When do doctors cut ribavirin dose?

A patient told me his doctor lowered his ribavirin dose to 4 per day but he didn't say after how many weeks he did it.

[NYgirl]

Grandma,

From my understanding (and that of both doctors advising me) reducing dosage is an absolute last step measure that we should really strive against.

The first 12 weeks of treatment are supposed to be the most important - under no circumstances would I allow the doctor to reduce (ever) but really it is important not to here.  That is the main reason that we have the rescue drugs...to prevent us from having to reduce and to assist us in keeping our numbers up.

Imagine for a second that your body is used to getting one amount of the stuff to fight the virus...and then it suddely just drops down - seemingly with less protection the virus could just grow rapidly as it doesn't have the same protection as before.

I did reduce at week 46 - but I had insisted on taking EXTRA ribavirin that was way outside my weight range for the entire first 46 weeks...and had been UND since between 12 / 24.

So basically I don't think there is ever a real time that it's OK to reduce but I would say at LEAST if it has to happen after 12 or 24?

Good question. Sorry don't have a real answer just some logic but that might not be correct anyway.

[FlGuy]

Doc who treat aggressively and give their patients the best shot of clearing the virus will reduce med doses only as a last resort.  I think you are in your second week of tx now and you should have a heart-to-heart chat with your doc.  Most often, people become tx challenged with low hemoglobin (anemia), low absolute neutrophil count (anc's), low platelets, and things like depression, anxiety nad other physical discomforts (skin issues, nausea and so on).  For most of these things there are perscription or over the counter remedies to ease the symptons ot to address the issues.  Addressing theses things, actively, will allow you to stay on full-meds.
An important talks with your doc is to dicuss when (what levels) and how (what remedies0 he will use to help you in tx.  Hopefully, and in the case of hgb, anc, platelets, you can arrive at specific levels at which he will interevent.  For platelets, there not much you can do, but to deterine what he interprets as the minimum safe level.  All of this should be part of your treatment plan and coincide with frequent and regular bloods testing and doctor and self-assessment.

[mycoldfeet]

NY Girl pretty much said it all, and I agree, many people have had to reduce riba because of blood count, but if the Doc ain't behind the eight ball he will prescibe rescue drugs when blood tests show a steady drop. Reducing Riba should always be a last resort, and for the least amount of time possible.

[Sally01]

If you have been UND since weeks 12-24 why are you still taking treatment after 46 weeks.  I have been UND only 2 mos after a year of treatment and I am looking forward to stopping this awful stuff.  Is it your feeling that I will need to remain on PEG/ riba forever?

[mycoldfeet]

Everyone strives for EVR before SVR, no matter if you are tx'ing for 24, 48, or even 72wks. Even if you cleared at 4 wks if you are 1a or 1b the tx is 48wks, 24wks is only applicable to other geno types. if you are 1a or 1b and relapse after 48wks and go for a 72wk tx you still want to clear early but you will still tx for the entire number of weeks. The earlier you clear is an indicator of chances of SVR.

[Mister beagle bailey]

This is like a catch 22....  How long to treat is the question that many can't answer.  I'm a geno 2B, infected 9 yesars, viral load at start of treatment was 318,000.  I treated 24 weeks was UND at week 12, may have been UND earlier but didn't have a PCR done till week 12. Did full dose of peg and riba and I relapsed at 2 months post tx.  So you see, this is a hard question to answer.  I wish I had continued to treat past the 24 weeks to week 48, then manybe I would still be UND today.

Be well,

Beagle

[GrandmaA]

Hi,
Thanks to everyone for all the information and sharing. I truly appreciate it. What an education you are giving me! My doctor was amazed how much I knew about this tx the one time I talked to him. The doctor is so busy he put the wrong primary care physician on my standing order and also that I need labs twice a week. I have a better one now by his N.P. I get my first labs this week.

I got the Rx for zofran. The pharmacist said it is the very best thing for nausea and it doesn't put you to sleep (you can take it with your pills too). A nurse from another forum told me about it.

Thanks again everyone. I'm still on full dose of everything.

[NYgirl]

I have thoroughly read the latest studies that were done and then I hunted out the lead investigator of them (Dr. Jacobson) and had a consult with him.

The newer data seems to show if you are not UND by at the LATEST week 12 (and preferably are at week 4 - week 4 really gives you much better odds of achieving SVR) that doing the 72 weeks changes your odds of having a relapse from 48% to about 30%.  I'll take the 30%.

As I was baseline 568,000 - week 4: 411 - week 12: 419 and then not UND until week 24...going by the latest studies although I did have an RVR (rapid viral response) I did not get UND until somewhere between 12 & 24.  I don't think 50/50 odds are so good looking at that and decided that I prefer the 1/3 instead of half and half!

If you want to read the studies google the Berg Study and the Sanches Tapias study. They will explain it all in much more detail than I can.

I hope that makes sense.

[lauraisstrongerthenHCV]

my doctor reduced my ribaviran and pegasys during my second or third week....he never offered rescue drugs.  I will be on week 12 thursday and have been taking 135 ug of peg and 800 mg of riba since dose reduction....and have UND since week 4.  I am getting another PCR on week 12 like the people on this forum suggested (thnanx btw) and I hope my dose reduction didnt cause the virus to come back!!!!  I wish I had did the rescue drugs first!!! I will let you know if I still am UND when I find out but now I am feeling doubtful

[lauraisstrongerthenHCV]

once again you drop by to give me words of encouragement......THANK YOU!!!  i am too far to quit now!!!  My GI gave in and gave me a slip to get a 12 week PCR... even though he said "I dont think it is necessary"  but I said PLEEAASSEEE for my sanity and he agreed!!!  He mentioned again what a blessing I have received to be UND at 4 weeks on a modified dose and a 1b genotype...I have to agree... Prayers do work!!!

[NYgirl]

STOP!

If you already got there than you claim that undetectible and you keep it going!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This whole entire thing is a big crapshoot really - why some make it and some dont makes NO sense.  People who appear to have SVR relapse. People who take their meds helter skelter get it.

You just got to keep a positive attitude and go along with it.  There is nothing else to do. I am SURE you will still be UND at the next PCR.

Dont sweat it!

[Kalio1]

Some people, like NYGirl and I and others here have to extend treatment longer than the norm for a variety of reasons. One reason is if you do not reach the Undetectable level within the first 12 weeks, another is if you have extensive liver damage.
Some people do stay on Interferon for extended periods of time because it can heal your liver and improve your histology. The first goal of treatment is to clear the virus but for many there are other reasons to continue with the meds if they clear the virus or can not clear the virus. Supressing the virus is one, improving liver condition is another.

[jordie47]

I also have been dosed reduced since week 4 800 Riba 180 Pegsys pre-fills. I have a UND level at week 12. I am geno. 1a. I am on a rescue drug for anemia still trying to get HGB to stay up.
My doctor is now pushing me to go back to 1000 Riba. Sx were so bad I don't know if I want to go back.