Hep C Nurse Over Stepping Her Authority Yes or No

My doctor recently suggested that I take a 1/2 dose of Neupogen
rather than the standard dose because I had chest pains after the second dose.

My ANC  dropped low even before tx so the doctor  wanted to see if I could take nuepogen and start treatment.
When I called the office the Hep C nurse said I needed to give that a lot of thought because
I could have another reaction. I had chest pain with the second injection.

Has anyone ever hear of a nurse ignoring the doctors suggestion with a warning!!!
Now I don't know who to believe. There has been too much confusion surrounding my treatment.
Even my hepatologist and hematologist don't seem to agree on much.


Rosebud
,

[Trinity4]

Take the 1/2 dose and see how it goes.  Looks like you need the Neup and without it you'll get dose reduced or pulled off of tx. Many doctors pull the trigger to fast regarding ANC and prescribe Neup or dose reduce when it's not necessary.  ANC below 500 but 400 for sure is when Neup should be given.
Just because a nurse suggests something doesn't mean it will happen.  You're aware chest pain may occur even with 1/2 dose of Neup so that should give you an edge but don't let it cause you anxiety to the point you may experience chest pain.
I could not continue tx without Neup and I don't like it.  It's some nasty stuff but what other choice do we have?
Good Luck and stay the course
Trinity

[Rosebud41]

Trinity4

Thanks for responding.

I have not started treatment because my anc level is already low.
I have been tested for every thing you imagine as well as having a few biopsys, MRI's and the list goes on.  They can't find a reason for the anc.

The problem is  they don't want to treat unless they know they can bring it back up when it drops.  

I started treatment 1 year ago with someone who didn't know what they were doing and they started treatment and  he didn't check it for a couple of weeks until  the hospital called with an alert message. Later the doctor stated my ANC was 700 when he started and he provided no neupogen or anything else.

I've had other doctors refuse to discuss treatment because my ANC is around 800 or 900 most of the time.  

I think I've had Hep a long time and didn't know it until I started having some pains and forced the doctor I was seeing to look for everything I  (and I stress I) could think of.  She has since sold her practice and I can understand why. By the way she referred me to the first doctor who treated me.

I have muscle spasms in my back which also makes me a little fearful.

The present doctors wants to see if he get below my tolerance level with 1/2 dose.

Personally, I think the hep c has lowered the anc count.

Do you still think you'd go foreward because I really don't think I much of a choice?

[Trinity4]

Rosebud,

As long as you're with a good hepatologist and they monitor closely I would go forward.  You may not be able to tolerate the Neupogen.  Some people can't.... just like some can't tolerate the treatment meds.  However, I would consult with a specialist and remain under his supervision for the duration if that is possible.  Sometimes because of  geographic location it's not feasible to seek out a hepatologist as they are usually located in the larger teaching hospitals (metro)  
If you were on treatment and ANC was at 800 or 900 that would be good or at least it would be for me but because you are on the low side to begin with treatment will definitely pull your ANC lower but let the hepatologist make that call.  A good hepa will lean towards the aggressive approach with treatment.  They are not alarmed by low numbers.
That is what I suggest but your specialist should make the call about going forward.  I would take the Neup regardless and see what happens.
Good Luck
Trin

[jmjm530]

Truth is, the doctor can be right and a nurse can be wrong or vice versa.  Can I ask how low your ANC was when they put you on the Neupogen? and what it is now?

From what I've read here, most people are put on Neupogen unnecessarily. For example, my liver specialist didn't blink when my ANC fell as low as 300.  so I guess what I'm saying is that you may not need Neupogen at all. Factor in the chest pains, and it could be a no-brainer. Anyway, assuming your ANC is above 300, I'd go with the nurse, but of course this is just a nonprofessional opinion. That said, there are studies that show that low  that low ANC caused by combo treatment does not pose the same risk, or in fact any risk of increased infections. A lot of medical teams are not up to date on this fact.

-- Jim

[Trinity4]

Jim,
Didn't you stay sick through a lot of tx?  I was headed that way as well before Neup and don't have that problem anymore.  You can take all the antiobotics in the world but if there is nothing for them to work with it's only temporary.  Respiratory issues with me were very bad and antibiotics weren't working. My body could not fight off infection anymore.  Neup gave me the boost my immune system needed.  
Chest heaviness and breathing no problem since Neup.  No more infections.  Something to say for that.
Trin

[jmjm530]

My infections during treatment didn't correlate at all with my ANC levels, which while very low at times, was also well over 1000 at other times. As to being "sick", a lot of it had nothing to do with the type of infections that could be caused by low ANC. But more important, let's say more relevant, and then how you or I reacted to treatment -- we are only two cases, very skimpy anecdotal data. I posted a study using a larger population group numerous times showing no correlation between infections and low ANC on SOC treatment. I'd be happy to pick it up again if you want. That, and the fact, that several here, including myself, who have treated with well respected hepatologists, also were not given Neupogen at the levels commonly seen here. my personal opinion is that the more experienced hepatologists, with their much larger patient bases, and usually affiliated with teaching hospitals, tend to rely less on outdated protocols, and more on current studies and equally important, clinical experience. YMMV

-- Jim

[Trinity4]

My infections were related to low ANC and Atlanta hepa confirmed Neup was necessary through the end of tx. I never bounced back up once I went low.  Studies are fine but they don't apply to everyone and aren't meant to.  You seem to have an adversity to Neup but will promote Procrit.  I know they are different drugs but each is a rescue and I've seen Procrit prescribed when it wasn't necessary as well.
If Neup works than that's what is important and it was not prescribed unnecissarily in may case.  On the contrary, would of been pulled of tx without it.
Studies are nice but don't apply to everyone.  

[jmjm530]

I agree studies don't apply to everyone, but we were talking about a third-party here, with chest pains. We weren't talking about you or me.  So in that light, I would weigh study data over anecdotal.

As you state, Procrit a Neupogen are very different drugs. And one of the big differences is that hemoglobin tends not to bounce up in any dramatic fashion without Procrit. ANC, on the other hand, often as dramatic bounces up without Neupogen. One week I was ANC 300, two weeks later and see 1200. Others have reported similar. As the Procrit being overprescribed, my observations here are the opposite. It's under prescribed, and we have seen people both suffer and get pulled off of treatment or dose reduced because of it. And it has nothing to do with the numbers. One person may function very well at hgb 10, and another can be on the edge at hgb 11.6.  I was the latter, early on in treatment. Later, I was able to function in the low 11s. Without Procrit, I would have had to either does reduce or possibly stop treatment. I'm in no way saying your calls  were wrong for you, just stating my opinion based on both personal experience, consultations, and study data.

[CoWriter]

I remember doctors putting patients in the hospital to give them medication that had previously caused severe reactions.  I don't mean for every injection...just once to see if it happens again.  Ask your doctor if he would be willing to do something like that.

If not, then at least ask him, "What do I do if I have chest pain again?"  And I would make sure you take the Neupogen at a time when it's easy to reach your doctor.

Co

[portann]

It seems like a decent strategy on the part of your doctor for you to pre-dose a half-dose of neupogen to see if you can tolerate it before starting tx.

Co's advice is good, to either arrange hospitalization as a precaution or make sure there's a clear plan in place, if your chest pains return at home.  

If you can't, it's worth weighing your competing health issues before deciding which to tackle first.

I wonder if you could post your liver biopsy results. This could influence whether you need to treat for HCV immediately or watch and wait until such time that you have a proper diagnosis for your possibly chronic neutropenia.

If your liver biopsy results permit, is it not a wiser course to first aggressively pursue what the cause of your low ANC's are, since they are not caused by specific medications?

Just a glance at the Merck Manual shows many possibilities:

http://www.merck.com/mmhe/sec14/ch174/ch174b.html

I sympathize that you've already had many inconclusive tests but somewhere there is an answer to your low ANC. Could it be genetic?

I don't know the significance of chronic low ANC, when not induced by medication, but I would really try to find a specialist who does.

[Rosebud41]

Thank You, Thank you all a million times over!!!

Now lets see if I can address some of the issues. First my doctor is at a large, urban, teaching hospital. As a matter of fact he heads up the department. I my opinion he is rather fearless. He has indicated he has seen people left on treatment when their numbers get as low as .3...
He is know throughout the state for treatment of hep C.

What I am really concerned with is the fact that I have rolling pain and a tightness in my back muscles without Neupogen. I just wonder if the Neup is encouraging the pain in some way.

Again, thank you very much

[Rosebud41]

jmjm

Thanks for your help it is greatly appreciated.

Perhaps, I need to clarify that I am not on treatment now.

My ANC dropped to 800 a year ago without treatment.

I was put on treatment the first time by someone who was not prepared for me to drop to .01 and snatched off after 2 injections

I would be thrilled to have 800 on treatment.

Another problem is my hematologist wants to start with low doses of  interferon rather
than try Neupogen.  I'm not sure he is aware of my total history or maybe.
He's concerned about my previous incident.
Sometimes he can be forgetful.
Whatever it has certainly served to confuse the issue.

Thanks for the help!!!

[Rosebud41]

Thanks:

The staff at the clinic are really over workerd and not that nice, and most of the time when I make request I get a big no. But, I will see if that's a possiblity. I doubt it because the nurse does not seem to even want to give me the injection in the office.

There's something going on in the office because she was really nice earlier this year.

I had considered taking the medication when the office was open not on Friday night.
But, thanks for mentioning it again.

Rosebud

[jmjm530]

Thanks for clarifying, my previous comments on Neupogen for all related to being on treatment. "CoWriter"   Had a good suggestion about trying your next injection in a controlled and supervise hospital setting. In fact, it may offer a good opportunity to give you a complete workup, and to get all your specialists on the same page

may I ask  your genotype, and what stage liver damage you have? also,  did you respond to the last treatment before they pulled you off? in other words, what was your pretreatment viral load and how did it change under treatment and at what week?

I ask because given the problems you've had previously, and your low ANC currently, I question why you would want to treat again unless you have significant liver damage. Keeping in mind, that a lower dose of interferon will lower your chances of SVR.

-- Jim

[Rosebud41]

Thank you...

I have been to many, many specialist in the last year.
Eveyone was trying to get a handle  on the cause for the big drop.
Personally, I believe it's associated with the Hep C.

I don't think it is genectic because they trace it going down for sometime.
However, it was never so low that doctors paid it attention until the big drop.

Unfortunately, I was trying to find out what was wrong for a year prior to the diagnosis.

Personally, I am in too much pain to look around a lot longer.

Bless you all big time for your help.

Rosebud

I even had a doctor call and suggest I had gall bladder disease and tell to go to the emergency room. Fortunately, I knew better than to run to the hospital with that.

[puppiepaws]

i sound kinda dumb here but what is anc?

[Trinity4]

Absolute Neutrophil Count

Here is a link for calculating ANC    http://www.mylan-clozapine.com/ANCCalc.asp

I use the second form to calculate.

White BloodCell Count X Neutrophils = ANC

[portann]

Dear Rosebud,

The issue with your current pain ("too much pain to look around a lot longer") could be central to your treatment decision.

I don't want to discourage you in any way - quite the contrary - but you need to know that some people here find that interferon makes their pre-existing aches and pains worse, especially ones associated with autoimmune disorders. This is due to the complex way that interferon heightens your immune system. So if you're going into tx with pain, you have to plan accordingly, rather than expect that the tx will resolve your pain. I wish that interferon would kiss all our pains goodbye but I don't think that's a realistic expectation.

My starting point, if I were you, would be what my liver biopsy says about my current stage of liver disease. That would be the most significant issue for me, given an already hard to tolerate level of pain, pre-tx. My own hepatologist thought I should wait for better and shorter tx's, based on my biopsy.

Has your hepatologist discussed the watch-and-wait approach or does he think it's necessary to move on this as soon as possible? Shorter tx's would make a pivotal difference if daily pain is hard to control.

Puppiepaws, ANC is an acronym for absolute neutrophil count, and neutrophils are part of your white blood cells.

[Rosebud41]

Thanks for reminding me that the low dose thing does not work.
I don't think the plan was for me to stay a low dose for a long time.
My doctor said he would not start counting weeks during the low dose period was over
he is just testing my tolerance.

I would have to search out my numbers but I know the numbers were not that high and they went down after the two injections. The claim was I was right between stage 2 /3.
I also remember my viral load  was average not real  real high.

Tonight, I'll try to locate that information and send it you.

I was only on treatment two weeks when the less than knowledgable dr. pulled the plug.

One of my other complains is tightning of my back, kind of like muscle spasms.
I've had stress tests and the rest....really I'm too sick not to try something now.

This goes on back and forth during the day.



Rosebud41

[Rosebud41]

Dear Portann;

All the pain stopped duing the two week period I was tx.

I hope you're incorrect and it does not get worse.

My doctor says he does not think I should wait for the shorter treatment.

My age and condition of my liver I believe are factors.

I'll give serious thought to what you've pointed out for me, but I'm so tired of my back muscles getting  tight whenever  and for no apparent reason. I've seen two rheumatologist, and a neurologist.

Later this week I' have another MRI maybe that will show something.

Thanks for being so kind and taking the time to give  me much needed advice.



Rosebud

[Rosebud41]

Dear Portann;

All the pain stopped duing the two week period I was tx.

I hope you're incorrect and it does not get worse.

My doctor says he does not think I should wait for the shorter treatment.

My age and condition of my liver I believe are factors.

I'll give serious thought to what you've pointed out for me, but I'm so tired of my back muscles getting  tight whenever  and for no apparent reason. I've seen two rheumatologist, and a neurologist.

Later this week I' have another MRI maybe that will show something.

Thanks for being so kind and taking the time to give  me much needed advice.



Rosebud

[Rosebud41]

Dear Portann;

All the pain stopped duing the two week period I was tx.

I hope you're incorrect and it does not get worse.

My doctor says he does not think I should wait for the shorter treatment.

My age and condition of my liver I believe are factors.

I'll give serious thought to what you've pointed out for me, but I'm so tired of my back muscles getting  tight whenever  and for no apparent reason. I've seen two rheumatologist, and a neurologist.

Later this week I' have another MRI maybe that will show something.

Thanks for being so kind and taking the time to give  me much needed advice.



Rosebud

[jmjm530]

I'll give serious thought to what you've pointed out for me, but I'm so tired of my back muscles getting  tight whenever  and for no apparent reason. I've seen two rheumatologist, and a neurologist.
----------------------
Like Portann said, I'd make my decision on whether to treat or not based on biopsy and not symptoms. The fact your muscle tightness resolved after two weeks of treatment last time does not necessarily mean it was because of viral suppression. It simply could've been a temporary effect of the interferon. In other words, even if you treated successfully, there'd be no guarantee that these muscle issues would resolve.

[FlGuy]

Going back to the thread's title; "Hep C Nurse Over Stepping Her Authority"  It seems that in the world of medicine there are many opinions that are given by people who are outside of the knowledgeable circle who infringe on those who actually have the knowledge, education and expertise.  If Hep C Nurse continue to take these positions of medical and treatment directors where will it leave us forum posters who rightfully fill that space?

[portann]

Let's forgive the nurse her presumption.

[Trinity4]

I took the postion of medical director today during my doctors visit.  Local hepa never mentioned a 48 wk PCR which in my case makes sense because why would I want to extend if not UND.  Viral breakthrough is very unlikely at this point but none-the-less he should have ordered it.  His remark was "oh yeah, I don't have any problem with that.  You're right, you probably wouldn't want to continue if not UND."   What the hell.  I also told him to write Heptimax on the order.  He never heard of it.  As God as my witness, this guy is a certified hepatologist.  Scary isn't it?  
I had a plan B though cause if he wouldn't order it Pearlman would.
Trin

[jmjm530]

As God as my witness, this guy is a certified hepatologist.  Scary isn't it?  
------------------------------------------
You got me running under the covers, girl :) Yeah, you really got to direct your doctor visits almost regardless who you are seeing. I always brought a list of what I wanted to get ordered, etc, before I left. After all, these are busy people, let's give them a little break, huh.

[Rosebud41]

Dear Trinity4

I feel your pain...

The first doctor I had is in a book that says he 's one of the top 100 doctors in the area.

Where do they "grow "them?"

Fix yourself a cup of tea and put your feet and be thankful you have enough expertise to share some knowledge with the "specialist."

[portann]

If I told you the half of what my renowned hepatologist failed to do, I'd be the laughing stock of this forum.

Kudos to you and put those feet up for a minute.

xoxo

[springfever]

"I posted a study using a larger population group numerous times showing no correlation between infections and low ANC on SOC treatment. I'd be happy to pick it up again if you want"

I would like to see that, Jim, if it is not too much trouble.  

My doctor suggested neupogen may be needed as I get ready to start treatment.  My ANC is 1.79 or 1790; 6.4 (wbc) 28% (neutrophils); if I'm doing the math right.  That seems high compared to the numbers rosebud and trinity are talking about.

Rosebud - hope you feel better soon and thanks for bringing up this topic, very timely for me too.

[Rosebud41]

I think your numbers sound a little high to be trying out Neupogen without knowing if you ANC is actually going to fall. If I could have maintained 1000 ANC my doctor would have started treatment and follow with Neupogen if my numbers fell.

I don't all the details of you situation, but maybe some of our more knowlegable members might comment.

I just know that I would have thrown a interferon kick-off party with those numbers.

The best advice I can give you is to make sure you have an experienced hepatologist.
I made the mistake of starting with someone who didn't know what they were doing.

jmjm530 description of what happened with their doctor  unfortunately  is not unique.

The best advice I can give you before you get started is:


MAKE SURE YOU"VE GOT AN EXPERIENCED HEPATOLOGIST!!!!

Then make sure you monitor their every move as it relates to your treatment
  

Rosebud

[springfever]

I'm realizing that my numbers aren't so bad now, thanks to your thread.  I started another thread and posed my question - sorry didn't mean to hijack yours.  Seems the consensus is to wait until neup is really needed.  Not to use as a preventative measure.
I am on my second doctor.  1st one hepatologist (concentrated in clinical trials) and 2nd one internist with wealth of experience with hep c.  Where is that magical hepatologist that I can just fall backwards and trust that she/he will catch me??  

Glad you started this thread.  I will monitor all.  Thanks and best wishes to you.

[Rosebud41]

Thanks...

To all those Forum members that offered their very generous support the past few days.

With your kind, well informed support, and the encouragement of my primary care doctor I took 1/2 dose today.

His nurse gave it to me and I stayed in the waiting room for an hour as a precaution.

My primary care dr. reminded me that my hep doctor is considered ,by his colleagues, to be tops in his field. (I didn't even tell him about the nurse)

However, without the Forum this whole matter could have become a  big disaster.

Thanks to each and everyone who was concerned enough to help me.

Sincerely,  Rosebud