update

Hi everybody,

 

Thanks for your prayers last night.  I have been diagnosed with microscopic polyangiitis and will need IV Cytoxan for 1-6 months.  I could have taken it orally but the risk of bladder cancer is 1 in 3.  I still have a risk with the IV, but less.  Once we control this ugly monster, I will probably be on Cellcept for life.  This doesn't confirm or rule out  Lupus, MS or any other autoimmune disease.  They are still shaving off pieces of the nerve they biopsied for testing.  the rheumy is treating me aggressively in case my form of vasculitis is polyarthritis nodosa, or systemic necrotizing vasculitis - but because they can be fatal - I don't want them.

 

As there is no message board for vasculitis, I hope I can continue to come here for some support.  If anyone knows of a vasculitis message board I would love to here about it.  I have seen some messages on the immune board which I will continue to monitor.

 

Anyone who knows of me, knows Ice cream helps all that ails me, so I'm going to the freezer.

 

Take care,

Debbie

Hi Debbie,

I’ll email you a few more links I found, but you might see if the local contact for the Vasculitis Foundation has some vasculitis message board leads. Hang in there, and please keep checking in and letting us know how you are doing. I am dishing out seconds on that ice cream right now…

http://www.vasculitisfoundation.org/support

Sunny

Hi Debbie!

I also wanted to let you know how sorry I am. Make sure you still come to chat as we need you, and I like to discuss books with you. I hope the treatment will not be too bad, and that ice cream helps. I may be starting on imuran or cellcept myself in January. I think imuran is cheaper than cellcept.

Hey Debbie,

Just wanted to chime in too and offer my support. I hope you are feeling better real soon. Hang in ther friend. Please know i am thinking of you.

Love and Prayers

Lynn

Thanks for reaching out, its funny I even saw the post, I have had the vasculitis under control for awhile. Had four of the 6 treatments. They weren't too terrible. I was in bed with mild flu like aches and mild nausea which the doctor had prescribed meds for, but I couldn't eat much of anything. I had baked potatoes and pretzel sticks over those weekends. But hydrated myself like crazy like she said. It was important to flush the bladder so I did. I had a headache with each treatment that got worse each time, so after the fourth treatment I told her I couldn't handle the headache at home if it was going to be worse as I am a single mom. So we tried the oral cytoxan, and I still had bad headaches. but because the inflammation rate came down, which is how they monitored the effect of treatments we decided to stop, and control the symptoms. I am only now coming off prednisone. And as I write this, have had the electrical shock pains in my back, and have bad pains in my calves, my legs gave out this weekend, I could on, but all here understand, so I'm not sure what part of my disease is acting up as I am still not diagnosed with another auto immune disease yet, I am one of those in limbo land, but not feeling good, so it may be the vasculitis again, feels something like it. Hope your friend gets some relief, as for information it is far and few, I never did find much.

Debbie