Taken off meds :(

Just got back from the doctors - I'm a 1a & have been on a daily shot of infergen & rib 4x per day.  My liver stage & grades are both zero (lucky) I've had hepC for 20 years & am in great shape (39 yr old female)  I'm on week 14 - my levels before treatment were 34 million - my 12 week test results showed my levels to be UNDETECTED (big yeah there!!!! Nice to know all the hell I'm going through is actually working)  However today I found out that my white cell count is dangerously low & that they have to take me off the meds.  I'm scared to death cause I don't want this creeping back in..anyone else go through this - any thoughts and/or suggestions??  I'm getting my bloodwork done again on Monday and the doctor said he would monitor my results & put me back on the meds as soon as my level increased (at a 1.7 now)  BUT when I go back on the infergen, my dose has to now be decreased by 30%.....I hope it will work at a reduced dosage!!

[cuteus]

is it the neutrophils that went down? some drs reduce or stop the meds rather than trying a blood booster and keeping you on tx.  Neupogen is the prescribed medication to boost this count. Did you get to discuss with him the approach he would take should your red or white count go down? If not, this is a good time to do so, before IT creeps back in.

[DoubleDose]

I'm not sure what 'dangerously low' means to your doctor...they all use different standards, and many are not nearly as concerned as others regarding dropping white cells.  There are medications that can be prescribed to boost white cell count, so that you do not have to 'ruin' your therapy...which is just what will probably happen if you are off the treatment medications for any significant period of time.  You are beating the virus, and very much need to finish out the full period planned for a type 1 therapy.  I would really push back on this issue with my doctor if I were in your shoes.  Many of us have gone through very low readings in red cells, white cells, and platelets, etc.  Sometimes for extended periods of time.  It would be a shame to see you relapse during this interim after such a great viral load reduction from very high all the way to undetected!!!
You are obviously a strong responder, and need only to finish out the treatment at or very close to full medication levels.  Usually this is 48 to 52 weeks, and since you made it to undetected in the prescribed time period, you would have great odds of becoming SVR if you could complete the tx.  Going off therapy does not help your odds in any way....and personally I really have a problem with the concept of being off either the interferon OR the ribavirin for a week or more.  This only allows the virus to regroup, and the great work in reducing vl down to undetected gets hammered.  

Please see if they can intervene with medications to boost white cell counts.  Also, see if he is just being very conservative in his approach.  Again, many of us went through long therapies with low, low white cell counts, and had no problems.  Many HCV specialists are somewhat comfortable with low white cell counts, and use much lower thresholds than others.  Of course there are risks involved in every aspect of therapy.

Good luck!!!!  Be assertive on this issue, and see if your doctor can find a way to keep you going. You are a great candidate for SVR!!!

DoubleDose

[jmjm530]

Well, first of all congratulations on being non-detectible !

That said, I'm a little confused (not an unusual state for me these days :) ) on the tx approach your doctor is taking.

First, infergen is a very agressive approach for some treatment naive (fist timer) with little or no liver damage. The other way to view this is that your doctor is very progressive using the strongest drug first.

My confusion is why is your doctor reducing meds if he/she is so progressive/agressive?

For example, a WBC of 1.7 in of of itself is not that bad. In fact, it's what my WBC is now and has been for several months. The important number is your ANC (absolute neutrophils count). Some doctors start Neuopgen when it goes below 1000 but the more agressive treaters wait until it goes below 500 or even 300.

Given your non-detectible status, you really want to protect it by staying on full meds if at all possible. If your doctor doesn't come up with some very good reasons why you can't, then a second opinion is in order.

-- Jim

[GoofyDad]

I agree with DD. I would push back now.

WBC is a good barometer, but is the Absolute Neutrophil Count (ANC) that really tells the story.

Even with blood boosters, I am consistently lower than your WBC of 1.7 - and I remain on full-dose meds. In fact, my WBC/ANC count is down at number three on the worry list -- platelets and hemoglobin are bigger concerns for me, and I'm still kicking right along.

I do see signs of low WBC, but nothing really bothersome. Now if I could do something about my ashen neuvo-morgue look, then I might be happy!

Good luck to you!

[FlGuy]

As Jim stated, my hemotologist focused on the ANCs and not the WBC soley.  If you have CBC results, take the WBC (1.7) multiply it by the 'GR' and them multifpy by 10. That's how hemo got to ANCs.  I received Neupogen and Neulasta (pegylated version of Neupogen) several times during tx and responded quickly. One Monday WBC was 2.7 and ANCs were 653.  The following Monday, after Neup WBC shot to 11.8 and Ancs to 9000.  The sfuff works and should not be the sole reason to suspend TX.  good luck.

[Karay]

THANK YOU all for your wonderful advice - I felt VERRRRRY uncomfortable w/my doctors decision to stop the meds (needless to say)  I've got a call into him & hope to hear from him soon.

[bobbyullc]

THAT IS A GREAT RESPONSE FOR 35,MILLION. YOU MIGHT ASK TO HAVE COPIES OF YOUR BLOODWORK SENT TO YOU SO YOU CAN KEEP AN EYE ON THEM YOURSELF. MOST OF US FIND IT IS A LOT LESS NERVE RACKING TO BE IN ON OUR RECOVERY AND TO UNDERSTAND OUR SITUATION.

BOBBY

[FlGuy]

When docs refer to neupogen they sometimes call if Filgastim (sp?)

[LifeGodsWay]

That is awesome!!! The fact that they diagnosed your Hep C at such and early stage is also such a blessing as well..You will be in my prayers as all of you are. It sure sounds as though your chances of a full recovery are grearly increased by the leaps and bounds!!!
    I was diagnosed with Hep C stage 2a. Early stage with a 70 % chance of cure.  Is there really a cure?  Or remission?  My sister was diagnosed with Hep C as well stage 3c.  She has taken the 24 weeks and is having a very difficult time. Her speech is slurry and has had some bad side effects.  As she went through the first 4 months of treatment she seems to have done quite well if not better than the first 2 months, but as she approached the last 6 weeks it became almost untoloerable.  She is on the Interferon Alpha2/Rebitol(5)daily and one shot weekly.  I sure don't want to discourage anyone by all means...Im just real uncertain as to if this is a good approach..I realize the Doctors tell you this is the only remedy they have(And it is!!)I myself had taken the combination twice..First time I made it a mere 4 weeks. (Terrible symtoms (symptoms) of Chest pains/severe Headaches and felt as though my asophigus (not sure that is spelled correctly) was closing up on me. Then again a few months later..with the same symtoms (symptoms) but became more sick as not holding any foods down for approx 8 days straight. That was approx 6 weeks ago.  I changed my eating habits to fruit / vegetables/ Chicken grilled and lots of Water (Distilled) Hot Tea (Green and Black)and herbs..(Milk Thistle etc..) My viral load count when they first found out I had it was 7,270,000 on August04 and as of last month it is now 5,698. Someone share their story with me...please...

[iceboy]

Hi JM how are you doing. Sense that you you are riddled with fog? is that right.? are you ok

Can you folks give me crach course on Neutrofils. Why do they matter more. (Im seeing my doc tomorrow) and I notice my neutrofils went down to 1 after the first week (dont have any lab results after that but the doc told me he would tell me if there would be something)!!

Karey - please question it and qestion it and question it. I know how difficult it is talking to the docs as they and god know best, and I for instanse just bow and back. !!! write down all these remarks these good peple here say and put it to your doc...

[NYgirl]

Try to make sure you are armed with all the good news about neupogen for your doctor so you present it as a viable alternative to going off the meds.

The more knowledgable you sound innstead of saying "the people on the internet said"....doctors HATE HATE HATE that (I learned the hard way) the better chance you will have of getting an ADDED med instead of taken OFF.

That to me makes NO SENSE since you've reponded so well and from what I gather your numbers aren't THAT drastic.

They have meds for your white and your red blood counts that work wonders and Neupogen is supposed to work so FAST (I needed Epogen for my red..and that takes longer).

WHY not put you on the fast acting medication instead of dropping you off? It's worth a TRY for sure it seems!

[iceboy]

My spelling is getting worse, I know. But here is a councelation for me....

Can you raed tihs? Olny srmat poelpe can.I cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg.The phaonmneal pweor of the hmuan mnid, aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it deosn't mttaer in waht oredr the ltteers in a wrod are, the olny iprmoatnt tihng is taht the frist and lsat ltteer be in the rghit pclae. The rset can be a taotl mses and you can sitll raed it wouthit a porbelm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Amzanig huh? yaeh and I awlyas tghuhot slpeling was ipmorantt!

[Magnum]

I am really happy to hear you responded! I will be joining you in battle in two weeks. If you give your body a rest, you may be able to continue treatment. I know no one wants to hear the word "relapse", but sometimes it happens. Once your doctor takes control of your blood once more, I will be very interested in hearing your results in the long term. Please keep us posted and the very best of luck. I'll be joining you soon.

It's a battle to be sure, but I have no doubt we will all be victorious. I've always felt, and going into my fourth treatment I still strongly feel that a lot of this is sheer determination, mind over matter, and some madness, in beating the side effects and in being victorious. I will not accept defeat, and neither should any of you. Winning is everything. Blind determination is a must, because remember, this is a fight for your existence, and if you value your future, you know what to do....

Magnum

[LifeGodsWay]

Wow that is incredible..I am totally awed by the fact that that was pretty simple to read...I have read letters of this nature through the research i had been doing after being diagnosed with Hep C. There was actually a gentleman who wrote about the side effects he had experienced from the med's.  His writting was so very much the same..A real eye opener..Thanks for sharing this..

[jmjm530]

Not srue of the tceh raesnos but my med taem is raelly olny
cnoecnred with ANC (nuets asblotue) and not WBC. Yuor "1" --
wihch my lbas wluod rcerod as "10000" is ecxllenet. I've been dwon as low as 320 ANC and am cruertnly in yuor blaplrak. I'm diong OK, atcaully sntiartg to get out in the rael wrold. Tknahs for aniksg.

-- jjmm

[NYgirl]

Wow you are out and about?!  HOld the PHONE!  Stop the presses!

THAT IS JUST FANTASTIC NEWS AFTER ALL YOU HAVE BEEN THROUGH!

That's like Undetectibles and other FANTASTIC things...and you haven't said anything?

How's your blas? Uh I mean labs?  You just made my day!

[cuteus]

hello and welcome!

when you wrote stage 2a, I am thinking that is your genotype, correct?The symptoms you described when you were on tx sound a little like anemia might have hit you hard early on. it happens to some, and drs don't Rx anything to boost the red count until the hemoglobin gets quite low.
if you decide to treat again, make sure to get copies of all bloodwork and track the changes yourself, that way you can be proactive and insist on intervention early.
take care

[jmjm530]

Yup. Been getting spurts of this strange "normal" feeling the last couple of weeks -- hopefully a preview of life after h*ll. LOL.

It may not sound like much, but I haven't been able to drink coffee for the last ten months because of the GERD. Yesterday, I had my first cup with breakfast -- ah the little things give such joy...

Of course, I've never been good at leaving well enough alone, so I'm thinking of popping an extra riba or two a day until tx is over.

Hope this finds you well.


-- Jim

[FlGuy]

I think the last I read you were deciding when Tx ends - do you have a date?  I think you were bouncing between 42 and 48 wks.

[jmjm530]

I think so. My lab range for ANC is 1500-7800 cells/mcL. Yesterday's labs put me at 1241 which I think would be 1.2 on your scale.

-- Jim

[jmjm530]

I'm just did my 42nd shot last night. I popped A LOT of riba at the beginning of tx (2000 mg/day) but now I'm at 1200 mg/day and thinking of staging up the riba a little to week 52. If I remember correctly, at one point you were pondering the idea of stepping up the riba and/or Peg a little past your "official" 48-week mark. What did you end up doing?

I'm also toying with the idea of staging down the peg from week 48 to let's say week 60. But as they say it's a work in progress.

-- Jim

[jmjm530]

The riba lesson early on has not been forgotten. It is for that reason solely that I have not increased my riba again until week 42. In fact, I dropped down from 1200 mg/day to 1000 mg/day for about a week last month when I felt I couldn't make the distance.

But my feeling now is that if I screw up  it's OK because I've gotten the my 42-week bottom line number already under the belt.

Regarding riba early on versus later. You're correct that the consensus (at least in this country) is that riba is more important early on. However, some anecdotal data coming out of the Sweeden  suggests that slow responders can benefit from riba later on.

-- Jim

[iceboy]

guy

[jmjm530]

I'd just like to add for anyone new to this subject that self-medication without your doctor's supervision/approval is a risky road with unknown consequences. IN OTHER WORDS DO NOT TRY THIS AT HOME. LOL.

For the record, my doctor was onboard when I did my initial riba experiment with blood tests once or twice a week. Even so, we were both wrong as the riba staging was too agressive for my body to handle.

-- Jim

[iceboy]

What is the recomended doses. My doc says 1000 mg for up to 165 pounds of weight. Does that sound right.

[jmjm530]

There are a couple of weight-based formula's floating around, but 1000 mg for under 165 lbs and 1200 mg for over 165 lbs is one of them for at least geno 1's. Some recent studies suggest 800 mg is Ok for lighter folks and I believe go up to 1400 or 1600 mg for heavier folks like over 200 lbs. Currently I weigh 153 and except for an early week at 2000 mg and a later week at 1000 mg, I've been mostly at 1200/mg. My doctor has approved all dose changes although my NP for some time now has thought my riba was too high. Two consulting doctors also told me my riba was a bit high but basically indicated that if I could handle it, go for it. And while I've had h*ll with side effects for most of the past 42 weeks, I think it's been more the Peg than the riba except for anemia very early on.

-- Jim

[jmjm530]

Good memory. 42 weeks was always the bottom line using the
"36-week" rule, as I was non-detect at week 6. Recently my doc suggested 52-weeks based on the "46-week" rule which frankly I've never heard of.

In any event, I took my 42nd shot last night so I feel the rest is gravy. Current serious goal is to treat between 48 and 52 weeks with full meds (possibly a little xtra riba) depending on how I hold up. Also toying with the idea  of tapering the peg (from  full to 3/4 to 1/2 dose to 1/4 dose) from week 48 to 60 while staying on full (or perhaps xtra riba)  but I've got some more research to do in that regard, not that anything definitive exists.

Hey, I screwed up badly when I started tx (ended up in the ER by taking too much riba) so I mine as well finish the same way. LOL. Thanks for asking.

-- Jim

[FlGuy]

Jim, I remember the riba troubles you that cause you to spin.  Be careful.  It sounds like you've found some stabilizing balance lately.

[Snookmiester]

Hmmm, popping a few extra Riba on the home stretch? Theory sounds familiar man..
What week you on anyway? I think your pretty close to the finishline right?

[iceboy]

thats really funny.

The range is between 1,9 - 7,0 x 10E9/L. Me being 1,0 guess it equals to your 1000? So you have been down to 0,3 in that range, right.

[NYgirl]

you just made me laugh so hard.  Only YOU would be like ah I'll pop a couple of ribas...the rest of the world is in such a complete PANIC about even taking a few! hahahah!

I have to tell you as I am awaiting the 12 week results - I've NEVER been more glad that I listened to you and got the doctor to UP my Riba dosage.  Itches, anemia EVERYTHING aside...I'd rather suffer THAT and get an Undetectible than have it easier.

(I better be undetectible NOW that I am insisting I am!)

I can't thank you enough for the GOOD advice.....I can't imagine that I would have had the results that I have had so far with less.  It was completely and totally worth it.

So I sort of "get" the popping a few extra - I've thought of it myself.

You've converted me it would seem from being afraid of them to "what the heck a couple more won't do anything but help" LOL

Especially since I am loaded up on Epogen!  ;-)

So glad to see you able drink coffee...lifes simple pleasures are  the BEST aren't they?  The things we take for granted every day!  Congrats on the coffee I couldn't be more happy for your good results lately if they were mine.

I mean that.

Debby

[jmjm530]

I had two cups with breakfast today :):)

You know, I was never a big coffee drinker so it's not so much the coffee as entering the "normal" world. Nice place, the other side of my couch, I had almost forgotten it.
---------------------------

BTW I don't recommend more riba than your doc prescribes for a number of reasons. The extra riba I'm "poppin'" are within limits that were previously discussed with my medical team, plus I waited until week 42 to do so. It was a conscious decision to wait until week 42 because I realize that taking extra riba can backfire resulting in severe anemia that can potentially halt treatment prematurely. But with 42 weeks under my belt, I can live with that consequence should I mess up. That said, today I went back to my normal dose and will be making dosage decisions week by week depending on my labs and how I'm functioning.  

-- Jim

[SJL]

I don't know guys but I think changing medication amounts is dangerous. With all the unknowns, the Doctors are pretty much on the same page with dosages.

I have relapsed twice now and I would say to definitely stay on the 54 weeks, for 1A's. Also, try not to reduce any dosages. I have done 48 weeks first time, with Riba reduced to 800. The second go round I did 52 weeks, with reduced Riba, 800, but daily injections of Infergen.

I tried Pegasys maintainence but the side effects were the same & the Doctor stopped me at week 4.

Their are no magical numbers I am sure, because everyones body reacts so differently. I am now falling on the time? Of course, I did this also throughout therapy.

I am beginning to feel more like myself, but I would sure like to stop this falling c---! 8 times. (if I didn't have some body cushioning, haha (fat), by now I would probably have broken everything their is to break.

Please be careful with meds, we all know how dangerous they are. My advice is to

Stay on full treatment and full prescribed dosages,if possible.

Hang in there and I am praying for everyone.
SJL

[NYgirl]

Yay for Jim as I sit here with my cup of coffee I know I am not alone in this little treat :)

I would NOT up the Riba if the doctor had said not to.  This decision was thought out and based on several decisions and facts that I learned.

One being the Riba dosage in the first twelve weeks seeming critical to SVR.

The decision was based on the fact that the doctor prescribed "weight based" and the manufacturer "recommended" dosage was the higher.  I asked to try the manufacturer recommended dosage.

He thought about it and then told me IF I could not tolerate it we would lower it later AFTER trying Epogen or Procrit.  I liked that answer a LOT.

PS It did work btw.  when I dropped from almost 15 to 9 in a bit over a week they put me on the Epogen right away and then doubled the dose...and now I am still on 1,000 Riba hoping to do this until completion and SVR.  I see no reason not to.

I am a 1A and 1B so I need all the help I can get!  :)