I'm just adding another voice to the chorus here. I've completed 48 weeks of triple tx, but while I was treating my ANC was as low as .50 on a couple of the tests, and my hepatologist never considered stopping treatment or lowering doses. He did plan to give me rescue meds if it went even lower, but it never did. My WBC was about in the 1.4 - 1.6 range for most of my tx but he really didn't worry about WBC, the ANC was all that seemed to matter. Looking for a real hepatologist would be a good idea. Tx is hard enough without having to work at educating your doctor at the same time. Good luck!
Flcy is right on.
Your doctor may be nice but doesn't know diddley squat about treating hep C and you need someone who does, someone qualified to help you out of a jam.
You shouldn't have to come here in dire need and then relay the information to your doctor.
Look for an hepatologist, a liver specialist.
Try checking out the link I provided above.
Good luck.
For now I wouldn't worry about when to do the labs to test your ANC or when to do the neupogen shot to maximize its effects. InsteadI, I'd focus on finding a new doctor well versed in trt of HCV who knows how to respond to problems and keep you in trt and moving forward. The low ANC is a very common problem while on trt. It sounds like you are educating you ID specialist who is not familiar with managing the side effects of trt. To say he would stop trt if your ANC goes below 0.7 is a huge red flag. If you live in an area where you can choose a good hepatologist (or GI), go in that direction. You want proper guidance from them, and you shouldn't have to come back to them with publications to convince them otherwise. Don't feel bad for jumping ship - you have to look out for yourself. And I would not do any dose reductions! This should be left up to your treating doctor - one who is closely monitoring your cbc's and guiding you through trt. Best of luck
BTW: Nutrition doesn't' do a damn thing for low wbc caused by interferon tx.
Although you could be taking a good multivitamin without iron,it can't hurt.
Good night~
No.
I wouldn't consider doing either until your anc ( absolute nuetrophil count ) dropped to .5 or below.
That is the threshold most of our doctors use.
Having low anc might make you feel tired but it shouldn't harm you. I had labs weekly and the times my anc was above .5, I was happy because it meant no neupogen.
My advise would be to just stay the course.
Do start taking vitamin D, if you aren't already, drink lots of water and do whatever exercise you can.
Why do you have to wait until Jan 4 ???
I'd call your doctor tomorrow and tell him you want a lab 5-6 days after your next shot. Tell him you want weekly labs to keep an eye on your anc.
Get a lab 6 days after your next interferon shot (if interferon shot is Friday , then lab on Thursday or even Wednesday) and go from there.
It's unclear when you've been doing labs which can make a big difference.
I had weekly labs until my levels stabilized. As long as I had low anc and was on neupogen, my hepatolgoist had me doing labs weekly. That's the only way to know what's going on.
( Once my levels stabilized, we jumped to monthly labs but not until then, and I could always do them sooner if I wanted)
Since its been established my doctor doesn't know how to treat Hep C, should I lower my Pegasys dose on my own to try and have my ANC rebound before my next labs on Jan 4th? If so, what should I drop too, 135? I'm on the 180 now.
Stopping treatment is something most of our doctors will avoid if at all possible.
The usual course of action for low anc is either using neupogen or lowering the interferon dosage.
If you are not already taking calcium and vitamin D, you probably should be. Tx is hard on our bones, and neupogen is even more so. Plus there are studies showing vit D helps with tx.
I'm small and the full dose of neupogen was too strong for me. My hepatologist agreed to allow me to take a half dose, which worked as well for me with less side effects.
BTW: I did land up lowering my interferon dosage at week 12 and stopped taking neupogen altogether.( I was using it from week 2 to week 12)
"Sorry, that wasn't the most compassionate statement, just blunt. "
Blunt is fine...You know, I'm not opposed to getting a new Dr, Ive been researching all day. Basically, if my doctor wasn't receptive to me using Neupogen instead of stopping TX, I was going to walk. He called after reviewing my fax requesting this and said that using Neupogen is an option....I still might walk.
Again, blunt is fine...the compassion came from you reading my question and taking the time to respond...thanks for that.
"Doctors vary on how low ANC can get. Plus your own health and medical circumstances may be a factor. My doctor wanted me to start Neupogen when my ANC was .50. I asked if I could wait until my ANC reached .40. This is mainly due to the side effects I read about Neupogen."
My Doctor claims that if my ANC reaches .7 or my WBC reaches 1.7, he stop TX. Since posting this yesterday and recieving great responses, I faxed him 2 studies along with the request to use Neupogen. He called me and after talking for a minute, said Neupogen will be an option if my lab values continue to lower. He did give me some resistance which makes me wonder if I should trust him but the end result was he was receptive to the suggestion based on the information I presented to him.
I am to have labs on Jan 4th to check the levels again. I thought he would recommend a dose reduction or something....
I appreciate all the links you sent, I am buying the book for myself as a Christmas present.
Sorry, that wasn't the most compassionate statement, just blunt.
I see you're in So.Cal. You could take a look at this link for a treatment doc recommended by our members.
BTW: I changed docs the first time I did tx.
http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783
In honesty I learned about the timing of labs and when to administer Neupogen from the members here on the forum. I read studies and Neupogen-related posts on my own but without their input I would have ended up on higher & more frequent doses. In my case I administered Procrit on Thursday, Peg on Friday, Neupogen on Sunday and had my CBC on Tuesday.
Doctors vary on how low ANC can get. Plus your own health and medical circumstances may be a factor. My doctor wanted me to start Neupogen when my ANC was .50. I asked if I could wait until my ANC reached .40. This is mainly due to the side effects I read about Neupogen.
Another thing I learned on here is that low neutrophils do not particularly mean high bacterial infection with hep C patients. Here is a link from the Annals of Hepatology (don't use this since it is 6 years old and the ending sentence not exactly persuasive)
http://www.annalsofhepatology.com/PDF/vol5s1/Hp06S1-19.pdf
Dr. Melissa Palmer is widely respected in the HCV Community. Here is an excerpt from her book:
http://tinyurl.com/bnl3rug
Adherence to treatment
http://www.ncbi.nlm.nih.gov/pubmed/17660602
If it was me, I would start lining up a new doctor, preferably a hepatologist, now. I would not wait until my neutrophils to drop and the doctor to cut off treatment. I would want to have an appointment lined up with the new doctor so no treatment days would be missed. Plus, there are other problems you could have in the future and it would be better to have a competent doctor treating you if that happens.
I actually did that when I was treating. My team said they were going to dose reduce to half of my dose if my anemia got worse. Contrary to what they told me when I started treatment, they said they did not ever give Procrit. I went home that day and made an appointment with a new doctor, a Hepatologist, 70 miles away. I should have done that much, much earlier in treatment. Treatment would have been much easier if I had had a competent team in the first place.
"Whoever is treating you, obviously doesn't know what they're doing".
Yeah, I'm getting that now...
I was told to do my neupogen shot a day before my interferon.
I'd did interferon on Thursday evenings.If I need Nuepogen, I did it Wed evening, and did labs either Tuesday or Wednesday mornings.
My nurse said ideally you do labs 6 days after your interferon shot. For the ease of the nurse getting results to me back in time for me to know whether I needed to do the neupogen or not, I often did them 5 days after the interferon shot.
You never do your labs the day after. Whoever is treating you, obviously doesn't know what they're doing.
"The key is to have labs at the right time. Neupogen immediately kicks in and boosts your ANC immediately after your shot. Interferon lowers ANC so in my case I had to administer the Neupogen two days later. It was the best way to gauge the actual boost in my ANC. In other words: the timing can be tricky."
On the other end of that, is it better to have labs 6 days after the Interferon shot. Meaning, does interferon immediately affect the ANC and would be in my best interest to say, have labs done on the day before my injection...not the day after?
I appreciate your loyalty to your doctor even though he does not know how to treat Hepatitis C. Do not let this impair your judgement or jeopardize your chance to clear the virus. Yanking you off treatment without being intellectually curious about how to manage your side effects is rather alarming since what is happening to you right now is not that uncommon.
I hope you two can learn to manage your side effects together.
Your drop in ANC is not all that uncommon and your doctor may concerned about your ability to fight infection since Interferon can lower this. It is not unusual for ANC (Absolute Neutrophil Count) to drop and so far yours is not really that low. The others are right in that there is off label use of a med called Neupogen. I only ended up needing three shots in a 48 period and my ANC rebounded enough to make it through treatment.
The key is to have labs at the right time. Neupogen immediately kicks in and boosts your ANC immediately after your shot. Interferon lowers ANC so in my case I had to administer the Neupogen two days later. It was the best way to gauge the actual boost in my ANC. In other words: the timing can be tricky.
I appreciate your information and input. You have given me some valuable information to consider, thanks again.
At around week 8 of 48 week trt my absolute neutrophil count (ANC) went down to 0.35. I was referred to a hematologist and began neupogen 2x per week which raised the ANC and kept it in the 0.7-1.0 range for the remainder of trt. It is very concerning that you are being told there are no options. Most people going through trt are guided by a gastroenterologist, or ideally, a hepatologist. Should you switch doctors?? I suppose that could depend on the response to your questions and concerns. You have to do what's best for you since you don't want to have to repeat this trt.
You have the option of neupogen or a dose reduction of interferon (which would make me nervous seeing you're on only Inf/Riba). Did your doctor discuss this with you? Also, since your ANC is currently 0.8, and most experienced doctors are ok with it going down to 0.5 before rescue drugs or dose reductions, your doc may be premature in threatening to stop trt. Considering these facts, I'd be doing some looking at qualified hepatologists just in case your discussion with your doctor doesn't put you at ease. Good luck moving forward.
No problem, good luck with treatment
I appreciate the great info. I'm printing it out and taking it to his office tomorrow as well as faxing it to him tonight. Thank you!
Blood-boosting Adjuvant Therapies Can Improve Response to Interferon-based Treatment for Hepatitis C
SUMMARY: Use of adjuvant medications such as hormones that stimulate red and white blood cell production allowed chronic hepatitis C patients receiving pegylated interferon plus ribavirin to stay on treatment longer and increased their likelihood of achieving sustained virological response, according to a study published in the April 1, 2010 Journal of Viral Hepatitis
By Liz Highleyman
Standard therapy for chronic hepatitis C virus (HCV) infection, consisting of pegylated interferon alfa-2a (Pegasys) or pegylated interferon alfa-2b (PegIntron) in combination with ribavirin for 24 or 48 weeks (depending on HCV genotype) leads to an overall sustained virological response (SVR) rate of approximately 50%.
Part of the reason for this suboptimal efficacy is that the treatment can cause difficult side effects that cause many people to reduce their drug doses or stop treatment prematurely. But several supportive, or adjuvant, therapies can help patients stay on treatment. These include:
Antidepressants to manage the common side effect of depression (which may be started in advance for prevention);
Erythropoietin (Procrit, Epogen) to increase production of red blood cells and manage anemia (a side effect of ribavirin);
Granulocyte colony-stimulating factor (Neupogen, Neulasta) to increase production of neutrophils, a type of white blood cell that fights infection.
W.J. Cash and colleagues from Royal Victoria Hospital in Belfast designed a study to assess the clinical impact and effect on sustained response of blood-boosting adjuvant therapies used during treatment with pegylated interferon plus ribavirin.
The analysis included 132 chronic hepatitis C patients (73% men). All but 11 participants were treatment-naive, of whom about 40% had hard-to-treat HCV genotypes 1, 4, or 6. The endpoint of interest was SVR, or continued undetectable HCV viral load 24 weeks after completion of treatment.
Results
57 patients (43.8%) used adjuvant therapies.
The overall sustained response rate was 66.7%, but varied according to HCV genotype:
Genotypes 1, 4, or 6: SVR 50.0%;
Genotypes 2 or 3: SVR 78.2%.
Among all treatment-naive participants, the SVR rate was 68.6%, again varying by genotype:
Genotype 1 (n = 51): 49.0%;
Genotypes 2 or 3 (n = 70): 82.9%.
Based on these findings, the researchers concluded, "With the use of supportive adjuvant therapy, we achieved an overall SVR of 66.7% and in treatment-naive patients 68.6%."
"In genotype 1 patients, SVR rates of up to 46% have been reported in previous studies without the use of erythropoietin and granulocyte colony-stimulating factor," they continued. "We have demonstrated the SVR for genotype 1 can be improved to 50% overall."
Investigator affiliations: Liver Unit, Royal Victoria Hospital, Belfast, UK.
6/25/10
Reference
WJ Cash, K Patterson, ME Callender, and NI McDougall. Adjuvant therapy used in conjunction with combination therapy for chronic hepatitis C improves sustained virus response rates in genotype 1 patients. Journal of Viral Hepatitis 17(4): 269-273 (Abstract). April 1, 2010.
http://www.hivandhepatitis.com/hep_c/news/2010/0625_2010_b.html
IFN/RBV treatment induced neutropenia and its correction with neupogen in patients with hepatitis C.
Sharvadze L, Gochitashvili N, Tophuria A, Bolokadze N, Tsertsvadze T.
Source
Iv. Djavakchishvili Tbilisi State University, Department of Infectious Diseases of Medical Faculty, Infectious Diseases, AIDS & Clinical Immunology Research Center, Tbilisi, Georgia.
Abstract
The aim of the study was to observe the frequency of neutropenia during Pegylated Interferon/Ribavirin therapy in patient with chronic hepatitis C; to compare the efficacy of two strategies of management of neutropenia--with Interferon dose modification and with Neupogen administration; to compare the effectiveness rate of sustained viral response (SVR) in patients with Pegylated Interferon dose modification and in patients treated by using granulocyte colony-stimulating factor G-CSF-filgrastim. (Neupogen). Study enrolled 47 patients with chronic active hepatitis C, aged 23-64. (38 male and 9 female). All patients had HCV genotype 1b. Significant neurtopenia (ANC<750 mm3) and severe neurtopenia (ANC<500 mm3) developed in 41 of 47 patients (87%). 41 patients with neurtopenia were randomized into two groups. The first group--22 patients who received granulocyte colony-stimulating factor (G-CSF, or filgrastim) 300 mcg s/c weekly for correction of neutropenia and the second group--19 patients treated either with Interferon dose reduction or temporarily inhibit of Interferon treatment. In all 22 patients of the first group neutropenia was normalized without reduction and/or inhibit of Pegylated interferon. Neupogen was well tolerated and in all 22 patients the improvement of quality of life (QOL) was observed. It was concluded that dose reduction or temporary inhibit of Pegylated Interferon in the second group negatively acts on antiviral treatment response in patients with HCV genotype 1. In patients with PEG-IFN/RBV therapy Neupogen effectively manages neutropenia and gives opportunity to maintain interferon dose (without reduction). Neupogen has the potential to improve adherence rates, which may in turn improve SVR.
http://www.ncbi.nlm.nih.gov/pubmed/17660602
I would really appreciate that. I think he will be more receptive if I can back up the info with some links. Thanks so much for your help.
Well he is not right about that and if you want some valid info on it being used in hep c treatment give me a little bit and I will post some links you can print out and show to him that this med is used quiet frequently to keep people on treatment
What are Neulasta® and NEUPOGEN®?
Neulasta® and NEUPOGEN® are both white blood cell boosters. They are man-made forms of a substance called granulocyte (gran-yoo-loh-site) colony-stimulating factor that is naturally produced by the body. They stimulate the growth of a type of white blood cell called neutrophils, which are important in the body’s fight against infection.1,2
http://www.neulasta.com/starting-chemo-with-neulasta/about-neulasta-neupogen.html?src=ppc&WT.srch=1&SRC=2