QUESTION ABOUT COPEGUS

[dodger1]

My doctor yesterday reduced my copegus from 800mg a day to 600mg a day because I broke out with a itchy rash on my face and arms and legs. Plus my hemoglobin  was at a 9 on August 1st and my next blood work appointment is September 1st so I am sure it is lower than a 9. I will be getting my procrit tomorrow from Fed Ex.  My question is will my treatment be jeopordized by reducing meds.  I was undetected at 7 weeks. Type 1a. Thank you so much  Sheila

[BostonGirl]

Well, I had spells of neuropathy & several neurological sx, prior to tx. I also bad flare ups with my cryo. My personal opinion is that the that interferon has stirred up some things. My doctor will not admit that the drugs are causing all these sx, but my nurse ( my angel ) says it is more than likely tx related. We are believing for the best; that things will eventually clear up as time goes by. ( it's only been 4 weeks post tx )

Good luck with your next PCR Viral load. I hope & pray that you become undetected. I also hope that you will continue tx past 48 weeks. My original plan was to do 18 months.

I think you would add 36 weeks to your treatment, from the time you get to zero. ( at least that is what these so called experts told me ) LOL! What do they know anyway? I am finding much more knowledge and information coming from BB's than the average Gastro. I had to go through 3-4 to find the Hepatologist I have now.

My current Hepatologist is good & I do like her. She actually listens to me. She will even admire the fact that I might know something about Hep C ( maybe something I've recently read about ) that she doesn't know. No ego there.

Well, again, best wishes & keep us all posted. We love to see that word UNDETECTED!!!

((((( Sue )))))

[hiya24]

It is weird that your neuropathy is worse now. Does your doc think it is related to tx? My doc indicated that most sides go away after tx is stopped but I have read a couple other accounts on this site of problems getting worse.  Good luck at the docs.

I too was still detectable at 25 weeks ( titer down to 2 IU/ml but still there). I am tolerating the sides pretty well and am going to continue for a few more months at least to see if I become undetectible. Titering again on Monday(at week 33 now)....fingers crossed!

[BostonGirl]

hiya;
     I am a 1A and had a Huge vl at the start ( 55,967,000 ) I did get close to zero by week 24 ( I was 129 or 149 can't remember )

Anyway, orginally we had planned on going 18 months because of the high vl > but I developed MS-like sx 4-5 months into the tx and they continually got worse. I was taken off tx right at 24 weeks. Should have done 18 months.

It's been one month this Sunday that I've been off tx. Now I have more neuropathy & much more pain than when I was on tx. Weird? I see the neurologist for a workup on the 8th.

((((( Sue ))))))

[cuteus]

very stimulating discussion.
I started at 135-140lbs and was put on 1000mg. The wt dose would have been 845 or so, but they go for the higher dose, not the lowest. at around month 2 or 3 I was reduced to 800 due to low hgb and given Procrit, back in sept'03. The med worked but the doc/PA forgot to increase riba until I asked in January'04, all those months I was at 800! I still cleared the virus at wk 24, but since I was detectable at wk 12, and was riba reduced, I fought for extension to 72wks. I was a 1A, and hopefully the 9 mo post tx pcr will re confirm that.
The Procrit was started at 10.2 mark because I complained of weird chest pains that they wanted to attribute to GERD. Afterwards, during the echo stress test, I felt the same discomfort when they were doing the MRI after the radioisotope. They "stimulate" the heart with low levels of electric signals and one of them gave me that discomfort. Everything came out normal, though. I am so glad I insisted on intervention when I did. But you got to stay on top of these drs! This board helped me see that.

[susan400]

I was really fortunately in that my doctor started me out with Procrit.  He had me take it for 2 weeks before I started this treatment as a preventative.  This is because on my last 5+ courses of treating, I always went anemic.  So, this time he decided to do a pre-emptive strike, to keep that from happening. Since I'm probably going to be started Neupogen next month, I'm wondering if any of you know how long it takes for it to kick in?

Susan

[jmjm530]

Sheila,

I probably wasn't that clear. I'm not suggesting you go to the ER for your CBC bloodwork. Your doctor should order that test like tomorrow since your last one was three weeks ago. If your treatment doctor won't, maybe your GP. It's a real simple test.

In any event, if you have your CBC tomorrow, you should have the results by Monday. Maybe you can negotiate with your tx doctor to wait until then before reducing the dose.

It's a hard call because I went through the same thing and did go off riba completely for several days before I started Procrit. The way I was feeling it was probably the lesser of two evils.

Looking back, it's obvious your doctor waited too long and this is unfortunatly all too common. Hopefully, with your EVR at week 4, things will be fine. Right now you've got a balancing act between holding a riba dose and your overall health. Frankly, I'd take a week off from work and hang out on the couch until my hemoglobin recovers. The less energy you put out, the easier you can handle lower hemoglobin levels.  

My comment on the ER was just a contingency plan if you had serious problems over the weekend like difficulty breathing, etc. Don't be afraid to go as a last resort. The first thing they do is give you IV fluids which helps a lot. So does not moving. :)

-- Jim

[hiya24]

Hi boston girl. Just wondering if you are type 1 and stopped tx at 24 weeks because you didn't clear or if you are type 2 and were only supposed to go 24 weeks?  Thanks.

[dodger1]

When I say I feel like **** it means I have a hard time breathing when I walk from place to place.  I feel like my legs are going to give out on me.  Severly fatiqued.  I asked my boss to cut off my walking part of my mail route because I cant do it anymore.  I cant breath when I get back to my mail truck.  My white blood cells were at a 1.8 August 1st also. What do I tell them at ER when I go in tomorrow or Saturday so I can get some blood work that I am on that medicine and I cant breath.  Will they give it to me with out my doctor calling?    By the way,  when I first started my viral load was at 1.5 million.  My first shot was June 17th and on July 1st just 2 shots of treatment my viral load was at 231.  So I was probably undetected at 4 weeks for sure.  I did not get a blood test again until my 7th shot and was undectected.  My doctor said I was a great responder.  I just hope her reducing my meds dont ruin what I have accomplished. Thanks Jim you have been a great help.  Sheila

[jmjm530]

If you want to wade through the package insert, the dosage instructions are either 1000mg/day or 1200 mg/day of riba based on patients weight with cut off point around 165 pounds for geno 1's and 4's.
http://www.rocheusa.com/products/copegus/pi.pdf

I believe the European guidelines are a little different with three  cut off points, one of which is 800 mg/day.

But as Susan suggests, doctors are erring on the high side of these guidelines more and more to obtain a better SVR. Of course, the big risk here is compliance and drop out's due to sides, so you really need a doctor  who will work with you, administer Procrit timely, and monitor your blood weekly at least until your hemoglobin stabalizes.

I'm on 1200 mg/day of riba and currently weigh 154lbs from a pre-tx weight of 176. My NP said I could reduce to 1000 mg/day but I won't have any part of it.

-- Jim

[jmjm530]

Meant to say "1000 mg/day" in first sentence of last post.

[rearfang]

I take only 800 mg per day as well (I weigh less than 110). For small people, 800 is the norm.
Lauren

[BostonGirl]

Hi Lauren;
         I was on 1000 mg. per day, never reduced my dose, even though my hemo took huge dose dive right from the start of tx ( I got procrit at 3 weeks ) I weighed in at around 120 lbs. the day I did my first shot. ( I am 5'5" so on the small side too )

I was told 1000 mg. was standard dosage for my weight & size. I don't know about taking 800 mg and being a 1b? My nurse said, if I were to weigh 10-15 lbs. less, then the 800 mg. would work.

At any rate, I did the 24 weeks of tx at full doses and never cleared. I probaably needed more peg & or more riba to clear.

We are all different and I think that the dosages should be based on how we respond to the tx ( very early into tx ) 4 and 8 weeks into tx. Not on how much we weigh ( just my opinion )


(((( Sue )))))

[jmjm530]

Sheila,

I can't responsibly advise you. I'm still not sure why you're only on 800 mg/day of riba when you should be on 1100 mg/day as a genotype 1a.

Also, you say you feel like "****" but as you know there are different levels of **** and I'd be remise to advise going against your doctor if you're in really bad shape -- especially considering a hemoglobin of 9, three weeks ago.

What I do advise is what I previously said. Ask your doctor why you're on a lower than standard ribavirin dose. Also, you should request a CBC right away. Can't make intelligent decisions on a hemoglobin level 3 weeks old. Maybe your doctor will hold off on dose reduction pending the new hemoglobin result. If you get your blood drawn tomorrow, he should have results by Monday.

If things get totally out of control over the weekend, you can always check into the ER. That's why I did at week 3.

Good luck and let us know how it turns out. The good news is that you've been clear since week 7, and you're almost at week 12, where dose reductions -- while important -- are a little less important.

Don't know the cost of Neupogen but I'm sure it ain't cheap either. You don't really need it until your ANC (neutrophils absolute) drop below 500. Procrit is what you need now.

BTW Procrit can take 2-4 weeks to kick in so don't expect a miracle right away. But once you do start Procrit, weekly CBC's are a good idea to monitor your progress. Make a diary and try and correlate how you're feeling (1-10) with your hemoglobin level. It will come in helpful later on when you try and manage your Procrit dose and frequency. I assume you're taking the standard dose of 40,000 units/wk?

Good luck and let us know how it turns out.


-- Jim

[dodger1]

I weigh approximately 145. I am going to be taking a shot tomorrow and that will be my 11th.  I feel like **** and there is a delay on my procrit.  They said my doctor did not fax over the right info so I am playing the waiting game.  I go in for another blood test on September 1st which is next week.  Do you think I should go back on the 800mg?  Or should I wait for the procrit to get here?  My hemoglobin was at a 9 and that was 3 weeks ago.  I can not believe how much procrit is.  They told me at the pharmacy that a 3 month supply was 3000.00.  I am so grateful that I have good insurance.  I pay 35.00 for that.  I feel sorry for the people who dont have good insurance and cant afford it.  Is neupogen expensive also?  Thank you so much for all your help.  Sheila

[susan400]

Just for the record, Doctors can prescribe off-label dosing when it's in the best interests of the patient.  I did not just up and decide to increase the Riba on my own.  It was my doctor's decision and I okayed it.  You can't make generalized comments about how these drugs have to always be prescribed only within the FDA recommended doses.  I've tried all the normal dosing on all the different types of interferons.  I've been on the weight based dosing of both Copegus and Ribavirin.  None of these things have worked on me.  I am to the point now, that my doctors have to go outside of the normal range of treatments.  I can't do this 'weight-based' cookie-cooker approach with my treatments because they just don't work on me.  My doctor says that I have significant liver damage and that I can't afford to sit around and wait until something new comes out.  I agree with him.  He is a very good doctor.  

Susan

[HepCat]

Not taking your full dose can jeopardize treatment.  Type 1 is hard enough to beat with a full dose.  I had a severe rash on treatment myself but it turned out to be the interferon and it looked like I would have to quit because the problem was diagnosed as systemic.  Fortunately I was able to continue with prednisone, a powerful cortico-steroid, and finish the treatment and get SVR.  You want to hang tough with the meds but reducing is better than quitting.  Before you reduce you want to try everything you can to treat the sides.  Best of luck with your treatment.

[Lynne5477]

I only took 800mg of Riba daily and WAS a 1B.  I weighed approx 120 lb pre-tx so my dosage was calculated to be around 725mg.  Riba is weight-based.  For those of you that think this amt is too low, you might want to go back and read the dosage instructions.

I will say, though, that you should do all you can to stay at full dosage.  Once you start the Procrit, you should be able to get back to full dosage within a week or so.  I would definitely try to get bloodwork done weekly for awhile.

Good luck to you.

[jmjm530]

Your doctor sounds teriffic!

Just cautionary tale on the riba though. Moving forward, don't let him increase your riba more than 200/mg every two-three weeks.

You have to keep in mind that it takes that long for the new riba dose to affect your hemoglobin. Along with that, you'll need weekly CBC's until you stabalize the riba dose. I'm talking from experience because I also tried a high dose (2000 mg/day) but ended up in the ER because I did not stage-up gradually. High Dose Riba is a balancing act. Like your doc says it will should increase SVR and you should take as much as you can tolerate. However, if you err on the far side, it can end your treatment abruptly and your SVR goes out the window.

The Sweedish pilot study you reference is very exciting but it was only ten people. They also use special blood test over there to measure the level of ribavirn in blood plasma. They are also willing to intervene with blood tranfusions at the drop of a hat. (two out of the ten had two blood transfusions each.)We don't have those tests so in effect we're flying a little blind. Gradually staging is the key in my opinion if you go this route.

All the best and please keep us informed how treatment progresses with your ribavirn.

-- Jim

[susan400]

My doctor told me today that you need to stay on the highest possible dose of Riba that you can tolerate and that means adding in meds like Procrit and Neupogen when required.  In fact, my doctor even increased my Riba to a higher dosage this time around.  So, currently, I'm on 1400mg of Riba daily.  There was a big study over in Europe where they double the amount of Riba and went so far as to do transfusions.  They also used the Procrit and Neupogen.  They went up to 2000mg a day of Riba.  It sounds extreme but in this study they had a 90% clearance rate.  My doctor doesn't want to go quite that high with me with the Riba because the idea of needing to do transfusions seems a bit extreme to him. But, he does want to see how high we can go on the Riba depending on my ability to tolerate it, to see if it might finally bring me into an SVR.  On my next appt. he's talking about adding in the Neupogen since my white cells have dropped so much.  But, the white cells drop due to the Interferon and not the Ribavirin.  The Riba makes the Red cells drop and interferon hits the white.

Susan

[jmjm530]

Secondtime,

There are no doctors here. Just people like yourself fighting hep c, getting ready to fight it, or in a number of cases have fought  and WON!

As to your question, without knowing your individual statistics, it sounds like you're on the right path. Daily infergen and riba seems to be the best hope until some of the experimental drugs come out of trial.

I can offer some general office only. First, you're more of a veteran at tx than most of us, so look back and see where you've had problems. How did you react to the drugs? What were your problematic sides? How about depression? Did you take AD's and how did they work? Was anemia a problem with the ribavirin? If so, make sure you tackle the anemia problem proactively with Procrit, or at least have an agreement with your doctor that he will intervene in time and not reduce your riba dose.

You might also want to check your iron stores. Specifically, your  transferrin saturation and ferritin. If your ferritin is too high, speak to your doctor about lowering it through phlebotomy(sp?)prior to treatment. Some suggest this may help SVR. Also, how is your weight. Best to be at your ideal weight or a little on the thin side. However, if you had weight loss problems last few times around, you have to take that into consideration.

Also, try and have your viral load tested at week #4, as well as 12, 24 and 48. It can help your doctor see how the infergen is working and they might want to modify dose. And keep copies of all your blood tests, you want to be as much in control of things as possible.

Lastly, do you know how long you will be treated for? Extended tx (beyond 48 weeks) is being used for hard-to-treat patients at least with the regular pegs. I really don't know how this relates to Infergen but it might be something you should look into at some point.

If this is your first time here, welcome to the discussion group. We're here to help each other so ask away. You're one of the veterans in the fight and we can learn a lot from you. I already have because I sense your committment and perseverance. These qualities will get you through.

-- Jim

PS There are doctors on this web site but you have to go to the main page and then the "gastroenterology" forum. I think they charge like $16 per question but not sure. A few other free doctor sites as well including:
http://www.hcvinprison.org/forum_new/forum.asp?FORUM_ID=2
and
http://www.thebody.com/Forums/AIDS/Hepatitis/

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[secondtime]

Please, please do not take this the wrong way, but are you a Dr.? or in the medical profession? I dont know what to do//// this is so difficult-  diagnosed in 1997, did the 3x a week shots..only stayed on 4 months... I responded to treatment but relapsed within 1 month. 2002- on peg/ribia 48 weeks- same respnded to treatment but no svr, then in 2003 went on main treatment 1/3 dose---again same.... cdnt take much more..stopped after 1 year...needed a break- off all meds for last 4 months... Am starting infergen daily with 1200 mg riba on 9/4 or 9/11---do you or anyone else have any advise to me???  ia grade 3/stage 4 cirrhoses---- just trying to keep above water until something better comes along..argree anyone????  thank you in advance for your comments, etc

[ASmile4U]

Do you want my left arm too?!  :)

[rifleman]

Snook man is exactly right.  There are geno 1 folks here that would give their right arm to be EVR at 7 weeks.  Don't let them cut your Riba. If you stand tough, they will do what you want.  Sorry to hear about the low HgB.  That's a bear, but the medcicine can fix that.
DJL

[snook_man]

You never want a dose reduction, especially this early in the game. Undetectable or not, it will jeopardize your chances of obtaining SVR. NO DOSE REDUCTIONS!!!! Ask for meds to compensate sx's...
Also question your Dr as to why only 800mg. 800mg of Riba for geno 1's gives substantially lower SVR percentages. The standard is 1000mg to 1200mg depending on weight.
For the Rash, presidone, or a medrol pack. The rash is the body's immune reaction to the riba. It will not go away, but you can make it bearable. Try soaking in the tub in an oatmeal bath, hydrocortisone cream, Benadryl 50mg every 4 hours, wash clothes in hypo allergetic detergent, no fabric softner sheets, and wear only breathable cotton clothing. Also, Aveeno bath products are great. The Benadryl is going to make you tired, but it works to stop the histamines...The Medrol pack you will have to ask your Dr to Rx for you.