Problems with Neulasta after IVIG and in Ibrutinib

[KevinCLLITP]

Neutrophils dropped over the last couple of months while on IBN so my doctors gave me a shot of Neulasta. I have ended up with weeks or achy bones, problems breathing, enhanced neuropathy and mouth sores, which are like blood blisters. My experience is that I have had lots of side effects from every drug i have taken, so I guess I am predisposed. what have others experienced?

[AussieNeil Partner Administrator]

I've been on a Zarzio (Filgrastim), another G-CSF variant to boost my neutrophil count for nearly 18 months. I've been administering injections between daily and 3 times per week, with absolutely no side effects, for which I'm very thankful. I don't think there would be much likelihood of a difference in side effects from switching to another G-CSF drug, but perhaps someone else may report they benefited from doing so.

According to the insert included with Zarzio, 24% using it report bone pain, usually mild to moderate and more marked at higher doses. It was nearly always controllable by non-narcotic analgesics.

With respect to the side effects you report, the insert advises stopping taking Zarzio and going straight to the hospital if you experience shortness of breath or wheezing, but to just let your doctor know if you have breathlessness, a sore mouth or mouth ulcers and they bother you. I couldn't see any mention of neuropathy.

Hope this helps,

Neil

[PlanetaryKim]

I had problems with neupogen (similar to neulasta) - aching bones and platelets dropped very low.

[DriedSeaweed]

Did it work I hope? If you had that much discomfort...

[KevinCLLITP in reply to DriedSeaweed]

I won’t know for a month when they do my next bloodwork

[DriedSeaweed in reply to KevinCLLITP]

Maybe the discomfort is a good sign your bones are hard at work replenishing neutrophils!

I had neutropenia for a long time but in recent months they put me on cyclosporine A. It has put me into normal range. If you had ITP in the past if neutropenia persists maybe they should see if it is because of autoimmune issues? That is what caused my low ANC.

[Smakwater in reply to KevinCLLITP]

CLLITP,

If your neutrophils dropped to severe (.5), it would seem that your doctor would test efficacy of the G-csf at 28 to 48 hours, especially if you are experiencing significant side affects.

You might consider requesting a blood lab to see where your neutrophils are. It is perfectly acceptable to do so.

JM

[KevinCLLITP in reply to Smakwater]

They dropped to 1.03 and as I have made them aware of the side effects I have heard less and less from them.

[Smakwater in reply to KevinCLLITP]

I would suspect that they would consider 1.03 concerning rather than urgent. Not that 1.03 is a good thing, nor that neutrophil levels alone are the sole consideration, but I believe anything below 1 is where greater concern tends to exponentially warrant action when all other immune influences are adequate.

If they are observing you with an individual holistic objective based on all of your pertinent collective data, then it may just be appropriate to look at your G-csf progress in a month at your scheduled visit.

However if your discomfort continues or increases, you should definitely contact your doctor or nurse.

JM

[Big_Dee in reply to DriedSeaweed]

Hello DriedSeaweed

I had neulasta shot after each of my last 5 rounds of B+R without any side effects and my neutrophil are now within low range. Blessings.

[BeckyLUSA]

I gave a close friend with breast cancer and she said the side effects from her neulasta treatment were worse than any of side effects from her chemo.

BeckyL USA