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1582614 tn?1310324908

Was told to lower pegasys dose wk 12 WHY?

Hello all I had lab work done last week. Did shot and now doctor's office called and told me the doctor
read my lab work from last week and to lower peqasys shot from 180 mcg to 135 mcg. So I asked why and she told
me doc said too much to go into depth over phone. Would need to see me. What the hell is going on? WBC has been down for weeks platlet among a few other things. RBC has been fine. Should I drive 5 mins to get lab work from
hospital? Doc's office is there too. Why would I have to lower dose now after b4 12th shot? Riba is 1000 was @ 1200 but lowered because of shortness of breath. Help! Love you all. Hope everyone is doing well.
Denise
And why couldn't he just say he could call me back and explain?
30 Responses
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264121 tn?1313029456
lol me and my insurance company.  I'm on COBRA right now and I'm sure they're hoping I don't hook up with anyone who carries their insurance in the next 18 months... ;)
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Avatar universal
I love your heresy post, It really made me laugh, and honestly I could personally relate. You had a lot of docs on the payroll :)
-Dave
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1652596 tn?1342011626
hang in there.  my prayers are with you.  best of luck.  belle
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264121 tn?1313029456
Actually, your platelet count looks a lot more encouraging now.  You were saying that it was sitting at 25 before, right?  So, why can't he give you neupogen rather than drop your peg?  Seriously, a referral to the hematologist is in order and if he won't give it to you then get it from your primary care doc.

Also, it's conceivable that the blood from your ear is due to an infection because your neuts are down.  Your treating doctor doesn't necessarily need to know about this.  Do you have those little emergi care clinics in your town?  Or again, a primary care physician?  Or just a regular emergency room?  I'm not a doctor, obviously, but I just worry that you might need some antibiotics.  And if you go and get them from your treating doctor, that may be all the ammo he needs to cut your peg down for sure.  

I'm probably about to commit a terrible heresy for which I will shortly be cruicified.  But.  When I was treating it was my considered opinion that not EVERY medical decision having to do with my personal health needed to be made by my treating physician.  Because we had two different agendas.  Mine was getting myself through treatment.  His was getting me through tx while covering his patooty.  

So right out of the gate I got myself a hematologist (which solved the problem of - "Hey, we're going to reduce this or that drug," or "We're going to drop you from tx altogether because you're too 'medically fragile.'"  And I got a pain management specialist, which solved the problem of, "Hey, we're going to let you writhe around in pain 24/7."  And I got two consulting hepatologists, which solved the problem of, "Hey, we've never seen an acute patient before and we have no idea how long to treat you, so we're just going to sit here and watch your bone marrow shut down."

It helped a lot because it allowed the tx'ing doctor to feel that he could freely give me the hcv meds without being responsible for my blood count, and the hematologist to feel like hey, he was just trying to keep my blood count up as best he could and support me in a bad situation.  The treating doc would have pulled me off tx if I hadn't gone that route.  I'm not saying that yours will, I'm just saying that it is a way around the reductions and such where it is easier to be supported with the appropriate medications and care.
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Avatar universal
I have to double ditto the YIKES!  I weighed in at 120 and 180 was my dose...it's the SOC dose and it's not just for the heafty and burly.  These HCV virons need every drop of Pegasys clobbering their funky heads!
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1669790 tn?1333662595
Ditto on the Yikes.  
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Avatar universal
You don't earn the nic name Scarey B for nothing........ YIKES!!!
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Avatar universal
Oh Dear...
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Avatar universal
I guess if one thinks Incivek is only dosed 2 x daily then looking at a person's profile picture should be telling enough as to whether the patient is receiving enough Pegasys despite what the manufacturer recommends.  Lower the Pegasys dosage because of body weight, now that's sage advice.....goodness gracious.  
Helpful - 0
Avatar universal
Did you have a week 4 PCR to determine your viral load? Do you know which test you are using to determine your viral load and how sensitive the test is? How long is your doctor planning on treating you?
-Dave
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Avatar universal
"it's not just about low or crazy low, it's about how fast you've been dropping."
She isn't dropping very quickly, this is a week 12 CBC. She is not in the danger zone for HGB, ANC or Platelets. I am surprised that you would suggest that she is getting enough interferon based on her picture. Have you determined that the manufacturer of pegasys is incorrect about their dosing, you mentioned that 180 mcgs in only for bigger people?
-Dave
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1582614 tn?1310324908
Just some more info... I was UND @ 7 wks. Got an intestinal infection a few wks ago.My doc keeps saying I've got this beat. He said I am his only patient w/geno 3 and his other 9 pts he's treating would love to be in my shoes. Doc's office has been very helpful in past when doc had info for me and if I had ??'s they would get me answers. This just totally caught me off guard. So I am calling office in the am and I will get some answers. I don't want to lower dose and risk the virus coming back! I will NEVER take this poison again. I am so emotionally and physically drained! Thank you all for your input and support!! I hope we all beat this and can be healthy again! Love to all! p.s. I'll post tomorrow what happens.
Denise
Helpful - 0
233616 tn?1312787196
opps forgot to say your early lab curve is immaterial, its the curve past the first few weeks that becomes the biggest concern....the first couple weeks you will pull from stored in the spleen.   The cells take time to die off...weeks for some of them, but if you have an early abrupt drop, or a severe drop a few weeks in, they will want to head off at the pass what could happen.  
they also have to cover their arshes, and get paid...I'd just go in, let them get their fee and tell you why...it'll give you a chance to confront about the blood builders...better to do this eyeball to eyebal. You have to get a doctor to want to go to bat for you...and part of that means learning to listen and developing a rapport with them
Helpful - 0
233616 tn?1312787196
it's not just about low or crazy low, it's about how fast you've been dropping.

also, where's you HB and hematocrit?

how they fall from lab to lab determines when enough is enough.

the good news is your pic indicates and average weight, you would have been dosed lower by may docs to start with, small women have less marrow and have the most issues as a result, but you should be fine at 135....I'm glad they gave you a hard punch to start...but dialing it back a little may be wisdom for small people. 180 is for big burly guys and heafty gals....if you are concerned I'd look at all the blood work...if you are UND, a dial back should be fine...if not, both Epo and neupo need to be looked at.

A liver doc doesn't get as alarmed by drops as a GI guy does, they see it more often, but it still is important to do the math.  example..lets say you lost half your platlets in a few weeks, if the curve continued and your marrow didn't kick into hyper at that rate theyd be non existant in another month...so all kinds of things play into what they so.

it's also important what kind of insurance you have. If you are working for a company or agency that is self insured, or by your own insurance you are proteted by Erisa laws...and you can't be denied what the doc recommends...but if not, some of the insurances really fight the docs....as each blood builder costs 5 to 7 K per month.   thats thousands of dollars.   My docs postponed even trying to get me blood builders because they are so used to denials...at the time I didn't know about the Erisa rules.
hope that helps

mb
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Avatar universal
I don't think reducing your dose is necessary at this point. I wouldn't do it. If this doctor don't know the latest protocols then find one that does!

Take care and best of luck
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244899 tn?1313624639
Please don't lower your dose for low WBC, my first time around in 2007 the gastro I was seeing lowered my dose for the same reason, the virus came back within a couple of weeks. I then learn on this forum that I should have been seeing a hepatoligist not a gastro that was the best decision I ever made. Nuepogen is the drug you need and it will help you feel better within a week.
Good luck keep up the dose.
Joe
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1582614 tn?1310324908
Thanks all! Been having drain/brain fog very bad  past few weeks! Husband found me throwing
spoons away, I found pills in bed, cooking accident, drove off road on my way to my sister's in NJ few weeks ago and not 5 mins into an 1 hr 45 min ride and hit gaurd rail. Scraped from one end of the car all the way the other! I'm so stressed! Guess I'll wait till weds when I call to know why he lowered my dose! Need peace right now.... Looking forward for more input!
Denise p.s. I never made it to my sister's - went home to bed for 2 days :/
Helpful - 0
Avatar universal
Oh my, he's already lowered your riba, now wants to lower your peqasys. I would ask him why? Your on treatment doe's he not expect to see some decease in you CBC's?

I know what i would do, good luck going forward......... Wishing you the best.
Helpful - 0
1491755 tn?1333201362
1000 mg's is still a lot of Riba.  Hang in there I know it's tough !
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Avatar universal
Platelets are low but not dangerous.  Your ANC is 700.  You don't need a peg dose reduction yet.  Doctors generally do not become concerned until the ANC hits 500 or below.  Your doctor may be anticipating the ANC will drop lower but ANC numbers can increase just as they decrease.  

Advise you speak with your doctor about Neupogen.  If he's wanting to be proactive that would be the best course of action to take.  Neupogen is very fast acting but as it stands right now even if they prescribed Neupogen and you had to wait for it to arrive a peg dose reduction isn't necessary at this point.
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Avatar universal
Have you had a pcr yet?
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Avatar universal
It looks like they reduced you for absolute neutrophils, They are low, but not crazy low. If they get lower you can use neupogen. Your platelets are fine.
-Dave
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1582614 tn?1310324908
ok just got back.....
WBC 2.1  L,       RBC 3.87 L,     Platelet count 109 L,    
Neutrophil % 33.7 L,     Mono % 17.7 H,    Neutrophil # 0.7 L,
Lymphcyte # 1.0 L,    Neutrophil%M 34.0 L,  Mono%M 16.07 H.
Plt Estimate DECREASED.....
Thank you for any input. So tired! Dizzy. My right side hurts. After my shower
last night I was drying my ears and my left ear had a little blood Called pegassist nurse
and she told me cause my skin is dry and tell doc which I forgot to tell them.
Really have drain fog bad! Awaiting your helpful and comforting reply. Lord knows I don't
get any words of comfort etc... @ home! Love n health to each and everyone of my friends!
Helpful - 0
Avatar universal
" So I asked why and she told
me doc said too much to go into depth over phone."

Thats just B.S. Some of these nurses and doctors think sometimes we are not smart enough to get out of the rain........ Like said if it is because of your ANC then he needs to get you neupogen. Its fast working, as for platelets unless they were really low the last blood draw i would be surprised at week 12 they have fallen to dose reduction levels..... Hang in there
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