Diagnosis

[Luce]

I know that ANCA isn't reliable for everyone but it does seem to be useful for my doctors. Although they can't explain why mine has shot up as that's usually a reaction to an infection. I personally think it's because they reduced my dose of azathioprine too much and it wasn't controlling the disease activity anymore.

[coffeelover]

This is GOOD to know. Thanks for all your posts. I, like Andrew thought it was just a number that would eventually just go down with meds? Not realizing that it could be totally unrelated to how I may feel or that is could be affected by an infection.
I got three pages of tests back, but do not understand any of it, so when I go to see my rheumy, I will ask her to explain.
I too want to use this as a progression tool when explaining to family and friends. (Oh, how I am sick of explaining!)

Speaking of explaining...just a quick gripe to get this off my chest but the comment I hear from family and friends the most is "well, you have such a good attitude about your illness". This bugs me (rabbit phrase) because they say it like I have a choice.
Ok that is off my chest....feeling better.

By the way....I run a hotel and yesterday I decorated with bunnies.
lisa Coffeelover

[jola57]

Lisa, good thing its Easter
ANCA is an unspecific test by itself and only when paired with others a good indication where one is at. 0 or negative is "normal", too bad this is not a blood test they do automatically with WBC at regular check ups for normal people maybe if cought early we could find out we are sick befor it gets too far.
Mine fluctuates, above 250 it just states greater than 250. At the moment it went up fro 24 to 56, but I was fighting a flu, which came and went gently due to flu shot. I am still waiting for my last results, it seems to get to me later and later.

Luce are you on both cylo and aza? Any side effects from aza. My rheumy will be putting me on aza in June (to take on the last month of and along with chemo). For how long I don't know I guess its better than chemo.

[Luce]

I was on aza until last week when I got moved back on to cyclo. I loved aza so much, no side effects at all for me! The problem I think came when I first switched from 150mg cyclo to 150mg aza because I then became really anaemic. So they reduced my dose of aza to 100mg which I now think was dropped too low, my ANCA shot up and increasing me to 125mg aza wasn't enough to get it back under control.
So now I'm back where I started on 150mg cyclo for at least a month - hopefully I can move back to aza as I have a lot more energy when I'm on that.

[jola57]

Thanks for the info. I'm still on 150 cyclo and 35 pred, aziatropine will be given in June if all goes well. Anemia is dangerous especially for us, so the lowering would make sense. There is just no way to win with this disease, if it's not one it's the other.

[Jack]

There is just no way to win with this disease, if it's not one it's the other.

Have to agree with you there! Just as soon as you get one problem sorted, along comes another. Some symptoms last for years, others only days or months, but they are forever changing.

[andrew]

There is just no way to win with this disease, if it's not one it's the other.

It's like playing 'whack-a-mole' (Whack-A-Mole, Online Fun, Dorney Park)

[Luce]

I forgot to say that you will need to slap the sunscreen on when you start taking azathioprine as it increases your risk of skin cancer. Not cool to be wearing SPF 40 on a cold English February morning but I'd rather that than skin cancer.

Yes, whack-a-mole indeed!

[Doug]

By the way....I run a hotel and yesterday I decorated with bunnies.
lisa Coffeelover

(we would not expect anything less....!)

[Shannon T]

I experieced severe hearing loss and weakness. GP of 30 years sent me for blood tests on 2/25/09 and sent me to ENT on the same day, 2nd opinion ENT on 3/19/09 and Rhuematolist by 3/25/09. On 4/2/09 had a diagnosis. On 60 mg Prednisone and start Cytoxan Monday.

Guess Houston doctors worked well for me. But hearing loss and balance loss are terrifying. If I can't hear and walk I can't work.

Started balance therapy today and stopped taking Meclizine and Diazepam because they made my balance problems even worse.

Hearing not stable so no hearing aids yet.

So much to absorb in one week and had to put my beloved 12 1/2 year old Chocolate Lab, Annie, to sleep this morning, cancer etc.

Appreciate a place to let this out so maybe it will press a little more lightly on my heart.