Monday, June 8, 2009

JUST SAY NO TO IVIG

I decided  about 1 hour before I was due to start the infusion at 8 AM today to say no to IVIG.

All dressed up with nowhere to go.

Woke up upset and nauseous thinking about it.

It was to be used to prevent infections, but despite pneumonia times two before CLL, I've had no major illnesses since.

Admittedly I was on IVIG for about 18 months, but I have had the CLL diagnosis for 45 months. Most of the IVIG I received then was for my low platelets from ITP and it was a matter, not to put too fine a point on it, of life and death.

It is a very expensive pooled blood product, often obtained from paid donors. It is short supplies often.

The risks are potential. Some unknown infectious agent like an undiscovered unmeasured virus or prion is not found and not inactivated in the processing that causes a problem 10 or 20 years from now. It has yet to happen in years of use. And I have already had tons of it when I had ITP. 

The other concern is that it messes up my gentle raw vegan path to a cure with a mega dose of highly processed  IV protein. Now that is a totally wild conjecture, but it feels real. And you thought I was rational, calculating, and decisive. HA HA.

Its benefits are potential too.  Guidelines suggest you need to be getting serious bacterial infections to the tune of at least two a year, before you use this precious resource. Good hand washing and the occasional use of a N95 mask should do the job for me.

I have a friend, a fellow doctor with CLL, whose levels have been lower than mine for years with no issues, so it it not just wishful thinking to hold off.

My plan is to wait and rethink it- there is no urgencies. If my IGG level continues to tumble or more critically,  if I start getting bacterial infections, then I will need to revisit the decision.

But first I will go back to sleep.

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4 Comments:

Blogger Nick Sowers said...

I think we are the most rational following a sleep, as unexplainable as it might seem. I think you made a good choice, though I couldn't really disagree with you either last night when you listed the reasons for it.

June 8, 2009 at 3:01 PM  
Blogger Marcia said...

I'm with you on your decision, Brian. So far the only gammaglobulin I've received was as a "precaution" when I headed to the Philippines as a Peace Corps Volunteer. I sometimes think it might have been something in that dose that triggered CLL 40 years later. No evidence, of course, except my completely healthy 92-year old mother who worries about her children dying before she does...

June 8, 2009 at 11:12 PM  
Anonymous Cathie Nicholl said...

Brian--I've had immunoglobulins as low as yours for years and yet ever since my treatment (RFC in 2002) I've had relatively few infections. Before treatment, they were constant. The fact that I'm retired from teaching may have somethng to do with it. The one time I had immunogloblulin (for low platelets) it made me sick and we stopped after the first infusion.
To wait and see seems like a good plan.

June 10, 2009 at 6:57 PM  
Anonymous Anonymous said...

What is the tipping point for IvIG? I can't remember. In fact, I don't even know my own IGG level.

I have been on the IvIG for about four months after an infection landed me in the hospital.

BTW I don't worry about 20 years from now. I won't be here then.

I used to counsel my mom not to eat hamburger because of the danger of BSE. She laughed and said the latency period was probably longer than her projected lifespan.

I feel the same way.

I do feel that the expense is so high that I feel guilty using it. I should ask my CLL expert doc about it the next time I see him.

June 12, 2009 at 8:39 PM  

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