Hello!

[Guest guest]

Hello Everyone,

Sorry I haven't posted again---haven't been on the computer much

thanks to my hands hurting.

Thanks to & Boo especially for their answers about the Prosorba

Column treatments. I am scared to do it,even more so after hearing

your tale, Boo! The insertion of the chest catheter scares me

almost as much as the treatment itself. I have heard one other

horror story which also involved the cath---someone on another site

said they got a bad infection around the catheter and had to have it

removed and go into the hospital for IV antibiotics for a few days

(which also messed up the Prosorba schedule) Yuk! Boo,do you mind

telling me some more about the catheter so I know what to expect?

You can email me privately if you'd rather not share with the

group. I want to know how much of it sticks out, is it easy to care

for between treatments, can I shower, swim? Etc.... Will it show

under my clothes? Some of my worries may be insane but I honestly

have no idea what to expect----I've always just had traditionl IV

needle insertion for Remicade and surgeries.

I have been on both Remicade & Humira, both with very good initial

results in treating my pain & inflammation. My big problem seems to

be allergic type reactions to both----I got severe headaches that

put me in the bed for days and sometimes I was very nauseous

(probably from the intense head pain) The theory goes that I was

have extremely severe congestion headaches as an allegic reaction

but antihistimines and other drugs didn't ease the bad headaches.

Some days I thought I was losing my mind because the headaches were

so bad and they didn't even respond to pain meds like Vicodin,

Lortab, etc.

Also I am a patient who experiences " dosage creep " badly....a drug

seems to work for me for a while and then my body just quits

responding. We increased the Remicade dosage when this first

happened, but to no avail after a couple of months. And when the

Humira quit working well, I had to weigh the pros and cons of bad

headaches. The headaches might have been worth it if the medicine

had helped my RA more. Ah,the choices we arthritics face! LOL.

Seems I am always choosing the lesser of two evils, esp in the area

of meds.

So that's my story with the newest meds and the reason I am looking

into Prosorba.

I need to shut up as this post is getting long,but I will mention

that I am 36 and was diagnosed with JRA at age 3 so I am truly an

old pro at this fight. I am partially wheelchair bound---depends on

how active my inflammation is. I also have iritis in my left eye

which started 5 yrs ago and that's been a major battle in and of

itself! It's horrible! Anyone else on board who has iritis? I'd

love to hear about treatments you may know about.

I've had a wrist fusion and four finger joint replacements. Also a

synovectomy (sp?) on my knee earlier this month and which

precipitated this latest bad flare up.

Before I sign off, Becky, how are the Humira shots coming along? I

know exactly what you mean about the pain not being the needle

itself. Seems the " stick " was the easiest part,eh?

Hope everyone is having a relatively good day.

Donna