Hypocomplementaemia question

[Guest guest]

Gracious List members,

I would be interested in any members who have been diagnosed

as having Hypocomplementaemia or with experience of facial

swelling (edema?) specific to the face (under chin ears and

lips) or non hereditary angiodema. No closing of throat has

yet been detected - no other body areas of swelling (edema)

are noticed.

I am on a Clinical Trial for PCI-32765 420mg monotherapy and

recently completed Cycle 1 with minor side effects (see

prior posts) feeling great with great response in shrinking

Nodes.

This morning I awoke with a " fat lip " and it was quite

distorted with no associated rash, discoloration or pain per

se but uncomfortable & impairing speech. This is the third

incident in ten days. The first " fat lip " was on 7/28/11 and

confined to just under the center of nostrils and not

actually involving the lip itself. By day's end it had gone

down. Two days later 7/30/11 I awoke to facial swelling of

the ears, pouches above eyes, cheeks, lips and under chin.

True to 's law it happened on a Sat. and the phone was

out of order to boot. By end of next day it was almost

normal and by Mon. the third day it was undetectable. Nodes

are unaffected as far as I can tell by the diffuse swelling

of the facial flesh.

This swelling reaction is A-typical for PCI reactions

reported by patients to my knowledge. I am of the feeling

that this swelling may be linked to the severe reaction I

had to HD-RTX (High Dose Rituxan monotherapy TX) in March of

this year and possibly to the reaction to RF therapy in '09

that sent me into renal failure despite the lack of any of

the current experience of swelling during that time.

Hypocomplementaemia has caught my attention from the medical

abstracts:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1540857/

Immunologist report 04/27/11 was inconclusive but tests

showed: ANA TITER 80 (no ref range given but found paper

listing 32 as upper high) ANA Pattern = Speckled, C1Q

Binding Immune Complex 1.2 ugE/ml Ref Range = 0.0-3.9, C3 =

31 mg/dL Ref Range = 90-180, C4 = 6 mg/dL Ref Range = 10-40,

ANCA Screen = neg., AntiNuclear Antibody Screen = Pos.,

Cryoglobulin = neg., Rheumatoid Factor Screen = <10 IU/ml,

Protein UR =12 mg/dL Ref Range 0-11 (Immunofixation with

antisera to IgG, IgA, IgM, Kappa & Lambda reveals a beta-

gamma migrating paraprotein exhibiting free Kappa

reactivity)., and Creatinine UR = 43 mgf/dL Ref Range

20-300. Urine electrophoresis showed predominately

glomerular proteinuria with band in the beta-gamma region -

I have no clue as to the significance of these tests but

because no one has figured me out yet I put them in this

post for expert input if anyone can shed some light on a

murky problem.

I ponder the cell migration factor in my current phase of TX

as I suspect I am approaching the peak of peripheral blood

numbers as the nodes empty out. Nodes now all but

disappeared but WBC up to 61.1k from 23k at start.

A page of referenced abstract paper contains a photo of a

man with swelling to his face that is more severe than my

current situation but describes my lip with visual accuracy.

I am concerned as today's lip swelling is an escalation from

7/28. I did call OSU and Dr. Byrd has replied to my call by

email, asking for an update on all meds.

This Bear won't stay down - the " Dance " continues - only the

tune has changed.

WWW