Hep C Nurse Over Stepping Her Authority Yes or No

[Rosebud41]

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
,

[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

[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]

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 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.

[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

[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."

[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.

[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

[portann]

Let's forgive the nurse her presumption.

[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?

[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.

[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

[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

[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.

[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

[puppiepaws]

i sound kinda dumb here but what is anc?

[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.

[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]

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

[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]

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

[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.