Thanks all for your help above. I didn't reduce, no rescue drugs, and have blasted my unwelcome invaders with Shot # 2. Ha!!
Early tx panicing alleviated by all of you who come to the rescue!! thanks again.
FWIW - my neuts (ANC) went to 1 very early and have stayed around there. At times they have been as low as .8 and I have been told that is no problem for a person with an otherwise competent immune system. Many doctors do not worry until there are below .5 (I have heard some have gone lower without rescue drugs). I think it is a good idea to stay on top of your lab results and communicate concerns if you see a problem.
Good luck,
Brent
Hi, haven't 'met' you yet :)
I'm 5 mths post tx, was a 2b, did 23 weeks tx. UND 12 wks, post. I'm posting to you because I had to reduce thru out tx BUT.....not until we knew I was UND week 4, with a good VL log drop week 2. Please try for the 2 and definitely a 4 wk. VL. That way if it's RVR/ UND the decision to reduce if needed will be 'safer'. As a non responder once already, reducing could well hurt your chances here. (and I'm all about Geno 2, 3's reducing rather than stopping tx). If your Dr. doesn't feel the need to reduce you already, he's probably figuring things will drop and even out, as with many of us. So if he doesn't suggest it, feel the need for your safety, try to push on with the dose's. I didn't see your weight up there, but if your small, yes, I feel 180mg kicks your arse, but I wouldn't have reduced before UND in my case. Also, are you doing 48 wks, tx now as a non responder?
Good luck, hang in there, LL
Willows/All on tx......I hope you don't mean you won't get a VL until week 24 ??? PLEASE insist on a 4 wk. VL if so!
Good luck to you also, LL
oops here are my prior to tx numbers aswell jan 10 20008
HB 154
WBC 4.3
platelets 193
Neutrophils2.2
here are my exact nr 6 days in treatment i started jan 10 20008 this is from jan 16 2008
Hb 150
LPK ( thats WBC) 2.8
TPK(platelets 127
Netrophils 0.6
This is from maj 15 2008 i have done later blooddrawn but hasn`got the copies yet
hb 123
LBK(WBC) 1.5
Neutrophils 0.5
Platelets 142
I only take blooddraws every six week now but when neutroph went down to 0.5 they did draw the week after aswell.
And yes i also think its very importent to get a 4week vl (PCR) test.
ca
ps the protocol for geno 1 is vl 12weeks but the new for geno 2, 3 is 4week 12w and 24w and 24w post here in Sweden anyway but i think its the new worldwide with those treaters that is uptodate
Boy, I REALLY want to give a ditto with what jim is saying...to wait for 6 months to get a viral load is very confusing to me. The current protocol here in the US is to get a viral load at 12 weeks and use those numbers to determine how to proceed. Interferon is a nasty drug and every effort should be made to reduce exposure to it. including an evaluation at 12 weeks as to how you are responding....plus, seems like the boost you would get from knowing the virus is "losing the battle" would be a positive addition to your treatment.
Lots of folks here have gone to an outside doctor for viral load PCR's. I have no idea how much the test costs...if it were me...I think I would save my Starbucks money for the next three months and pay for it myself if I had too. No one here is trying to emphasize the negative....it just makes sense that if you do not respond like you should...it would be such a smart thing to do to stop at 12 weeks. Better for your eventual SVR too...reducing exposure to interferon helps you stay away from treatment resistant mutations. The most current drugs being tested are focusing on 24 weeks of treatment and I find that so exciting and very attractive on so many levels.
Hang in there!! Some days..that is all we can do and "staying the course" should be applauded more and recognized as a heck of an accomplishment. Hope your course is just as long as you need to SVR. Take care.
Willow
Why don't you run your numbers by Dr Dieterich in our "expert forum" to get some perspective as he treats hundreds of patients here in the U.S.
http://www.medhelp.org/forums/show/272
As to viral load testing -- and esp given that you were a prior non-responder -- I would make best efforts to get a sensitive four-week viral load test even if out of pocket. Depending on the amount of liver damage you have, etc, it could guide you early-on, whether or not you had a realistic chance of SVR (cure) and therefore whether or not you should continue treatment. I understand your predicatment, but waiting until six months (I assume this is end of treatment) for your first viral load test can potentially subject yourself to five months of unecessary tx drugs and all the side effects and potential damage they can cause.
-- Jim
Thank you so much for your super-informative reply - I yelled for my partner to come and read your comments and you have relieved us both!!!! the results just seemed so confusing after only 6 days post first shot - when I did mono it took 4 months before I had drops like that...
I didn't know how the pegasys was prescribed - that's a relief also. I am now so much more confident to take my next shot! I know I won't have the chance of an extended tx so this is it for me in NZ, I really want to put everything I can into it.
Thank you sincerely again for sharing your experience with me. I will sleep better tonight and don't feel as out on a limb :-) :-) :-).
After 6 days my neutrophils went down to 0.6 and they usually go down a bit further for another week. They forced me to go down to 135mcg pegasys the second shot, it could have been that reduction that keept me from getting UND week 4.
My neutrophiles have been down to 0.5 in one occasion after that, but i haven´t done any more dose reduction then shot nr2, i just refuse and my doc said i dont have to unless they go down to 0,35. ( they been around 0,7 since then) MY wbc are quite low 1,5 I´m in week 27 of 48.
Pegasys is not weightbased as pegintron its based on the amounth of blood you have in your body and its the same whether your weigt is 500lbs or 100lbs.
The rule is try to avoid any dosereduction of any kind if possible specially in beginning of treatment and before UND.
Your platelets is no course of alarm either.
Take care, God bless and ty for your adwice regarding forgivness in another thread much appreciated.
ca
Thankyou muchly for your comments :-). I will certainly discuss same with my Nurse 2moro (I don't see the hepatologist until week 4).
I have great faith in her reading my results correctly; however, there has been huge budgeting in New Zealand; I had to push to even get these blood tests done in the first week and will not be getting a Viral Load done until 6 months is completed (I will be trying to do this privately). This is why I keep track of my bloods, so that I can insist on early bloods again, if necessary. Being a non-responder 3A in NZ, I'm not top priority and am getting protocal treatment.
I just wondered if anyone else had experienced similar, and wondered whether these results may be liver or weight related (if it's the latter I hope I get to reduce slightly). The sides have been minor so far but I'd rather reduce that be taken off treatment after only a couple of weeks if my platelets and neutrophils keep rocketing down with the same momentum!!
Thanks again for your input. I didn't want to sound like a 'moaner' as I know what others are going through and have been so motivated by you all on this site.
Regards, Kristina
Hopefully your medical team informed you that certain blood values will become abnormal when treating with Pegasys and ribavirin, not to mention that you should expect a number of side effects, although specific side effects and intensity vary from person to person.
In general, reducing your Pegasys dose reduces your chance of SVR (cure), so it's a bad idea unless your numbers really warrant it. Are you seeing a liver specialist (hepatologist)? If so, they should have explained all this to you before sending you the lab reports.
That said, weekly CBC's are a good idea until things start to stabalize. You should also ask for a sensitive viral load test (PCR) at week 4 which means drawing blood the day before your fifth injection. A week 2 viral load test is also not a bad idea where blood is drawn the day before your third injection. You didn't mention it, but I assume they also did a hemoglobin test? If not, they should.
-- Jim
I suggest you let your doctor do the worrying for you:) For me I found it best to properly communicate to my PAC or MD the exact nature of my discomfort. If you get nausea, tell them! They got pills for that! If you have insomnia, tell them! I found it best to let my health care professionals worry about what my blood is doing.