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Hep C Discussion Forum -> On Treatment -> Incorrect Pegasys dose??
Post Info TOPIC: Incorrect Pegasys dose??
Cinnamon Girl


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RE: Incorrect Pegasys dose??
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Well done, La Bajista, that`s very good.  It`s just a shame you had to make a fuss about this, it shouldn`t have been necessary...you should expect to get the correct dose right from the start, no matter what genotype you have.  Your NP and medical team haven`t exactly inspired you with confidence so far, but let`s hope things improve from now on and it all goes smoothly.

Best of luck! smile Jill xx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
LaBajista


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Well I have an update to report:  I was successful in getting my Pegasys increased to the normal recommended dose of 180mcg. 

I had an appointment with the NP today.  She kind of lectured me about how my genotype is easiest to treat and taking the half dose isn't such a big deal for me, and that pissed me off.  I had an entire monologue prepared, and I did stand up for myself a lot during my appointment, but I didn't have to get into everything.  At first I got the NP to allow me to increase my dose to 135 this week and 180 next week.  Then... There was a student shadowing the NP today and she told the student that the doctor sometimes starts someone with pre-existing conditions at a lower dose and increases it as they show they can tolerate it.  I asked her what my pre-existing condition was (I have none) and after a long pause, she said, "I see that you feel strongly about this, why don't you go ahead and start taking the full dose of 180 this week."

Well okay then!  I feel much better that I believe I am on a path now that gives me more chance of success, but I have lost a lot of faith in my treatment team.  The NP did agree to give me a printout of all my labs, which makes me feel a little more comfortable.

SO... My stress level is decreasing and I think I'm gonna be okay... :)  Thanks for all your comments and suggestions.

(BTW the pharmacy is still in the middle of some kind of formal review of all this--I tried to call them off but I guess I can't.  Oh well--that's what the dr gets, I guess)



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genotype 2, initial vl 69,000 -- Pegasys/Ribavirin started 10/5/12 UND since week 1
Cinnamon Girl


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Sounds like a sensible plan, I wouldn`t mind crocheting an owl hat myself! biggrin You should have plenty of time on Thursday to talk it all through with your NP, that`s the ideal opportunity to do it.

Let us know how it goes...the appointment, and the owl hat, of course! 

Best of luck, Jill xx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
LaBajista


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I just realized I never rescheduled my next appointment after I had to wait a week to start treatment, so I have an appointment on Thursday with the nurse practitioner who does the prescribing, I think.  She's not going to have any labs to look at yet, but at least I will have scheduled time to talk to her and get things straight.  So as much as it kills me, anxiety-wise, to have to wait two more days to work this out, I've decided not to go try to see her today.

I'm going to crochet an owl hat for myself instead. :)

 OwlHatsAllSizes1.jpg

pattern here



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genotype 2, initial vl 69,000 -- Pegasys/Ribavirin started 10/5/12 UND since week 1
Phil G


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They need to clear this up, period. Pegasys and Pegintron are only similar, but not the same. The dosing is clearly specified for each one, and are not interchangable. I was on Pegintron and don't have any experience with Pegasys, but it always made sense that the dose was weight based. The riba is! Looks like your dr's intentions was to put you on the low end of the 120 mcg pen rather than the high end of the 80 mcg pen. Good luck. Dealing with doctors, insurance, and pharmacies was my worst sx during tx.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
JoAnneh


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Call your pharmacy and keep bothering that doctor!
Does he have experience w Hep C?
Glad u r proactive and surely this will get cleared up soon.
Keep us posted
JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
LaBajista


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Thank you for your responses. I now feel vindicated in making a big deal, which I am, and will...


When nobody called me back by the end of the day yesterday, I took Michaele's advice and called the pharmacy. They were nice, told me yeah, they thought my dose was 180, and that they were gonna start this formal process of confirming the dose with my doctor, going over the original phone call when the insurance denied Pegintron and they had to switch to Pegasys--SOMEONE at my dr's office knew and told them the dose, but never told me about the. drug change.

I'm glad the pharm is doing this, I'm hoping they come up with the right dose at the end of this inquiry, but I don't think I'll feel really satisfied until I talk to my doctor or the nurse practitioner, so I'm going there today. The pharmacist thought it was a good idea.

So, it is now my mission in life to get someone to tell me the right damn thing, in person. I'll wait all day if I have to. (Hopefully I won't have to!) Or more.

Thanks all for your advice and stuff. Maybe I'll have success to report later today.
Labajista



-- Edited by LaBajista on Tuesday 9th of October 2012 02:52:13 PM

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genotype 2, initial vl 69,000 -- Pegasys/Ribavirin started 10/5/12 UND since week 1
Cinnamon Girl


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 Hi LaBajista, yes, 180mcg is the standard dose, and I think you`re right to be very concerned about this.  I think I`d be looking for another doctor if this doesn`t get sorted out very quickly, it`s so important that to have a medical team that you can trust.   I know what a hassle that would be, but we do have other members here who changed doctors early on in their tx.

Here`s a link to the Pegasys dosing information site, scroll down a bit for the Prefilled Syringe info...

http://www.pegasys.com/hcp/about-pegasys/dosing-adminstration/index.html

And here`s another link to a Hep C helpline...

http://www.hivandhepatitis.com/hcv-policy-advocacy/3446-hepatitis-c-helpline-offers-information-and-referrals

Do let us know how it goes with your doctor - I hope you get some clarification very quickly. 

Best of luck, Jill xx

 



-- Edited by Cinnamon Girl on Tuesday 9th of October 2012 12:30:31 PM

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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mallani


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Sounds like you're getting some pretty average medical care. You are correct, the dose of Pegasys is 180 micrograms/0.5ml weekly , irrespective of body weight, sex or genotype.  Dose reduction to 135 or 90 is only for serious side effects.



-- Edited by mallani on Tuesday 9th of October 2012 07:50:46 AM

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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
kiwi


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sounds like you are right to be concerned.... my chemist accidentally gave me a box of the 135, i took it home. but it wasnt till i opened the big box up i realized it was a different colour than the last one. hmmm, checked it out, yup it was 135 instead of the 180. box was different, different colour stripe on it too.... i rang them whoooops, sorry bout that maam. can you bring it back. well yes but not till tomorrow.

thats a $2200 mistake on THEIR PART. anyway i took it back, got the other one, no problem.

but it pays to be vigilant, this is our healthcare mate.

good on ya. follow it up for sure....

 



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
Michaele


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Hi, sorry your so stressed. Did you call the pharmacy that the drug came from, and ask to speak someone. Also dont most of the drug makers have hotline numbers with the product. Maybe if you talked to a live person it would relieve some of your stress until you can speak to your dr. I havent started Tx, but I know they have 24/7 hot lines. cinnamongirl would know. Michaele



-- Edited by Michaele on Monday 8th of October 2012 10:30:08 PM

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MDodrow
LaBajista


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Hi all,

 

I've been doing a lot of research, but a simple read-through of the information that came with the Pegasys and with the Ribavirin was enough proof for me that the doctor may have made a mistake with my Pegasys dose.  As I posted before, I was originally prescribed Pegintron, but the pharmacy mailed me Pegasys instead.

 

According to all the drug information online per the manufacturer, the recommended dose of Pegintron is 1.5 mcg per kg.  I weigh about 110lbs, so about 50kg.  That would make my dose about 75mcg, but the doctor had prescribed me 96mcg of Pegintron.  So definitely not a low dose.  Now when I realized I had the wrong drug, I left a message for the doc and told him the only delineations on the syringe were for 90mcg, 135, and 180.  He had someone call back and told me to go with 90.

 

HOWEVER, all the information about Pegasys and even about Ribavirin in combination with Pegasys says the recommended dose is 180mcg. Period.  The only information about 135mcg or 90mcg are for dose reductions due to dangerous side effects.  I just began treatment on Friday, so clearly I don't have any problems yet, and I would imagine that if the doctor didn't give me a lower than normal dose of Pegintron, he would have no reason to give me an extremely low dose of Pegasys.  My dose of Ribavirin is exactly as recommended, btw.

 

I'm really nervous about this, I certainly don't want to be doing all this for nothing.  All the SVR rates, data from clinical trials, etc, are all based on 180mcg of Pegasys.  I called my doctor first thing this morning, and the receptionist would only pass on "I'm concerned about my dose" to some doctor who handles treatment stuff, not my actual doctor.  But I haven't heard back yet, and I'm frustrated and worried that the doc will think I'm trying to say I know better than my doctor or something, and not listen to me, even though I think I can explain it clearly (right?).  If she doesn't get back to me by the quickly approaching end of the day, I'm thinking of showing up at the office tomorrow and asking if I can just wait there, all day if necessary, until she has a few minutes to go over with this me and explain why I'm on HALF the recommended dose.  Is this a bad idea?  I don't want to be a pain in the ass.

 

 ---edit: I just checked the label on the box of Pegasys syringes, and it does say inject 180mcg weekly.  So I guess I have some more proof to back me up. --

 

Any thoughts, about any of this?

Thanks a lot,

LaBajista



-- Edited by LaBajista on Monday 8th of October 2012 11:16:38 PM

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genotype 2, initial vl 69,000 -- Pegasys/Ribavirin started 10/5/12 UND since week 1
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