Yeah. I'd be showing up in person. Let them see you're being proactive in ur health care.. Let us know how it goes. My office already knows I'll be fighting to stay on full dose. Haha. "Hit me with ur best shot!" Karen xo
Hi denise...it would be hard to know why they would dose reduce peg ..without the lab reports to go on....you say your platts are down..and it would be my guess this is why ..but obvoiusly just a guess.
hopefully you can find out what is going on ..and if you can get a copy of your labs and need a hand to interpret ..let us know.
Best to you
Will
Are you seeing a hepatologist? Did you discuss using rescue drugs like neupogen or procrit if necessary while on tx? What week are you in? When was your last PCR and what were the results?
If the reduction is for medical reasons it's usually because of low platelets or ANC. If the platelets are so low that it's dangerous there is no choice but an experienced doctor would likely wait until your platelets were 20,000-25,000 to reduce but many factors could influence that decision besides just the number. If it's because of low ANC (300-500) neupogen will increase your ANC so you don't have to dose reduce.
Of course I really don't know your personal history or what you discussed with the doc prior to tx, but for me it would be unacceptable for a nurse to call with no explanation of why they wanted me to reduce.
-Dave
If your doctor is able to set aside some time between schedule appointments, it would give you great relief to understand his decison to lower the dose. If he's not available, maybe the head nurse could pass along the information to help you understand. I'd be concerned as well and would be pushing for a discussion and explanation.
Haven't heard from you, so hope trt is going ok so far.
my guess is your WBC and/or platelets dropped even more. Don't think lowering the riba will hurt much but reducing the peg is cause for concern. Like the other poster said ask about rescue drugs so you can stay on full dose.
Probably the most important question to how this reductions will affect you is what have your PCR's looked like? Were you UND at 4 weeks?
Most likely the reduce order was due to absolute neutrophils (one of the 5 components of white blood cells - WBC) or platelets. Would be helpful if you had the lab report with the actual values.
" 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
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!
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
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.
1000 mg's is still a lot of Riba. Hang in there I know it's tough !
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.
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 :/
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
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
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
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
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
"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
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
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.
You don't earn the nic name Scarey B for nothing........ YIKES!!!