Remicade, Rituxan, & Infections

[Guest guest]

In March I managed to make it through my four Rituxan infusions without any

complications. But then I developed a sore throat last week and it began

progressing...

I'm fairly new here and for those of you who don't know me I have several

autoimmune diseases and the Rituxan was given for a type of vasculitis I have.

For vasculitis they use a different protocol, giving 1 infusion a week for 4

weeks, infusing 375mg per mm of body surface area. For most of us (unless our

body surface area is huge) this amounts to less than the 1000mg dose RA patients

receive per infusion but amounts to a little more overall when you add up the

total amount of the 4 infusions.

Anyway... The good news? I got better fast and most of the vasculitis symptoms

started to improve fast. Whew! The not-so-good news? So I got this really bad

sore throat for several days. I just couldn't figure it out as I don't get bad

sore throats like this. Then a nasty cough came on (I tried Mucinex and it

helped, but...). To make a long story short as my sinus cavities (all of them -

including those close to the brain) had been damaged by the vasculitis I began

to recognize all to well that I had a sinus infection in the works.

My docs surmised that presumably the immune suppression from the Rituxan left me

wide open for a nasty sinus infection at the same time that it was gradually

clearing up the remaining inflammatory damage.

So I have to take an IV antibiotic for at least 6 weeks. (As an aside: I learned

yesterday that patients with Lyme Disease are put on IV Rocefen for about 6

wks.)

At first they tried the antibiotic Avolex but since I have had tendon problems

before from Quinolones & by the 3rd day was experiencing tendon problems again

(could only hobble as my ankles hurt so much). Now they switched it to Rocefen.

Not only do I have no side effects but Rocefen appears to be acting faster than

Avolex. The IV's are being done at home, thank goodness, and we are all hoping

that this will work with just regular IV's and no PICC line. Although my veins

are almost impossible by now after my very long journey with autoimmune disease

(26.5 years) & being stuck a million times I have not yet had to suffer through

any kind of PICC line or central catheter - even during chemo.

I saw that one or more of you had to postpone your Remicade/Rituxan therapy due

to infection. How long do you have to wait once the infection has cleared before

you can begin the infusions?

How many of you have had infections once receiving one or more of these drugs?

Anybody have to be on 6 or more wks of IV antibiotics? Anybody else with

bacterial sinusitus? Has anyone had fungal sinusitus? If so, how in the world

did they detect it? I would like to hear more experiences from others as to what

kind of infections, when they hit (during infusions, 4 wks after, 3 months

after,etc?), how it was treated, and how long it took for you to get better. Did

6 wks of IV antibiotics completely cure anyone's sinus infections? My

ENT says this is way serious and I'm kinda' nervous.

This is my first time on Rituxan and I really wasn't prepared for complications

— actually I was but I didn't think it would happen to me

Anyway, when I saw all the " sore throat " headings I thought I would add my story

for entertainment value or something. At this point I sincerely hope that y'all

are getting better, that the medicines are working, & that life is treating you

well. Autoimmune disease (especially systemic kind) is a real drag & I think we

all need to scream for more $$$ for research & other help (like a little

R-E-S-P-E-C-T!).

When I go to my rheumatology dept I get treated like a mildly annoying patient,

as if I were in the way of the staff's truly important activities or was a

misbehaving child having appeared to stubbornly sit at the adult's dinner table.

On the contrary when I was wheeled across the street to the comprehensive cancer

center to get my Rituxan the attitudes were completely different & remained so

at every visit. Everyone was extremely nice, treated me like I was actually

important, and made a big deal to let me know my treatment & well-being were

their big concern.(Just speculating but does anyone else ever think that just

maybe the rheumy's get just as frustrated in treating AI disease day-in and

day-out as WE get in having it?) Anybody else experience stuff like this? Ah

well, we can't have everything...

Best to all,

Maggie Leigh