Dr. Says Neupogen is Not Causing My Pain!!!

[Revalation]

My doctor says my back pain has nothing to do with Neupogen injections.
I didn't have this pain until I had my Neupogen increased.
He suggested I see my primary care provider with regard to the matter.

I know it's the Neupogen. I also know my internist is not going to
treat this issue because he dosen't want to treat me with anything during tx.

Absolutely, nothing stops the pain. I've read cancer patients are often given serious pain
medication whilte treating with Neupogen. Given this info it's apparent Neupogen can cause very serious back pain.

Got any suggestions how I should handle this problem? My doctor is talented but he'swrong about this.

Reva

[Revalation]

I bought some Claritn today. Let you how it works.

thanks reva

[Idyllic]

I read this on forums & blogs but never really found a study documenting Claritin (Loratidine) relieves Neupogen (filgrastim) or Neulasta (pegfilgrastim) induced pain.

I found where Pegfilgrastim is being studied however

http://clinicaltrials.gov/show/NCT01311336

____________________
Published Studies Related to Claritin (Loratadine)
http://www.druglib.com/druginfo/claritin/

[NoBonePain]

I am taking Neupogen shots in conjunction with chemo therapy.  Bone pain is a documented side effect for Neupogen.  For me it starts in my lower back and in one instance was so severe, I felt encased by a constricting band of pain from my knees through my neck, it even impacted my respiration.
Pain relievers are not particularly effective once the pain starts. However there is a simple and highly effective drug that taken prior to Neupogen, usually negates the pain, or significantly minimizes it.  24 Hour Claritin (Loratadine), 10 mg., taken at least 1 hour prior to Neupogen.  This is part of my Oncology team's treatment plan for Neupogen.
Should you experience bone pain, the only effective relief I have found is heat.  Hot shower, heating pad on my back and an electric blanket.

[flcyclist]

Read your message again and not sure if my last response addressed your question.

By the hematologist being conservative, I mean his threshold for neup was below 1.0.  The more experienced hepatologists have been using < 0.5.  As you're probably aware, there is a higher risk of infection for cancer patients with a low ANC.  Not so for HCV.  They don't want to see anyone in their care have a serious infection, so I do understand the CYA thing.  But, as you are experiencing the sides from neup, that is certainly a factor in the decisions, too.  Hang in there.  This will be behind you soon.

[flcyclist]

The Friday interferon shot pushed the ANC down, so for the Monday cbc the ANC was usually around 0.2.  The neup shot on Monday boosted the ANC to around 0.5 for the Thursday cbc.   Prior to each neup shot I had a cbc run.  This pattern was very consistent for me during tx.  Sorry for the confusion.  

I was referred by my GI to the hematologist at the cancer tx center.  You are correct - they have little experience in dealing with HCV patients.  He only had treated a few.  Although I wouldn't go this route again, it worked for me.  They did have a wonderful staff that made the visits enjoyable at least.  

[Revalation]

In your previous message you referenced having  very low  numbers, and now you indicate you had a very conservative doctor who would not accept 0.5. I  don't understand the conflict in your posts. Maybe I'm confused.

Regardless, I'm not going to be in this kind of pain long term.
Someone is going to find a way of doing this better, but first I've got to do the research.

At a cancer clinic you can get numbers really fast and at all hours of the morning. That is very handy. Been there and done that before. I wish I still had  that option. but as it turned out the doctors I was involved with then may have known cancer, but they didn't know Hep C very well, and they certainly didn't have the experience to work with a case like mine.

Again thanks for your input. I can learn something from everyone.

Reva

[flcyclist]

"Did you have the CBC twice weekly ?"
--------------------------------------------------------
Yes.  Prior to each neupogen shot (480 mcg/1.6 ml) they ran a cbc while I waited - took just a few minutes.  I saw a definite pattern of a very low ANC on Monday, then Thursday's ANC was higher.  If I couldn't make it into their office until Tuesday (cbc + neup), the Thursday ANC was always much higher.  So, one day made a big difference for me.   It got to the point that for the last few months of tx, I got very frustrated with 2 trips per week, with the Thursday cbc being around 0.5-0.7, I started missing these appt on purpose.  The one shot of neup per week seemed to push my ANC back up to .5 or better which I was comfortable with.   The adminstration of neupogen was being overseen by a hemotologist at a cancer tx center, and they are very conservative with the ANC.  I had no luck trying to convince him that an ANC around .5 was acceptable.  I don't recommend anyone else doing this and feel I might have been taking a bit of a risk.  But based on the literature, some of what Will referenced helped me make this decision.  

[Revalation]

Yes, I do get tested every Thursday before the Friday Pegasus.
Your dosing schedule is what I thought would work, but nobody asked me.

With half doses of Pegasus I've been as high as 6.7 and even 10.
Then there were several weeks of 1.6. I think they jumped the gun when
they added the extra  injection without rearanging the injections. I really sore in the numbers with just a 1/2 dose. I don't want to take this matter into my own hands, but I'm not going to suffer for the next 5 1/2 months.

Thanks your info was extememly helpful. We may not react exactly the same but at least I know my thinking is rational.

Did you have the CBC twice weekly or what? I may have to experiment
if nobody else will help. I was not hurting until the 3rd shot was added.


Reva

[flcyclist]

I also had a very low ANC starting at week 8 and continued with neupogen 2x per week for most of my 48 week tx.  The day of the week the cbc is done in relation to the interferon shot really does make a difference.  I did the interferon shot on Friday eve, then had a cbc run on Monday - the ANC was often the lowest on Monday at around 0.2, sometimes lower.  The got the neupogen shot.  Then on Thursday the ANC was often around 0.5-0.7 and had the second shot of the week.  The last few months of tx I started skipping the Thursday shot.  However, after eot I had to continue with the one shot of neup per week, since the ANC took almost a month to come back in range.

Do you have a cbc run prior to each neupogen shot to determine your ANC?  

I did have some minor achy bone pain, but it was difficult to separate from the crappy feeling of the other meds.  Since I had to continue the neup about a month after eot, the side effects became a bit easier to identify.  

[Revalation]

My Pegasus dose was reduced not the Neupogen.
They added more Neupogen because when they tested on Mon. rather
than the usual Thursday my neutrophil count was .2. From that they determined I was too low early in the week and added more Neup.

I hope I'm answering your question. I'm not sure.

Reva

[orphanedhawk]

If you were doing alright before you switched your lab day, why can't you simply go reduce your dosages again ?

[Revalation]

I've read lots about cancer patients who have to treat with serious pain meds because of pain from Neupogen. The pain lessens because some people don't have to take it all the time. I will probably, unless there's a miracle, be taking it until I finish tx.

Tomorrow I will call my pain doctor. I do have one that I've visited in the past.  Today I had family issues.

Thanks,
Reva

[Revalation]

I'm on Week 24 of 28. I have had a dose reduction and was doing well until they changed my lab day and found I was dropping too low early in the week. I started not to change my test day because I suspected I was too
low early in the week. When they got the results they added an additional dose.


Reva

[Revalation]

Thanks for your link. I will read it this evening...

I suffer from autoimmune neutropenia. My neutrophil count is low even without treatment. With two injections per week I was still dropping to .2 which as you know is extremely low.

Regards,
Reva

[Idyllic]

What kind of pain meds doo cancer patients take for Neupogen? I think I mentioned this before but when I was lurking on cancer forums, blogs and groups I saw more than quite a few people thought Loratadine (Claritin) would aid with Neupogen bone pain.

Did not happen to find many journal articles or trials that support this however.

http://clinicaltrials.gov/ct2/show/NCT01311336
http://clinicaltrialsfeeds.org/clinical-trials/results/term=PEG-FILGRASTIM+NEULASTA
http://www.myelomabeacon.com/forum/loratadine-neupogen-t420.html

________
I am not one to suggest doctor shopping but other than dose reduction or perhaps the kind of trouble shooting Pooh suggests I am not sure what to say.
I still have not aken my Neupogen shot yet.

I think I am going to have Labs first. I administered 300 mcg on Sunday the 2 of September and my ANC shot through the roof. I want to see if it dropped back down to .40.

___________
Hang in there!!

[orphanedhawk]

I can't recall how far along you are in treatment but have you considered a dose reduction ? Reducing the dosage of my interferon raised my anc to where I didn't need neupogen.  If you're close to the end of tx, and on taking a full dose of interferon, this might be the best route for you.

There is no doubt in my mind that the pain can indeed be caused by nuepogen.
The first time I did tx, I was doing neupogen twice weekly and I recall lying in bed with aching bones.

This time, I took one shot, and it hurt just to walk across the room. And skeletal concussion caused pain.

[pooh55811]

I did send you a message but will post here in case it helps others:

I know you have had a lot of back pain and I am sorry to hear that. It makes Tx very difficult for sure.  I really do not know how the doc can say it is not related to Tx. To begin with, the meds cause a lot of muscle and joint aches and pain. But you are also on Neupogen and I found this in drugs.com:

"Musculoskeletal"

"Musculoskeletal symptoms have been the most frequently reported adverse effects of filgrastim therapy. Bone pain has been reported in approximately 22% of patients. Reactivation of pseudogout occurred in a patient receiving chemotherapy. Postmarketing reports have included decreased bone density and osteoporosis in pediatric severe chronic neutropenia (SCN) patients receiving chronic treatment with filgrastim.

Bone pain associated with filgrastim usually has localized in the lower back, posterior iliac crests, and sternum. Bone pain primarily occurred at initiation of therapy due to a transient increases in white blood cell (WBC) count, 2 to 3 days before a rise in peripheral blood neutrophils, and occurred more frequently with higher dosages. Analgesics may be helpful; however, pain may resolve with continued therapy and generally resolves within a few hours following discontinuation of therapy."

http://www.drugs.com/sfx/neupogen-side-effects.html

It says right there that back pain is a side effect.

The following site has some very interesting statistics abut Neupogen ... note back pain as a side effect and also Hep C is mentioned.

http://www.ehealthme.com/ds/neupogen/back+pain

I really have no idea what to do about pain caused by the drugs, especially if it is from Neupogen. It is not exactly the same as regular back pain from which a person can sometimes get relief from various things, activities, positions, exercises, etc.

I wonder if people on a cancer forum would have any ideas. It might be worth a try to see. If they have a form of cancr that necessitates the use of Neupogen, maybe they have more experience dealing with the side effects of it.

I googled neupogen caused back pain and this site and forum came up.

http://www.cancerforums.net/threads/1298-Severe-pain-with-taxol-and-neupogen

I have had back pain, but it is not Neupogen caused back pain. Mine was usually relieved by lying down. However, mine was position related, especially doing things with my arms in front of me and my back slightly bent (dishes, cooking, preparing food, vacuuming, etc.) and was more muscle pain/spasms. Interestingly enough, that pain is now gone (since Hep C Tx). I believe the pain was caused by the Hep C and now that the Hep C is gone (hopefully) the back pain is gone.

When I have had severe pain, I have used relaxation techniques (I have a tape), biofeedback, hypnosis, exercises, massage, and probably more that I have forgotten. However, this was severe headache type pain and it was not drug induced bone pain. Still, maybe one of them or something like them would help.

I sure wish I knew some remedy for you. I did notice that some of the articles and postings say that the pain lessens after a while, that it is more severe when starting Neupogen. I don't know if this is true of not, but maybe it will lessen or maybe the dose is too high. Your doctor is not helping by denying the pain is from Neupogen. If he/she won't admit it is from Neupogen then he/she is not going to be able to make a correct assessment and determine the appropriate treatment/relief.

Have you considered a pain management clinic. I know this is different from chronic pain, but still they may have some ideas for relief. At least they hopefully will understand better than your doc. Your pain will probably go away after Tx, but in the meantime, maybe they can do something or prescribe something to get you through treatment.

Reva, try to hang in there. I know that is much more difficult to do than to say it. But you have made it this far. You are more than half done now, I believe. And you sure do not want to have to repeat this treatment.

Hoping you find relief.

[willbb]

Neupogen has been proven to be heavily over prescribed to HCV patients doing therapy by many studies done and what the research has revealed

Do you know why you are doing this very strong medication and has the benefits vs. the risks .like any drug prescribed been fully explained to you?

You might be interested in this thread I initiated a number of months ago (below)

Good luck..

Will

http://www.medhelp.org/posts/Hepatitis-C/Some-clarification-if-someone-knows-or-doctor-has-explained/show/1656098?personal_page_id=1837989

[Revalation]

I agree I need a second opionion, My hematologist just retired. He would have been perfect. I really don't understand the position my doctor has
taken as he usually is "right on." His biggest problem is his ego and all he wants to do is Hep C. He's not big on support of associated issues.

Fortunately, my NP is a former oncoloy nurse. I'm pretty sure she's seen this before, but she's not the doctor.

Thanks, for the data. I had knowledge of a good deal of the info and I'm sure this is a reaction to Neupogen. When I was taking only two injections weekly I did not have this problem. When they added  the third dose. The pain began.

I don't want to press my doctor too much or insult him, He runs both a hospital department and a university program. I would not want him to
stop my treatment after 24weeks, I still have 24 more to go. I'll have to tip  toe around his ego to find a solution.

Reva

Reva  

[Revalation]

Well, I did find the pain described by cancer patients who have
to take Neupogen sounds about the same as what I have. They sometimes
have the be treated with strong pain medications to control the pain.

I agree the underlying issue may be a prior back injury, but the pain
is exagerated by the Neupogen. My internest is not going to do a thing.
He dosen't have any knowledge of the treatment of Hep C. He doesn't
want to give me an asprin.

[HectorSF]

It is always best to get a second opinion if you don't trust your doctor9s). Find a doctor that is experienced in treating patients with Neupogen.

Side Effects by Body System - for Healthcare Professionals

Musculoskeletal

'Musculoskeletal symptoms have been the most frequently reported adverse effects of filgrastim therapy. Bone pain has been reported in approximately 22% of patients. Reactivation of pseudogout occurred in a patient receiving chemotherapy. Postmarketing reports have included decreased bone density and osteoporosis in pediatric severe chronic neutropenia (SCN) patients receiving chronic treatment with filgrastim.

Bone pain associated with filgrastim usually has localized in the lower back, posterior iliac crests, and sternum. Bone pain primarily occurred at initiation of therapy due to a transient increases in white blood cell (WBC) count, 2 to 3 days before a rise in peripheral blood neutrophils, and occurred more frequently with higher dosages. Analgesics may be helpful; however, pain may resolve with continued therapy and generally resolves within a few hours following discontinuation of therapy.'

Self-Care Tips:
* Soak in a warm bath to help reduce bone pain.
* Take Tylenol (acetaminophen) to help lower mild fever and reduce pain.

Cheers!
Hector

[Idyllic]

Perhaps contacting your primary care doctor is not a bad idea? Or is your PCP & internist the same person?

In my case I am not sure if Neupogen is the proximate cause of the pain I feel as of late. I feel worse since I started Neupogen however I cannot help but wonder if I somehow inadvertently contributed to the matter. I do a lot of heavy work out doors and I have to admit it has felt incredibly laborious and overwhelming as of late; yet I try to persevere with the same intensity. I am just wondering if I pulled or strained a muscle in my neck or shoulder. (Haven't quite worked that out yet).


Sorry this is happening as I know you have been miserable with this pain lately. I know others have mentioned ideas such as brownies with pot in them and acupuncture and massage (and a good ol' hot bath)  Other then Tylenol I am not sure what to suggest. Ha - I know I was supposed to take my Neupogen shot a few hours ago but I am going to wait until my labs tomorrow....

Keep in me in mind if you stumble across any decent info and I will do the same.
Hang in there.