1600 mg daily.  For liver support before, during and after tx , 600-800 mg.   Nature's Made brand has tested out consistently pure, as has Jarrow.

[donAlfonso]

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

[donAlfonso]

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

[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.

[Califia]

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 (achy), 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?

[dodger1]

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.

[jmjm530]

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

[Califia]

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.

[jmjm530]

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

[jmjm530]

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

[dodger1]

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.

[dodger1]

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.

[jmjm530]

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

[jmjm530]

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?

[dodger1]

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.

[Tallblonde]

The price on my SAM-e (30ct. box of 400 mg. caplets) is $19.99 at vitacost.com

Susan

[dodger1]

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

[jmjm530]

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.

[Forseegood]

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.

[v eggie dip]

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)

[DoubleDose]

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

[Lynne5477]

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.

[1fairygirl]

Dodger,
Whatever you decide to do about your hep doctor, could you, in the man time, get you gp to prescribe Procrit?  That would get you feeling better and give you some time if you decide to find a different doctor.  Good luck and health whatever you decide.
Smiles, Sue

[cquest]

I had to have a blood transfusion when my blood count went down to 8....2 pints...something to think about.
Cin

[iceboy]

Hi Guys

can I jump in with a question of mine. If I would start treatment with hgb below normal should I ask for starting on procrit before treatment. I have been low (11.9)on hgb, and actually low on all blood count as long as I know. It´s a possibility that I have this mediterranian syndrom (syndrome). I have not been tested for it, but it´s very likly, and therefore my doc was not concerned about it. I have never suffered from it, appart from very few times (dizzyness). Thanks. (I just have to keep on educating my self, and dear to ask more questions) By the way, those who dont know me yet, Im 1b newbie.

[jmjm530]

Sure. If your doc will allow. And take your first shot two-weeks before tx.

If you doc doesn't allow, insist on weekly monitoring of hemoglobin levels with a promise to intervene with Procrit should your hemo drop more than two points in any three-week period.

-- Jim

[iceboy]

Thanks Jmjm. Tell me, why does it seem to be such a hassle to get the prescription for procrit. Are there any side effects or does it have straining effect on the liver or other organs. I did go onto the url you suggested for procrit, but I havn´t read it yet. (lazy) ta..

[jmjm530]

There is no good reason. And I'm sure if the docs were being treated themselves the oragne Procrit top would be popped sooner than you could say A N E M I A.

I think it's simply that most docs are either: (1) By the book old school; (2)grossly uninformed; (3) or just simply too slow on the trigger. Another reason is that many of the early trials didn't use Procrit because it might screw up their data and therefore a lot of the tx info on Procrit was slow in coming.

Someone on this board (or another) posted that her doc said, "You'll feel better in a day or two" after prescribing Procrit. Well, it doesn't work that way. It usually takes 2-4 weeks to kick in. And some of these guys go to med school and then get paid to dole out this advice. I don't get it.

Like it or not, when it comes to tx we're often on our own. What's that old song about "the best consumer is an educated consumer". And the other..."buyer beware". Well, we're the ones buying the tx and we had better be educated, beware and a whole lot of other stuff.

-- Jim

[Is_This_Real?]

Guys...

I understand that the standard treatment is less than what dodger was told and what his doctor prescribes.  BUT, I would by all means listen to him and do what he says if at all possible.

Jim says that common protocal is to treat for 36 weeks after clearance.  I remember reading many studies like that, but the ones I read said that if you treat 40 weeks post clearance then you should have a 90% chance of SVR.  

THAT IS NOT GOOD ENOUGH!!!

Of course all depends upon how well you are tolerating the treatment, but if you can stand it, treat for as long as you can!

I started with a viral load of 7.5 million.  I tested at 40 at week 4.  I was undetectable (less than 10)at week 8.  I was negative by qualitative test by week 12, week 24, and week 48.  I treated for the full 48 weeks and never missed a dose or never was late or never took less than a full dose of either the Pegasys or the Cophegas.

So, if I was negative at week 8, and treated for a full 48 weeks, then I treated for a full 40 weeks post clearance.  But, I had relapsed by 1 month post treatment.

So, don't listen to the "standard" and don't read the statistics and the percentages.  Listen to your doctor.

If your doctor wants you to go for 60 weeks, just think:   The standard and the minimum for a genotype 1 is 48 weeks, so your doctor is only asking you to do 12 additional weeks.  IF you don't and should you relapse, the only choice you have is to try again for a full 72 weeks.

So, I ask you what is the better trade off:  12 more weeks now, or 72 more weeks later?????  IF I had of had the choice, I would have easily chosen the 12!

[iceboy]

thanks for this jm. Well my bloodwork always comes back as being anemic, event though I dont feel it, so I guess I need to dig into this. Just found a good site with dictionary and short discription, pics and all on medlineplus site. I really want to trust my doctor, but like you say, it looks like we have to be our advocates and monitor everything and dig into it. Im reading all my blood test from 13 years ago when I was in really bad shape. it was thought to be allergy, but it´s pretty obvious it was c causing the problem.

One thing, my doc wants to vacinate for A and B now. any opinion? And what measurment do you use over there for AFP. found one test from back then saying 159. In my new found dictionary they state the test in micrograms?

[jmjm530]

IsThisReal said previously: "Jim says that common protocal is to treat for 36 weeks after clearance."
______________________

I know you didn't do it intentionally, but you're quoting me out of context. I also said elsewhere in this thread that while 67 months tx for a geno 1 with minimal liver damage is agressive, hopefully it will increase Dodger's chance for SVR. I also mentioned that stage 3's and 4's are often treated for 72 weeks and sometimes even for two years.

I'm a firm believer in doing your homework, finding your options, and then making the tx decision that is right for you. That doesn't mean blindly following "common protocol" nor does it mean blindly following what your doctor says.

In many cases there is no right or wrong, simply different conclusions based on the same data but with a different perspective. That's why some very good doctors come to different conclusions looking at the same studies.

Dodger has been presented with a number of options and hopefully will make the right choice based on her perspective. And that's really the only one that matters.

Sorry for the speech but I just got jacked up by a slice of blue berry pie and now must go and down a bottle of Gaviscon. :)

-- Jim

[jmjm530]

The hemoglobin/anemia theme comes up so often in a negative way in these discussions groups that it's not hard to conclude that many docs are not doing their job.

As far as being vacinated for hep a and b before tx, I believe that is pretty standard protocol over here. I've read it, and heard it from two sets of tx doctors.

Without going into details, I ended up not vaccinating because I had what might have been a bad reaction to a hep B vaccine three years ago, and therefore didn't want to chance a second vaccination when I starting tx four months ago.

-- Jim

[cquest]

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

[cuteus]

"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?

[friole]

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