Help:{, ready to quit

[Lady Lauri]

FIRST, ahead apologies for whining , especially as I am 2b, great odd's, less time, etc.
   I have TRIED to 'buck up and shut up' , I am USUALLY pretty tough....BUT......
      I feel like I am slowly dying here! Seriously! I am already 98% bedridden and that 2% up is only as I don't have a bed pan (LOL, TRYING to keep humor!)
In the past 7-10 days...... put myself totally out of work, could not even drive there! (30 miles), let alone work 5-10 hours. Had decreased to half time the weeks before already. Now 100% out. Can't do it, no way :{
   I TRIED hard to keep working, keep picking up the house, keep SOME normalcy. I can not physically pick up a freaking vacuum!?? I went to Publix TWO blocks away last night, about fell out , came back and couldn’t move again, laid here thirsty, couldn’t get up! (also backed into a tree, put my keys away for now!) WHAT is up here?
I am ONLY 5 weeks in, 128lbs., 180mg pegacys, 800 Riba (lower dose, I KNOW!). 2b, stage 2-3.
I am bruising where I have done NOTHING but lay in bed to bruise. I have a bruise on my stomach getting bigger, with terrible stomach pain last night. I HAD been blessed thus far, in little nausea, that’s over. Last 2 pill's last night didn't stay down. Not eating. I am literally afraid to take it anymore . I went into this commited, ready for h*ll..... I am so-so sick and weak so fast and  just lifting my arms feels like they weigh the  whole 128 :{ My head is going to explode at any time either from the headaches or ‘black smog’ in it! Every muscle I have throbbs, every hour! I am not one to be beaten down, I know how to fight, I am loosing it! Alagirl ….you said your having severe sides? I even agreed to try lexapro but that is not going to take away the ‘weak, sick, dying here’ feeling. You also said ‘your body tell’s you‘, etc.’, well last night my body was telling me something! Quit??
         Is this normal to go 'down' so fast.? Waiting on my 4 week labs, getting very worried I can't do this AND in a trial, anemia hits, I am just OUT anyway.
**** sparrow, you'd listed the stats on week 16 versus 24 (thank you) , at the end......is it my understanding that the difference was actually 6 % in SVR? (can't go look or will loose my post!). While that can be a lot, if this is hitting me so hard, perhaps it isn't such a bad 'chance'.
From all I have read, sides 'come and go', good days, bad days, I am having ALL bad days, not one hour of not feeling so sick, and I don't mean the flu sick, I mean like I am dying here sick.
  What do I do? Did anyone else have to spend the entire time in bed, totally? Is this what my tx will probably be like the whole time?
I know I have to wait for those labs, but I truly feel something isn't 'right' in going DOWN so quick.
Afraid to keep going, afraid to quit (even my son said 'your not a quitter' mom, something’s wrong!)
   I know you all say don't 'skip' meds. pill's.......it is 11:30 am and afraid to take them now? Could I reduce myself a few days until I get into my Dr.?
I have e-mailed them, waiting to here.
     What to do???
                                                                         LL

[Andiamo1]

I have treated quite a few times now and this last one was the worst.  I spent most of the first 12 weeks in bed.  Now I am up and around.

I went down about as quickly as you did, but once my Hgb stabilized at 10.2, I started to get used to it and felt better.

I hope the same happens to you and you feel better soon.  Don't give up yet. Get your latest labs and talk to the doc about rescue drugs.  It is best not to reduce anything for the first 12 weeks if you can hang in there.

[Lady Lauri]

   Bless you in treating several times.....you people are so TOUGH, which is why I hate whining already, but guess if your feeling it....different than hearing about it.
  I don't know my lab stuff yet, as in even what Hgb is?? I do know I am in a trial, albumin versus Pegasys (got Peg) and can't have rescue drugs.
IF it is that my Hgb needs to stabilize (get more normal?) , is that possible without rescuse drugs?
As in things drop fast at first than possible stabilize out on their own? Can anemia get 'better' without the rescue drugs?

  thanks, I am trying to keep in this ....I have to , as we all do.

                                                                             LL

[pitter]

wow I am sorry you are soooo sick...you poor thing...did you tell your doc?
see that is why I am so afraid of the tx..I get like that from meds...
man I hope you find some relief..hopefully you have some friends around to ask for help..I just prayed for you.

[Proactive]

These are some kickass drugs we're on, and you are allowed to whine all you want..Sounds like you have come to the realization that you aren't invincible, that is one of the hardest parts of treatment,welcome to the club!!! Now take your pills--with food-force yourself to eat, and maybe call the doc on Monday and report your sides...Sounds like you might need a cbc to put your mind at ease about anemia....Takes awhile to get use to the hgb drop, even if only a few points,,good luck and keep us posted..;^pro

[spcecst2]

Quit!

[CockSparrow]

Sorry you are going thru this. I think Andiamo1 is right you appear to be suffering Sx from anemia more so than from the IFN.
The first thing I would do is call your Doc and tell them whats going on.
2nd reduce your Riba. Drop by 200mg increments (one pill at a time) till things stabilize. Try taking the Riba in the middle of a meal as this will help with the nausea.
Aside from the fact that this is Tx protocol there is some evidence that reducing Riba for G2s and 3s doesn’t have the same impact on SVR as for G1s. Now hopefully this will get you back to the land of the living without impacting your chance of SVR much. Now if you have to stop taking the Riba that’s OK too if its not for more than a week.

Next depending on your 4 weeks test results. If you are RVR then the Riba reductions wont make much difference at all. Your SVR chance would be less than 6% lower than doing the full course. If you are still detectable then, spcecst2’s suggestion of quitting makes sense as you can stop, regain your strength and go again only this time with EPO.

When you post your 4 week results I can go into more detail on your options so long as you can make it that far.

Hope this helps
CS

[orphanedhawk]

I started tx weighing 105lbs, which at 5'0" isn't bad. I was doing 180 mg peg and 800riba. The first 5 weeks I went down hill quickly, exhausted. My platelets were dropping so much that my doc wanted me to quit. I switched to a specialist who dropped my interferon to 90mgs. This helped so much.

One size doesn't fit all. Maybe your dosage is too high for you.

There's more to my story but fatigue is the main sideeffect for most people. My energy came and went during tx. I learned to do what I could, when I could. I lost 6lbs but it would have been more if not for my husband being such a good cook.

Exercise on tx? Think about lifting my arm. Think about lifting my leg. I did learn to do meditation! And when I could I would drag myself outside and walk.
I don't know if this helps but you are not alone nor are your complaints uncommon.
If you are UND at 4 weeks you might consider stopping early.   Good luck

[Andiamo1]

spec: I don't know who you are but you are certainly irresponsible to make such a recommendation without being a doctor.

LL: Your Hgb won't recover without rescue drugs, but you may get used to  a low Hgb. I agree with what CS has said if you don't start to feel better soon.  I also am in a trial and can't have rescue drugs, so I know what you are going through.  

I think you will make it with some moral support and sound medical advice.  You should feel free to whine any time you like - LOL.  On this board, it really helps!

[tedinoregon]

Sorry to hear about the bad SXs.  I hope things get better.  With nausea, Grandma suggested taking pills with nuts and I must admit this has been a tremendous help (Thanks Grandma!).  

As far as eating goes, I have been forcing myself to eat because I travel sooo much with my job.  I never eat fast food junk, so in order to make sure I get a meal in when a restaurant isn't available I buy the PowerBar Protein Plus Bars.  They have 300 cals and about 23g of protein.  I usually wake up, take my pills (Riba and daily vitamin) along with some nuts and a PowerBar.  At least I start out the day with some good calories in my belly.

Consult with your Dr. asap before changing your drug regime (lower Riba dosage).  He went to medical school/residency and paid for his knowledge.  Let him make the decisions with regards to your treatment.  You could also consult with your pharmacist if you want some advice before you see your Dr.

Hang in there and ***** all you want.  But don't give up!

[alagirl]

You know what, whine all you want.  I am fully horizontal and puking this morning after last night's pegasys and my budding case of RA leaves my joints in my fingers such that I can barely type this.  I am this close to selling my house and taking the cats, bunnies and my son to either my dad's or my mom's and shacking up with one of them for the duration.  Cleaning the house?  Fhugettaboutit.

I am already dependent upon the kindness of friends for that one as my house is 3000 sq ft and I have a 19 yr old son who works and goes to school full time.

[meki]

Hang in there... You sound just like all of us.

Sometimes it's a fast drop - others it's slow.

I spent most of TX in a mental fog - unable to conciously form a serious thought or anything human-like in thinking it was pretty sad.

But the other sides merry-go-rounded for me... One day up - one day down --- one day sideways.

I waited until I got up to decide if I could work or function.

Just hang on... Until or unless your docs say get off the meds - hang in there -- it ain't a walk in the park... for some of us.

Amazing that some go more than once... just amazing...

But --- make sure if some sides (breathing, etc.) get too bad - see the ER immediately. Know your body.

Hugs --- much hugs!!!

Meki

[spcecst2]

Your post seems to suggest that someone would take the recommendation from my one word post! Are you suggesting that we have people that slow on here! I would rather believe that Lady Lauri would read my simple post and realize that she’s not going to quit and it was just a simple slap of reality! And before you run off with the next post about me not knowing how she feels, I’ve got about 140 +/- weeks under my belt and pray that everyone successfully completes their treatment with minimum sides and attains SVR!  Now get a life!!

[hack41]

I am a week ahead of you week 1 and week 5 sucked equally. I got my 1 month bloodwork back and the numbers look good. Week 6 is going well mostly I think because of the good news. It is still tuff hang in there you can do it.

[Andiamo1]

Take some ADs and relax.  Its still a good life even though we have to treat with some bad stuff.  I am glad to hear that  you are praying for people.

[wyntre9]

The good news (just trying to be optimistic for you) is that there has been a lot of hyptothesizing that the severity of early SX may predict eventual outcome.

So, if that;s true. . . .

But I understand completely.  I'm at week 45 of 72 and it's been a slow gradual downhill slide.

If you have anything else going on, like a stomach virus or the flu, it magnifies the TX SX.

Talk to your Dr. ASAP and try to hang in there.  

wyntre

[FullOfHope77]

Just one comment on the rescue drugs... if it's like the Prove 3 study you can't take what most people call 'rescue drugs' for HGB etc. However, you can take relief drugs like opioids and can get you 'relief' albeit temporary. The problem is later you have to deal with that on it's own. But i subscribe to anything that keeps you doing the tx is worth it as it's your only chance. Bensodazipeens (xanax, valium, etc.) are great little family of rx that can provide relief for a few hours at a time. Some mixture of these may be the ticket but worth trying before you give up. As I believe that you just need relief from the tx.

[glucklich]

As I sit here eating dark chocolate that I cannot taste and dried pineapples that I think are sweet reflecting on only having 8 more Vx pills of the same  Prove 3 trial Andiamo1 is in I looked back on what I wrote in my journal at day 5:

"The treatment has its peculiar side effects. These begin with making me constantly feel like thrice the worst flu I ever had, in tandem with gastrointestinal spectaculars that you would not have ever dreamed up yourself. These took the Creator. Add the need to cry at anything in the slightest way touching and the total lack of restraint to hold in any rage whatsoever, but take away all the energy you need for anything, and you have the wire and spit that hold my seconds together.

      The maybe wunder pills themselves are the size of small lemons. They instantly dissolve into sloppy ooze preventing the less gifted from choking.

      If you have never done the standard USDA approved combo tx, you really don't have any clues about what is going to happen. What you do have is suspicions gathered from rooting about the internet and the library. The doctors themselves have no feel to their words. It is always that way with them. Impersonal and outside. If you are going back in, you do know. It’s personal. You know Week one and two's courage will dissolve by week fifteen. Today’s foolishly running outside and shaking fists in air shouting  " Is this all you have!" will give way to kneeling anywhere and begging for deliverance.  "

Well with 24 down and 24 to go I know again what everyone learns on this tx.Just get through today and work on tomorrow tomorrow. Ask for help form the doctors and medications to make all of this endurable. This is serious stuff and all but the extraordinarily lucky really don't know how tx will end.

I hope you can get the help you need and stay with it all the way to SVR. With some good luck you will be looking at 24 weeks before you realize it.

[CockSparrow]

With nausea, Grandma suggested taking pills with nuts
-------------------------------------------------------------------------------
Normally I would consider this excellent advice. Riba should be taken in the middle of a meal and nuts contain high levels of fat. This is a good thing as Riba taken with a high fat meal increases absorption.
Lady Lauri doesn’t need more Riba Absorption at the moment more like the opposite.

CS

[tedinoregon]

I was merely commenting on a common way to combat her nausea.  

"Lady Laura doesn't need more Riba Absorption..."

I'm not sure a lay man should be giving such advice, unless you did go to medical school.  No offense, but I think her Riba intake should be decided by her doctor.  This forum is great for support and advice, but the ultimate decision on TX methods and dosage are that of the physicians.  In America that means about 7 years of med school and residency.

[desrt]

What were your CBC #s for weeks one, two, and three? I hope I'm missing something here, but it sounds like week 4 is going to be your first bloodwork? Scary if true.

[CockSparrow]

In America that means about 7 years of med school and residency.
----------------------------------------------------------------------------------------------
I think you will find its the same in most western countries.
Ask youself this. How much of those 7 years is spent studying HCV. Not many unless you specialise in it.
Asking a pharmacist for advice on HepC meds is somewhat iffy as well.

If you read my original post the first thing I said was to contact her Doctor.

CS

[FlGuy]

The decision to treat is a big one.  One gathers available information and professional advice and some not-so-professional advice.  But, when it comes down to the final determinant it's a personal decision after a person has weighed all the available input.  The decision is the one that's right for the decider.  The decision to conclude treatment is no different.  LL, do what's right for you.  It's a decision that you must make.

[froggydan]

Stop the whining and the self-pity ! i thought you was such a warrior in your life...but you're just dont stop complaining and weeping,you big shot !!!

[tedinoregon]

Obviously like many you feel the need to defend yourself because I said you are not a doctor.

I did read your first post and that is what I was elaborating on.  You state:
"The first thing I would do is call your Doc and tell them whats going on.
2nd reduce your Riba. Drop by 200mg increments (one pill at a time) till things stabilize. Try taking the Riba in the middle of a meal as this will help with the nausea.
Aside from the fact that this is Tx protocol there is some evidence that reducing Riba for G2s and 3s doesn’t have the same impact on SVR as for G1s. Now hopefully this will get you back to the land of the living without impacting your chance of SVR much. Now if you have to stop taking the Riba that’s OK too if its not for more than a week."

You are not a Doctor or Pharmacist, so you should not be telling anyone how to "dose" themselves.  And you go way beyond telling her to contact her doctor with your statements "drop by 200mg increments" and "if you have to stop taking the Riba that’s OK too."  You are not giving medical advice, you are instructing someone and you are not a licensed doctor.

I have an MS in Biology and work with Pharmaceutcal companies R&D labs (HPLC/LCMS Application Specialist), but irregardless I am not a doctor or pharmacist and do not have the right nor license to give medical instructions.  Whether I stay at a Holiday-Inn Express or play a doctor on the internet, the only person she should be seeking her medical and dosing regime from is her doctor.

Irregardless of years a doctor spends from whatever country, 99.9% of Doctors have more knowledge about the liver, labs, medicine, etc. than you or I.   And whether it be basic medicine or specializing in the liver (which is just a label because what really matters is are they "Board Certified"), they probably know more about this disease than either you or I.  And it is assumed her Doctor has had specialized training being he is treating her for HCV.  So I think it is best to leave the "doesn't need more Riba" comments for yourself, because I am sure you wouldn't want to jeapardize her treatment and possibilities of success.

Asking a Pharmacist is not exactly iffy either.  Again, they usually possess a Pharm D, 6 years of pharmaceutical study (pharmacology, pharmaceutics, pharmocokinetics).  In actuality, your pharmacist knows quite a bit more about the drugs your doctor prescribes than your doctor.  Most Doctors have a six week course in Pharmacology during medical school.  And again, they are more qualified to give her guidance.

[veggie]

I'm sorry to hear you are having such a rough time. The ribavirin messes with your head. If you have to quit the treatment then you have to. But can't you get some help from your Dr.? I sure hope you feel better real soon.    

[PSP-n-Me]

this name (veggie) used to be my name on here a long time ago- for those that think I have made a new name it is not so - the only name I have on here for a year is PSP-n-Me

Beth *dip* veggiedip all the same - veggie not me...

[ladywhy]

wow...there is a lot of this going 'round....must be the meds...;0) This has been a bad week for me too. Emotionally, mentally and  physically etc. etc. At the same time...i am so thankful to find humor where I can and this thread has given me a chuckle ...spec, Andiamo, ted, and CS..especially froggydan.....we so need one another....and yet we are strangers. It's an interesting concept. Froggydan, how are you holding up? I hope we all get better and the coming week may be easier on all of us.
God Bless
Y

ps> This weekend especially...we are like one large bickering, disfunctional, loving family.

[ladywhy]

wow...there is a lot of this going 'round....must be the meds...;0) This has been a bad week for me too. Emotionally, mentally and  physically etc. etc. At the same time...i am so thankful to find humor where I can and this thread has given me a chuckle ...spec, Andiamo, ted, and CS..especially froggydan.....we so need one another....and yet we are strangers. It's an interesting concept. Froggydan, how are you holding up? I hope we all get better and the coming week may be easier on all of us.
God Bless
Y

ps> This weekend especially...we are like one large bickering, disfunctional, loving family.

[Lady Lauri]

Stay off my threads. Your one of the people I would leave IN the streets, much like the maggot that used to get kids on drugs for their $. Yeah, I'm a 'big shot' in trying to help young people stay away from, off drugs
And your what?  .....  a bitter old 'man' with little of ANY importance to say at all and NEVER anything to back it up.

  Stay off my threads, I have NO use for a person like you or your opinion.
I assure you, I'll stay off yours. Kindness does NOT mean weakness..... and I have NO kindness for you.
                                  SEE YA' 'BIG GUY"

                                                                                        LL

[Lady Lauri]

P.S. And seen a whole lot more  kind, considerate, joking, cheerful post from me than ANY of yours. NONE from you. Just nothing like a man that runs his mouth, from far away.
  
  What p'd you off so much.....I do something with my life and you don't?
Keep your nasty attitude out of my conversations. I don't want or need your opinions, tough guy.

Now on to discuss WHAT we're all here for, discluding you.
                                            Nite

[CockSparrow]

You have a lot more trust in the medical profession than I do.
What you a saying is that there has never been a Doctor that has dose reduced the wrong drug, Allowed someones hgb to drop to dangerous levels or prescribed iron to offset haemolytic anemia. Why because they have spent 7 years in Med School and done 3 years as an intern, and are qualified to treat HepC.

OK I believe you, Doctors are always right and never make mistakes.
I will remember to ask my Chemist about a drug he hardly ever dispenses next time I need information on it. Especially as I cant read the Product Info sheet.

Strange thing is I actually have a lot more respect for Health Professionals than b4 I started my last round of Tx. It blows me away the amount of knowledge they have to retain and I have absolutely know idea how they remain current with medical advances and still find the time to treat patients.
This has something to do with my lack of faith in Doctors as no one can know everything about every disease. I also now have an understanding of why the health system can be such a pain in the Arse to deal with.

You don’t even take you own advice
I was merely commenting on a common way to combat her nausea.  
"Lady Laura doesn't need more Riba Absorption..."
I'm not sure a lay man should be giving such advice, unless you did go to medical school.  No offense, but I think her Riba intake should be decided by her doctor
-------------------------------------------------------

The following comes from the Pegasys product Info sheet
Effect of Food on Absorption of Ribavirin
Bioavailability of a single oral dose of Ribavirin was increased by co-administration with a high fat meal. The absorption was slowed (Tmax was doubled) and AUC and Cmac increased by 42% and 66% respectively, when Copegus was taken with a high-fat meal compared to fasting conditions.

Now I may be a lay person but whats wrong with quoting the Pegasys Info Sheet. Your advice to take with nuts (nuts are high in fat) would increase Ribavirin absorption. It is excellent advice normally though, but why didn’t your Doctor give you this advice instead of Grandma.
Taking probiotics also helps as it replaces the good bacteria killed off by the drugs, but I cant say that.

As for advising to dose reduce the following comes from ML Shiffman.
However, it is now recognized that small reductions in the dose of peginterferon alfa and/or ribavirin, particularly after patients achieve undetectable HCV RNA, are less likely to impact SVR as long as dosing is not interrupted.

Although the dose of ribavirin was reduced in 40% of patients in the control group compared with only 10% in patients taking epoetin alfa, the percentage of patients who received more than 80% of the cumulative ribavirin dose was comparable in the 2 groups. This is because the ribavirin dose was reduced in only 200-mg increments every 2-4 weeks, and most dose modifications were performed after patients had achieved undetectable HCV RNA

Some patients develop adverse events with such rapid onset and severity that there is no choice but to temporarily interrupt treatment. The approach to such patients is not to restart therapy immediately but rather to allow the severe adverse event to resolve while therapy is withheld and then plan for retreatment with the tools necessary to prevent the particular adverse event from occurring again or being as severe and debilitating. In some cases, this will require that growth factors such as epoetin alfa or granulocyte colony-stimulating factor be approved and ready to utilize at the onset of therapy. In other cases of adverse events such as depression, the patient will be required to receive frequent ongoing psychiatric care or medications to address severe pain or severe migraine headaches. If the reason for the severe adverse event can be corrected or more effectively managed, then these patients are good candidates for retreatment.

The advise I gave was sound, came from medical sources and based on the available evidence.
I would have preferred it if this discussion was held after LL posted her 4 week blood test results as until then this is all a bit of a guess.

I will admit I could have worded my post better it wasn’t intended as medical advice more what lady lauri’s options were and that if she needed to dose reduce it wouldn’t impact SVR chances much so long as she is RVR. So no I wasn’t my intention to impact LL svr chances. The opposite actually.

I am sorry we got off on the wrong foot as I don’t actually disagree with you that much.
No one should treat themselves, nor take advice off the internet without consulting their Doctor.

Wish you Well
CS

[Lady Lauri]

Before I go into more questions of which I posted for, Thank you ALL for responding , encouragement, advice, which is what this site is for. And this side IS for the hard days, help me days, a joke or whatever else our battling souls and bodies need.
ALSO, KNOWING I am new in this, many of you have researched better, for years, and I totally believing glucklich's words ..."The doctors themselves have no feel to their words. It is always that way with them. Impersonal and outside.".......and that anyone having done tx DOES have some different exp. and knowledge than anyone never having felt this.......so I do value MOST of your insight, opinions, advice, while trusting my Dr. (BUT, a TRIAL , see below!)........ I also know to take any info., help, advice and add it with the Dr., my own thoughts and THAN make the decisions. It ALL helps. (nor would I 'quit' on one persons 1 liner answer, but bear in mind, there are 21 year olds here, and all walks of life, maybe someone would take that as the ‘advice’. Tho I got it as you meant it!)
    I also feel my main problem is my body not handling the Riba well. I do not understand that a 180lb. Person needs 800mg. and why a 128lb person would HAVE to have that also. When I asked last Monday if I could reduce to 600mg., she gave me a questionable look with the 'must say' answer....in the trial lab....of "no, 800mg is the standard for type 2 in this trial". I AM in a trial, do not get rescue drugs and they will surely not lower my dose without the 'okay' to do so. Now in a regular tx., given my type and body weight, they well could have reduced me to 600mg. but I believe we all know a whole different set of rules in trials. With that said....a HUGE concern is anything that would make them take me out of trial and/or them not reducing me to where I can deal with it. Going from 3 days working to-within 24-48 hrs. of bedridden IS a concern, along with several other sides suddenly slamming me. ( I seem to have a 'tude' here, set off  because we post for help, advice, opinions, NOT smart a*s, nasty comments! sorry nice people.)
I appreciate all advice, I have decided to cut my Riba by 1 (200mg) as otherwise I am going to ER...playing it SMART, if not better tomorrow, heart irregularities, palpitations 10 times a day with MVP also, THAN I will see the Dr. Monday. I do understand this should be done with their approval, but I am making the choice to see if it makes a difference in few days.
Perhaps those that are not on the site to HELP the new tx-ers, newbies, ol timers having a hard day, with questions, worries, concerns should just stay on the other ‘info. Only’ side :} ???
  Thank you all and now for some separate questions.

                                                                                                  LL

[CockSparrow]

I AM in a trial, do not get rescue drugs and they will surely not lower my dose without the 'okay' to do so. Now in a regular tx., given my type and body weight, they well could have reduced me to 600mg
-----------------------------------------------------------------
With your body weight 600mg  could well be the right amount for you. You are taking a lot more Riba per kg than I was.

CS

[CockSparrow]

Remind me not to P!ss you off. Whats froggy got against you anyway.
CS

[Lady Lauri]

  I e-mailed , called today trying to get my 4 week labs, but to no avail. I have an emergency #, but felt it could wait until Mon. and the on call probably couldn't get them.
As I threw up my 2 night pill's last night within @ 30 minutes, than did take 600mg today, I do have less in the system and I do feel I am having the 'rapid onset and severity' ( have read a lot also) , so along with advice -supported-here and along with me already asking to reduce last week I made that decsion. If my 4 weeks don't show RVR, than at least, as quoted, I can 'heal' a bit and pick up the pace without total interruption. There is several here that I know research for years and I appreciate also giving documentation, studies. That's why I ask, as I don't have years of studies, knowledge to look on. So thanks and I'll post labs as soon as I get them.
Also, while we have to trust Dr.'s in things, had too many misdiagnose me to put ALL choice's in thier hands, I WILL have a say so and had my sister not put all faith in one, she wouldn't have been in chemo past 7 years!

Tedinoregon, I appreciate your concern that I check with a Dr. first and in this trial, my nurse and I have a way of 'conversing' with all the others in that lab room of which she'll give me a nodd, smile and than the answer she is supposed to give and the other day, when I requested to lower, it was that smile and the 'no, standard in THIS trial is' and than on to 'if' reason they can lower it. My gut was she felt it'd be okay, may be needed. With that and all else, i have to cut back at least one and see if it makes just some change. Tho I should wait till labs in. And thank you for the boost and I can ***** all I want to :}. When you need to, I'll be here : }

desrt..... In this trial, have had week 2, 3. 4 labs, but not supposed to know until week 12. 'We' have snuck one in tho, so I will at least know my 4 week results (as in RVR, UND0 especially with the sides slamming in. When I asked about all other I CAN know, was told 'all within the norm for tx"? So getting them all, or what I can have and psoting for help reading them. Good question :}
                                                                            LL

[Lady Lauri]

No idea, and that's what's  p-ing me off. The judgement, non informed opinions and sarcasm are like I touched a nerve. He was a sarcastic a** on another of my post and prefer he just stay off mine!
You have something to say, back it up or shut up! I asked, thus far nothing to back up the insulting remarks. Personally, I see a bitter guy.

No time for the nonsense!

                                                                             LL

[Lady Lauri]

fl guy.....thank you and well said....all a personal decision.

Alagirl, you too, ya' need to 'whine', I'm here :}
Do have lots of support, help, just hard to get used to being such an independant 'warrior' :}
Feel better too.

Meki..... you are so good at being comforting while to the point, LOL. Get a kick out of your post.
While you did much more tx time than I have to, sounds like you hit it all on the head. I could handle even 3 days down, 1 day up! Need 1 day up!!
                        hugs back to you

wyntre....................
The good news (just trying to be optimistic for you) is that there has been a lot of hyptothesizing that the severity of early SX may predict eventual outcome.
Good thing to 'push forward' with! And you in 45 of 72......good thing to make me buck up :}
                       Thanks
                                                                             LL

[Lady Lauri]

     If you have never done the standard USDA approved combo tx, you really don't have any clues about what is going to happen. What you do have is suspicions gathered from rooting about the internet and the library. The doctors themselves have no feel to their words. It is always that way with them. Impersonal and outside. If you are going back in, you do know. It’s personal. You know Week one and two's courage will dissolve by week fifteen. Today’s foolishly running outside and shaking fists in air shouting  " Is this all you have!" will give way to kneeling anywhere and begging for deliverance.  

  Dx'd in May, tx in Sept.....so , yep, lost of reading and internet, back and forth...what to do.
Good insight in that whole paragraph! thanks for your encouragement, It ALL helps.

                                                                               LL

[Lady Lauri]

pitter...thanks for the prayer, helps and back at you. your sweet.

hack....cool! Week 6 I may be out of bed ?? :}

fullofhope (good name)....got the xanax and does help! Especially past couple days.Also got some pain med. All I have with the trial!                  be well

All else I missed, but did pretty good on my back here :}
         TY..............All feel better

[Lady Lauri]

  "With your body weight 600mg  could well be the right amount for you. You are taking a lot more Riba per kg than I was. "

CS ...........................................................

  All I've found thus far, I really tend to agree. What was the part about .......................................
" Now if you have to stop taking the Riba that’s OK too if its not for more than a week."

                                                  LL

[Lady Lauri]

What type are...hopefully WERE?....you?
I just so agree with the one size doesn't fit all also. Did you SVR on the 90mg. and how much did reducing help you on the sides? if my options are......stay this way, stop early OR reduce, handle-function better and do the whole time, I'll take the latter!

                                           thanks, LL

[CockSparrow]

The premise behind this statement was in preference to quitting altogether.
Now if you have to stop taking the Riba that’s OK too if its not for more than a week
The following is from the Pegasys Medication Guide.

Anaemia (haemoglobin ≤10g/dL) was observed in 13% and 3% of patients in clinical trials treated with PEGASYS with COPEGUS for 48 weeks and 24 weeks, respectively (see Adverse Effects, Laboratory Test Values – Haemoglobin and Haematocrit).

The risk of developing anaemia is higher in the female population. The maximum drop in haemoglobin occurred within 4 weeks of initiation of  ribavirin therapy. Complete blood counts should be obtained pretreatment, at week 2 and week 4 of therapy and periodically thereafter. If there is any deterioration of cardiovascular status, ribavirin therapy should be suspended or discontinued (see Dosage and Administration).

In comparison to 48 weeks of treatment with PEGASYS and COPEGUS 1000/1200 mg, reducing treatment exposure to 24 weeks and daily dose of COPEGUS to 800 mg resulted in a reduction in the serious adverse reactions (11% vs. 3%), premature withdrawals for safety reasons (13% vs. 5%) and the need for COPEGUS dose modification (39% vs. 19%).

COPEGUS Haematological Dosage Modification Guidelines
For patients with no cardiac disease any reduce dose to 1 morning, 2 evening
Reduce COPEGUS dose to 600 mg per day if Haemoglobin <10 g/dL
Discontinue COPEGUS if Haemoglobin: <8.5 g/dL

If the laboratory abnormality is reversed, COPEGUS may be restarted at 600 and increased to 800 mg daily at the discretion of the treating physician. However a return to original dosing is not recommended. In cases of intolerance to ribavirin, PEGASYS monotherapy may be continued.

While it would be preferable to not have to dose reduce at all, if you have no choice, you have no choice. Even stopping Riba altogether doesnt eliminate SVR. In no way am I suggesting that you contemplate this without your Doctor recommending it. More to let you know that all is not lost, especially if you are RVR.

CS

[pitter]

are you feeling any better today?
Pitter

[Lady Lauri]

"In no way am I suggesting that you contemplate this without your Doctor recommending it. More to let you know that all is not lost, especially if you are RVR."
--------------------------------------------------------------------------------------
Understood........... from the start :}

  That is what I am needing, those facts/studies that would take me hours/years to look through, find and many of you have already found them, thus saving a tired woman a lot of time and stress...thank you.

  As it said 'especially in the female population", than with having MVP and another 'leaky heart valve', I do need to pay attention to my body, signs, etc. and I have a suspicion that my 'stuff' (new medical term:} is dropping quickly causing this. After 3 days of lowering myself, I am up a bit more, don't feel AS bad and I'd read/heard a lot that lowering to 600mg was not such a drastic thing for 2b's, SVR, my body weight. We're all ready to be 'down' with this, but need to be on top of any quick, drastic changes, I feel.
I am curious tho, if one has to stop the Riba all together, monotherapy with Peg., whats the stats on that one? (if you have, just a curious question.) Pretty low, right?
  Without my 4 week labs, all premature I know, but this is something I felt needed done now!
Thanks again, will post labs soon as I have them for help reading them.
                                                                                    LL

[Lady Lauri]

  A bit , yes, not up and going (expect that) but don't feel like I'm dying here, LOL.
If you read above, I went to 600mg past few days and the day I posted, probably only got 400mg as 'lost 2 down the drain'. We'll see with 4 weeks labs, IF RVR....staying with that.

  I worry about when you decide to do tx as you sound a bit like I was, 'afraid' of med's. sides, ALL med's and like you, seemed it always took a lot less for me to feel than most. That was a big part of my decision here too. May I ask......are you small, med., plus ? I ask as whoever you start tx with (and hoping a specialist) be sure to tell them your more 'sensitive' to meds, address your concerns there and insist on proper wieght based, etc.  I think your type 1 tho, and not sure the norm for that tx. If, when you start.....it takes a lot of mental prep for that 1st dose and more. I'll be more than happy to give you my # to talk you thru, as my 1st shot-to me- was like walking down death row!
TERRIFIED (many are) and it just wasn't a big deal at all. I got barely anything off 1st few shots, and tolerable now. I truly feel...JUST my opinion.... the Riba is my cause of the 'intolerable' parts, hence adjusting may help.
  thanks for checking on me, you have a good day :}
I'm going to walk outside.....:}.....and SIT in a chair....LOL

[pitter]

Hi,
I read the other post b4 this one.
I am 5'2', 140. used to be 123!! b4 friggin menopause!!!!!,,then all of a sudden I got bigger !!! I work out tho..so I am in decnt shape...I got an eliptical machine and a abs sit up chair...when I keep at it I stay in better shape...altho I hate excercising!! I used to go to gym, but I hated it!!!
thank you for the offer of help when tx...at this point, I am going to have another blood test in a few months to see where viral load is at...it was 3 million in feb when 1st diagnosed.
I keep watching and reading here...I need to keep working right now cz we need the money...we are in the middle of building a house..my husband is a builder.  So if I took tx and couldn't work, we'd be in trouble...
how is the weather down there? I am in CT. windy and chilly today...brrrrr!

[orphanedhawk]

I am or was geno 2 but I have cirrhosis.

I've always been a lightweight, getting drunk on one glass of wine, type.
I started on pegasys. The hepologist I changed to, said he would have put me on a weight based dosage. It makes no sense to me either, that a 100 lb petite woman would take the same amount as a big guy weighing more than twice that.

Although my interferon was reduced, he upped my riba to 1000.

I was supposed to get my 3month post PCR two weeks ago. If I'm not UND, I  don't plan on doing this again. If nothing else, my husband couldn't stand it.

BTW: I know that ladybug who is geno 2 with minimal liver damage, was UND at 4weeks, did a total of 16 and is still UND after 6 months.

Unfortunatly tx is unpredictable. What works for one person, may not work for another. Try and do what you can to make yourself feel good.Get a heating pad. Take warm baths. Walk when you can. I kept a book with uplifting meditations by the bed. And do take your riba with food! Eat ice cream!
Enjoy what you can. This to shall pass;)

[Lady Lauri]

  Me too, was always in good shape,ate good, etc. and probably helped in not being worse in the Hep.
  Planning ahead for tx , or being able to in your situation, is good. I think (hope for others) much easier tx will be out in a few years. Keep in mind tho, you'll always 'need the $$' , to work  :} (most do, I'm playing more lotto right now, LOL.)

  I'd love to see CT., Maine. Been west, south, some north but not N. east :}
I am the odd ball..... I like the snow, cold, seasons...so miss FALL!
In Fla. for obligation ONLY! And been terrible here, humid until the past few days....we're in FALL, some dead leaves and only 78 degree's outside :}
  Going to the store :} My big day out!

                                                                                              LL

[alagirl]

How are you feeling today, any better?  

[ladywhy]

I hope I didn't come across as unsympathetic, if so I apologise. I do understand...'cause I am also experiencing sx from tx...
I pray you feel better soon.
Y

[susan400]

I've been sort of running this weekend and just got on here real quick.  I didn't read through all of the comments, but I had to put in my comment.  When I was in the trial for Prove 3, they didn't allow rescue drugs, but they did allow meds for nausea and allowed my Ultram for pain.  I'd check with your trial nurse for some sort of med for the nausea.  I've taken something like Compazine (or similar) on just about all of my treatments-when I needed it.  I didn't need it the whole time, but usually at the beginning.  Also, I used the Boost (over the counter-liquid drink), in the High Protein Choc. Flavor, whenever I wasn't able to eat and it seemed to stay down pretty well.  Also, soup was my friend.  Don't quit, if you can help it.  I'm feeling for you friend.....sorry that you're having such a hard time right now.  Let me know if I can help you.  I'll be gone Tues-Fri. of next week, but after that I'll be around if you need me.  

Susan

[CockSparrow]

I am too tiered to piece this together for you. The excerpts below come from ML Shifman and a study Strategies for Managing Anemia in Hepatitis C Patients Undergoing Antiviral Therapy.
You can draw your own conclusions.

When pegylated interferons were combined with ribavirin, the SVR increased to 54–56% compared with 18–39%

During combination antiviral therapy, hemoglobin generally decreases by 2.5–3.0 g/dL, within the first 4 wk of treatment

In two recently completed analyses of data from clinical trials of peginterferon alfa-2a/ribavirin, where these issues were accounted for, ribavirin dose reduction did not appear to impact either virologic response or SVR, as long as ribavirin dosing was not interrupted and the dose of peginterferon was not reduced (20, 21). However, a cumulative ribavirin dose of <60% (which generally entails missed doses) was associated with a lower rate of SVR in these studies.

It is critically important to identify patients with RVR because these patients have up to a 90% SVR rate if they remain on treatment for 48 weeks for HCV genotype 1 infections[4] (and 24 weeks for HCV genotype 2 and 3 infections.[3]

Furthermore, this very high SVR rate in patients with RVR is achieved regardless of the regimen these patients receive. This was shown in a retrospective analysis of a large, randomized, placebo controlled trial in which patients who achieved RVR had an SVR rate of approximately 90% regardless of whether they received peginterferon alfa and ribavirin, standard interferon and ribavirin, or peginterferon alfa monotherapy.[7] In addition, the likelihood of SVR patients with genotype 1 infection who achieve an RVR does not appear to be affected by shortening the duration or reducing the dose of ribavirin. In one trial, patients with genotype 1 who achieved undetectable HCV RNA were randomized to stop or continue ribavirin at treatment Week 24.

Patients with RVR had an SVR rate of approximately 90% whether they continued or stopped ribavirin.[14] A retrospective analysis in patients with genotype 1 demonstrated that reducing the dose of ribavirin in patients with RVR also did not impact the rate of SVR.[

Several small studies have suggested that patients with HCV genotype 2 or 3 who achieve an RVR can be treated for a shorter duration (12-16 vs 24 weeks) without any significant decrease in the number of patients achieving SVR.[16-18] In addition, a single retrospective analysis has evaluated the impact of reducing the duration of therapy from 48 weeks to 24 weeks in patients with genotype 1 who achieved an RVR.[19] Unfortunately, in each of these studies, reducing the duration of therapy was associated with approximately a doubling in the relapse rate. In addition, a large, randomized controlled trial in patients with genotypes 2 and 3 demonstrated that SVR was significantly reduced in patients with RVR—from 90% to 82%—when the duration of therapy was shortened from 24 to 16 weeks.[3]
Based on these observations, it is apparent that patients who achieve an RVR are highly sensitive to the duration of interferon-based therapy. Taken together, these studies also suggest that patients with genotype 2/3 with RVR should be treated for 24 weeks and those with genotype 1/4 for 48 weeks and that doing so is associated with high rates of SVR.

As a result, the management strategy for patients with RVR who develop adverse events should be to consider reduction of the doses of ribavirin and/or peginterferon alfa so that these patients have a better chance to complete the current standard-of-care duration of therapy.

CS

[Trish77]

I hope you made it through the weekend and I'm sure you did.  I also hope you get your butt into your doc soon and have a good chat with him.  They don't call this fighting the dragon for nothing, right?  You need different weapons and you're going to have to figure out what they are.  Nothing you've ever fought in your life is quite like THIS fight.  Very presumptuous of me to say .. since I don't plan on starting tx until January.  It's just...I've been reading the forums and it makes me sit back and go .. "holy sh** .. this is gonna be like nothing else I've ever encountered" and I've had to fight a number of things in my life.  I'm glad you reached OUT on the bad days.  As much as I hate to do that....I do NOT plan on going down.  And if that's what I have to do to win the fight..that's what I'm going to do.  Lots of good advice here.  Very much rooting for you.  Dig deep.  Really deep.  It's there...and you'll find what you need to do to get 'er done.  NYgirl7's SVR celebration is a big inspiration to me.. and I look forward to us having an SVR celebration for YOU.

All the best to you.

Trish

[Lady Lauri]

alagirl.....jeeezzzzz, like a ski trip downhill and hit that only tree on the slope , LOL. Still waiting on labs, tho I did find out my hgb had dropped at week 2, which I don't think is unusual. Just makes no sense to me that rather than reduce in a trial, they go for 'drop her out' if it all goes down???
  Thanks for thinking of me. I know a bunch are having a hard time right now. Hope EVERYBODY starts feeling better.

Ladywhy, not at all. I am only here @ 6 mths. Many of you have known each other awhile and even with debates and arguements, most stay 'buds'. Tho I have no idea what the h*ll is with froggydan, not knowing me at all, nor even having any conversation.....but I choose not to 'converse' with him, surely does not mean all others should!
Thanks for your prayer and back to you. When you get a minute....what sides are you having the hardest time with? Learning, comparing and trying to stay in the game.
                                                                  
                                                                                  LL

[Lady Lauri]

  Great 'boost' post,TY. Made it thru the weekend, in bed. 8-9 days now and not up one so it does get to you (as MANY know). Trial nurse called this AM, I have to go in, decide what to do and in the trial...all 'rules' change. I want to reduce, NOT drop out. 4 week labs STILL not in yet!

  When you start tx, reaching out here helps a LOT! And believe me, I am a pretty tough gal, fought a lot of battles also, went in fighting, 'ready', but all the preparing, research, reading still did not prepare me for this! I guess it's the smack in the face of 'Oh sh*t, I CAN'T work, I CAN'T get out of bed, this IS life thru tx!" ?? I had expected some good days, some up days, getting none?? I get up, soooo determined to do ANYTHING and simply....your body say's "oh no your not!" , LOL. HOPEFULLY, as some say here, it can taper off, possibly just getting hit hard at first.
I sooooooo wish you the best in tx. AND SVR! Be sure to let us know when you start (Jan.) We'll be talking :} And very thoughtful post, Thank you :}

                                                                    LL

[Lady Lauri]

  You are a wealth of info. and thank you , especially when your taking the time feeling so tired.
   What I have said all week.....reduce me and I can do the 24! Don't reduce me and they'll end up dropping me from the trial!?

That was great info., using it at my appoinment! What I needed to read. I am a cover all base's person, and am taking SOME control of my tx here.

  Come on freaking 4 week labs!!?? (still not in.)

                                            THANK YOU, LL

[Lady Lauri]

  Just getting your post, mails. Wasn't on much last 2 days.
It's not even the nausea I can't handle, it is the other sides. I'll write ya' back on the e-mail.
And so glad to see you so out and about, enjoying life more :}

                                                                                    LL

[Lady Lauri]

I can't find the *&%$ post I am looking for (duh, shocker, huh?) so I'll use my thread.

    I have seen/read your story here before, how you got hep, what you have been thru and had wanted to say I think you have an amazing attitude for such a hard hand dealt. (I had something similar happen years ago, but luckily got no disease from it....whoa.....or did I ?? Many of us never know for sure where we got it, that never crossed my mind! Doubt it tho)....anyway, as I was saying.... Even in how you somehow have pity for him, that is really impressive on WHO you are. Many of us got this from our own mistakes, you got it through a terrible act and no 'doing' of your own, yet you handle it so gracefully, with no 'anger, hatred' and that is a rare, great quality. I truly believe you'll achieve SVR and I will be praying for you to so that you can totally put that whole part of your life soooooo far behind you. You very much deserve that.
  Hoping your vertical today and not still  horizontal:}

                                                                                                 LL

[alagirl]

Oh trust me.  I was plenty pissed at first.  About the assault, then the hepc.  But.  It's funny how when you're treating the scope really narrows to what's important in life - friends, family, health, and healing.  And most of all, trying not to sweat the stuff that you either have no control over or that just doesn't matter.  I'm a pretty controlling person in general.  Honest.  I even have references.  But at some point you just have to do what you can and let God sort out the rest.

And I guess also that I don't see ANYONE EVER as deserving of getting a horrible disease like this.  I've never done IV drugs, and I've never been a drinker, but hell, I'm a long way from perfect.  I don't think there's some hierarchy of "sins" where what I have or haven't done is somehow technically better or worse than what someone else has.  And if I did have a hierarchy, being sh*tty to your neighbor would rank up there in sinland way above drug or alcohol use or abuse.  The older I get, the more I notice a lot of things I should be grateful for in my life, as opposed to worrying about the bad stuff.  You can leave an entire lifetime back there on old events and there's no sense living bad events twice.  

And yep!  Vertical today ;)  Even spent the morning at the chicken plant.

Now back to you, they want you to drop out because of your bloodwork?  I am not familiar with the different trials.  I know a lot of people here are undergoing one or another.  But they don't allow any rescue drugs like procrit on the trials?

[Lady Lauri]

Oh, God, no.....NO ONE deserves this of the big C or any awful disease, just that I know my own mistakes brought this to my life, and yours was from an already , terribly wrong assault on you.

I very much live as you said .................................
"You can leave an entire lifetime back there on old events and there's no sense living bad events twice.--------------------------------------------------

Don't carry 'baggage'. Being angry, bitter about the past hurts no one more than yourself.
Too much present and future to live. And the past was fun, happy, sad, good, bad and ALL life and learning.
"But at some point you just have to do what you can and let God sort out the rest."
Yup, agree.
  On what's happening in trial, etc......see new post :}

                                                            LL