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4896357 tn?1360670904

WBC Count Low; Told To Skip 2 Interferon Shots.

I don't have the numbers but the Doc's office help called me the morning after my latest CBC and I was told to skip 2 shots. She said the number had to have been below 2. I don't have insurance and can't afford special drugs or blood transfusions. Any opinions on this? How will this compromise my tx? I'm on week 18 of Peginterferon, Ribaviron & Victrelis. I thought I was doing pretty well, just mainly short of breath.
33 Responses
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317787 tn?1473358451
Hi you probably know this but your doctor was expecting to see your WBC rise, not fall.  He is basing decision on stopping based on thinking you have skipped two shots.
I think...when you first wrote...that I checked my blood work and gone under 1.4 in wbc and under 500 on ANC a few times during tx.
I was not allowed any rescue drugs
Like you, I would not stop but... saying that... I would reduce the dose, don't kill the host while trying to kill the virus :)
Good luck
Helpful - 0
4896357 tn?1360670904
Thank you. Bear with me folks. I'm going this alone and getting a phone call from a doctor at 9:30 PM is not something I'm used to. I am going to see him at his main office in about an hour. I will try to get copies of all my bloodwork and try to understand "ANC".  There is a good thread running about that now. I will get on the Neupogen ASAP. Maybe I can talk the doc into a shot today if he has it. I should be eligible to get it for free. I kind of freaked out over that phone call. I'm sorry. Someone asked me awhile back if I was prepared for this tx. Heck no I wasn't. I was just diagnosed last September. I'm used to being healthy. I will post an update if there is any news.
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Avatar universal
My husband had to take Neupogen during his second failed treatment, which was daily Infergen shots (a variety of Interferon) and 1400 mg of Ribavirin daily.  This treatment was called Consensus Interferon treatment.  It was pretty rough.  His WBC dropped (I can't remember to what level) and his ANC dropped, so they put him on Neupogen.  It helped fairly quickly, I think, within a week his WBC and ANC had increased.  My feeling is that since this is your best chance at treating HCV, you should do everything you possibly can to complete treatment, whether it means reducing Interferon and/or taking Neupogen, all under doctor's orders of course.  If you're not comfortable with your doc, try to switch.  You do not want to have to go through treatment again.  JMHO.
Advocate1955
Helpful - 0
3159077 tn?1356031131
I understand your concern. In my 5th week I was told to reduce my shot to 80 mcg. from 120 because my platelets went down to the 60's. I thought the NP was being hasty since the recommended first dose reduction is at PLT of 50, so I reduced by a lesser amount (105 mcg., then 96). You can see this on a chart in my profile pics. I had read about people's platelets going to the 30's, so I was comfortable with my decision and kept a close watch on my labs. In a few weeks I lost enough weight so that the 96 mcg. was the right dose for me. I was going through the same thought processes you are and that's how I handled it.

I ended treatment with WBC of 1.5 and that was the lowest it got. I don't know at what levels it becomes dangerous, but obviously your doctor is concerned. I know the risk of infection is a problem with WBC so low. I am not recommending you to do what I did, I'm just telling you my experience. Hopefully some of the more expert forum members will have some thoughts. Good luck and I hope you can straighten this out.
Helpful - 0
4896357 tn?1360670904
New developments and updates and more help needed :(. Instead of skipping two shots of interferon I went against doctor's orders and took reduced doses. Remember, he was concerned that my WBC count had dropped to 1.65. No mention was made of ANC. I use the Pegintron Redipen, .5 ml. I reduced one dose to .3 ml and the next to .4 ml. Monday I was back to the full .5 ml. Yesterday morning I had a CBC. Last night at 9:30 my doctor called me and told me to stop the interferon shots because my WBC had dropped to 1.3. No mention of ANC. He seems only concerned about the WBC count. He prescribed 6 doses of Neupogen, 400 mg, to be taken every other day. I'm doing an expedited application for drug assistance through the Safety Net Foundation which was posted earlier in this thread. It will still probably take a good week to get this processed. I lied about skipping two shots. I don't want to skip the next shot. This is my best, and possibly only, chance at tx. Everything changes next year regarding health care in the USA and they want to force me to purchase health insurance but I am tapped out. In your opinions is 1.3 too low and at what number am I at the critical point? I'm planning to take that next full dose of interferon and that should be about the time I can start the Neupogen shots. Does Neupogen build up the WBC count and how long does it take? Is my doctor being too cautious? Should I start looking for a new doctor who is more up to date on acceptable blood counts? I'm doing well at week 21 of triple w/Victrelis, type 1a. I was not RVR but close. Critical week 24 VL test is coming up and I MUST be und. I don't want to jeopardize that. I don't like lying to my doctor but he seems to be overly cautious and hurting my chances of success. Any advice or comments please. I know that we are not doctors so I guess I should be asking for "opinions". Thank you.
Helpful - 0
4748379 tn?1472048053
your posts are very informative and i have learned from them and the threads. So, keep posting, dear.
Helpful - 0
4896357 tn?1360670904
Thank you. I'll work it out.
Helpful - 0
Avatar universal
Agree with a few of the other posters, I would reduce the INF not completely skip it.

If not UND at 24 weeks stop. No sense treating 36 weeks if not UND at 24. Personally I would have stopped at 12 weeks if still UND.

The biggest concern you should have is if your doctor knows what they are talking about. You treatment plan just don't make sense and is definitely not up to date with protocol.

Best of luck
Helpful - 0
1986676 tn?1329862471
My normal neutrophil count is naturally low due to autoimmune neutropenia.I have dropped as low as 02. Since you can't pay for additional meds I would have expected you would be off one and then checked to see how quickly you bounced back.  

Also, I have read that the risk of infection is not as great as it is for a cancer patient.

My interferon was reduced at 12 weeks and I completed treatment at
the lower dose of 135 mg. Unfortunately, I still had to take 3 half doses of Neupogen injections weekly due to my naturally occurring neutropenia.I was extremely sensitive to Neupogen . My would numbers would soar but drop like a stone when I took the Pegasys  I might add nobody in their right mind would want to suffer that nightmare. If it were not for this forum and the prayer of my mother I would have never completed tx.

I agree maybe you should touch bases with another doctor. My blood was checked every week for 48 weeks. I think you should start requesting your numbers and keep some records of your own. Reva
Helpful - 0
Avatar universal
That's with a VL TMA test (10 IU) .. the PCR testing is not near as sensitive (typically > 40 IU).
Helpful - 0
Avatar universal
The theory behind the reduced ANC protocols is base on cancer (radiation therapy) and study after study concludes that HCV patients don't get into trouble (infections) like they do. My doc explained it as "pegilated interferon alpha puts your remaining immune system on hyperdrive.. that's what it's designed to do". But even then his limit was 500 and he let that slide for a bit but when I hit 395 I got Nupogen. Required 1 shot ever 10 days which kept my ANC between 700 and 1050. You might want to investigate the free or reduced Nupogen avenues others have talked about, print them (along with a study or two establishing safety at an ANC 500 level) and take them to your doc. My doc was going to make me wait 6 months for my after treatment SVR test so I printed a study showing only 1% difference between 4wks and 24wks and got my order then (@10 wks).
Helpful - 0
4896357 tn?1360670904
I bookmarked the neupogen site for future reading and reference, thanks. I see this dr. in one of many offices that he uses. I think that Monday I will drive to his main office and get the paperwork. I will take a reduced shot of Peg-Interferon. Then I will go from there. There have been other red flags that this doctor may not have a lot of experience with hep C. The first Dr. that I saw for it quoted me $170,000 for tx! I'm getting tx for the cost of the bloodwork. $15 for CBC, $500 for VL.
Helpful - 0
Avatar universal
flcyclist makes a good point. This decision is certainly base on your Absolute Neutrophil Count and if the 'office girl' can't find it...something is really wrong. The Pegasys disclaimers above must be taken in their whole context though IE-liability avoidance. Almost every study I've read never alter the dosage at all above 500...and I've read a few times that HCV treatment patients shouldn't get into trouble until it gets below 100. But since she couldn't find it ??? and who knows, you could be at ?? And if your doc doesn't call you well I guess you have no choice but to reduce. But you know, if you walk in there they have to let you see your labs. I understand your doc seems like a very honorable person treating you for free (as my grandfather did but those docs are rare today) but you have to be your own advocate because if he/she are wrong...they just move on but you loose. In my line of work, I unfortunately have to step in and become a patient advocate a least once every couple of weeks.
Helpful - 0
Avatar universal
Go to www.neupogen.com and click on AmgenAssist and answer the questions.  This should get you assistance if not free neupogen
Helpful - 0
1669790 tn?1333662595
Since dose reductions are based on the neutrophil count (ANC), then your doctor must know this number in order to make this decision.  It sounds like his office staff doesn't know how to read the lab report, which doesn't surprise me.  

The following is from the Pegasys package insert: "Dose reduction to 135 µg PEGASYS is recommended if the neutrophil count is less than 750 cells/mm3. For patients with ANC values below 500 cells/mm3, treatment should be suspended until ANC values return to more than 1000 cells/mm3. Therapy should initially be reinstituted at 90 µg PEGASYS, and the neutrophil count monitored."
Helpful - 0
4896357 tn?1360670904
"You guys are not doctors and cannot advise me to go against his orders"

That didn't come out right! I meant that I wasn't going to ask if that would be OK because the folks here are not doctors, even though many seem to know more. My Dr. is a Gastroenterologist. I don't want to say more because he might see this. I cannot change Drs. because he is treating me for free. That means that I have to be informed and help with my own tx decisions. Thank you all for very knowledgeable and helpful input. My next appt. is June 21. I think that I will take the reduced shot and not skip 2 shots. Apparently he is more comfortable seeing wbc count over 2. Now I need to figure out how to tell him that under 2 is OK and I can get Neup shots for free if needed. With luck wbc count will go up.
Helpful - 0
Avatar universal
Call back the "office girl" and ask her what your Neutrophil # or % is.  You can calculate your ANC level with knowing your WBC is 1.65.

My WBC was normally under 2 and ANC as low as .31.  I was giving Neup shots for about 1/2 of tx.  Like Cando said you can get it free and she should know how to calculate your ANC levels.

You are going to have to be your own advocate here.  Get all your lab results and make any appt with your Dr quickly
Helpful - 0
4113881 tn?1415850276
"You guys are not doctors and cannot advise me to go against his orders"

Not sure anyone here claimed to be a doctor nor suggested you go against your doctors orders but merely offered suggestions based on life experience. Regardless if you are treating for free, you still have the right to actively participate in your treatment by educating yourself and making informed suggestions. Hope you figure it out.
Helpful - 0
Avatar universal
Not sure what makes your doctor think with that level you might end up in the hospital, and I agree with Mikes statement risk of infection is really low....... My ANC got as low as .3 and my doctor never freaked but he also deals with TP patients.

As for neupogen, you can get that for free also, many here have. She can't find your ANC levels? Oh my, is she also the one who said you can skip up to 4 shots?

Sorry but the care your getting doesn't seem to good.
Helpful - 0
4896357 tn?1360670904
I appreciate all of the feedback. I got some info from the office girl. WBC is 1.65, This can also be expressed as 1,650. She couldn't find an  "ANC". RBC is 4.1. Hemoglobin 12.4. My Doc knows my financial situation and is trying to keep me from ending up in a hospital. He is treating me for free and I'm getting the meds for free. You guys are not doctors and cannot advise me to go against his orders but I am leaning toward either doing a low dose shot for 1 or 2 weeks or skipping just 1 week and getting a CBC before the next shot. I don't want to jeopardize my tx because my doc is being extra cautious.
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Avatar universal
           my lab work comes back as wbc with differential.  mine was below 2  most of tx.  when my wbc with diff. hit 1.6, my dr had me reduce my peg to 135 mcg, for one week. i questioned my dr, and she replied that was tx protocol.  the next week my wbc was at 1.9 and cotinued at full dose.  
            when i was on soc in 2008, my dr had me skip a full dose and i became detectable.  peg inf has a 5.7 day half life, so i would question my dr.   dont have the knowledge to tell you yhat the VIC and RIB can sustain your status without peg.
                                             barry
Helpful - 0
Avatar universal
Check the Nupogen thread a few prior to yours here. A post by Bill1954,
re- med help purchasing (Nupogen) through needymeds.com
Helpful - 0
Avatar universal
he started me on Nupogen ("or we'll have to cut back on your Peg") when my proceeding labs came back:
1- ANC  462*
2- ALC 1085
3- WBC  1.9
It was all about the ANC as my WBC total had dropped lower before and not a word about it. Lymphocytes dropped from pre-treatment but were still within normal limits. Read studies stating that with HCV 300 should be OK and that it doesn't get dangerous till about 100. Nupogen worked for me with one shot every 10 days (155#, 59 yrs, stage 3, peg-180/d, rib 1000/d).
Good Luck
Helpful - 0
Avatar universal
To my above post I will add an event in my treatment: I was plagued with neutropenia throughout treatment and my doc was fine with it "as long as it stays above 500". It hovered between 550 and 650 most of the time. I eventually went on Nupogen the last 2 months but prior to that I get a call from another one of the gastro docs in his group (weekend coverage detail) and she's near panic telling me my labs just got back, my ANC is 550 and I need to cut back on my ribavirin (now this is a board certified gastroenterologist believe it or not) . Well, I ignored that (it's the economy stupid) and the next week my regular doc concurred with my call...but as they're all in the club, did his best to CYA her incompetence.
Helpful - 0
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