18th September 2007
[QUOTE=navysandman;3185858]pheonixbarb,
I'm sorry to say that you're way past anything I've experienced. I feel so blessed that I haven't had to contend with ulcers. I've had the purpura almost covering my waist down to my feet along with some on my arms, chest, and back. My body also was swollen to the point it hurt to wear clothes. It's good that I telecommute. I guess you could say my vasculitis is in remission, if that is the correct term. I haven't had an outbreak since April, when I started on prednisone. I had a rheumatologist appt on Tuesday and he dropped me to 10 mg of prednisone every other day. As far as the ulcers, I tried googling for info, but didn't find anything specific, nothing more than 'topical wound care', which tells me to treat it like any other open wound. I also looked up IVIg therapy. Is that a transfusion of immune globulin from a source outside the body? The info I was reading is good for those in the med profession, but not so good for the old sailors. I wish there was more positive info I could tell you, but you seem to be much more knowledgeable and experienced than I am. If we here at the thread don't hear from you in a while, I'll just assume that you went to the hospital and were admitted. I'll say a prayer for you and hope for the best. Keep us posted.
nsm
HELLO, Navy Sand Man,:wave:
Thanks for writing back....it means a lot to me.:angel:
What a whirl wind of misery I have been through and I didn't go to the hospital! What I did is eat pain meds like candy (and was still in pain) and went to my primary doctor and demanded a steroid shot and a script for dilauid for breakthrough pain. Let me explain why I didn't go to the hospital. Last year I had a similar attack and went to the ER and spent 11 days in the hospital. Since I have a little dog that needs me and because of the the expense of kennel I did everything the hospital does and toughed it out at home. For a week I didn't make calls or go online. My housecleaning was let go while I coped through what felt like the end of the road.
My vasculitis followed the nerve paths along the sides and top of my feet - this was the worst pain. I had a couple spots that were small but very deep. I was thinking how can such a little spot cause so much pain?
I remember around three months ago I pulled off my shoe thinking a bee stung my foot.....nothing there, though..hmmm. It was the same spot that gave me the most pain this attack. Also there was another pain on my calf that I was thinking a couple months ago hmmm - did I cut my calf somehow??? - but there wasn't any cut then, just a scrape-like area. So there were warning signs that I will use for the future. I also was prescribed two tubes of bactroban white calcium 2% creme that costs $156.00 for two tubes. I had to pay $40.00 w/ my insurance but it's very important that bacteria doesn't gets in trying to avoid "cellulitis"....which can be lethal. Also "this" low dose antibiotic is effective that I've been taking - Clindamycin 300 mg every 6 hours. Research says that it's good but not to use a topical "antibiotic" creme. There is no way I could lead any sort of a normal life with what I've been going through not even a telecomuting job. What kind of work do you do and do you love your work? Is it your own business? Enquiring minds want to know, he, he.
I hate to say this but you need to be fair warned. I also went through the purpua without ulcers for the first few years and that eventually changed last year. Little did I know the changes ahead of me. I pray that yours does not advance. In other cases it advances to organs such as the kidneys so I am greatful that mine is not in my organ areas except for my liver.
Once I go on the treatment for HepC (mine is a 6 month short Interfuron Riba treatment) it may also be the cure for my vasculitis. My liver is in pretty good shape except for the hepc I got who knows when.
I have just come alive the last 24 hours and doing house work has never been better,:) Yiipee!
I am very interested in researching diet especially candida (yeast) and wheat with vasculitis. Since I'm on the back side of my outbreak my next attack should be about this time next year or maybe sooner.:eek:
There is such a relationship with food and health that I'm wondering if it comes into play w/ autoimmune disorders.
I will keep any info I find posted and let me know how you're coming along, ok?
Your vasculitis buddy here in Phoenix,
Barb
p.s. IvIg....check out Hopkins, Vasculitis foundation...I'll research too. Do you have v good or double insurance??
I'm sorry to say that you're way past anything I've experienced. I feel so blessed that I haven't had to contend with ulcers. I've had the purpura almost covering my waist down to my feet along with some on my arms, chest, and back. My body also was swollen to the point it hurt to wear clothes. It's good that I telecommute. I guess you could say my vasculitis is in remission, if that is the correct term. I haven't had an outbreak since April, when I started on prednisone. I had a rheumatologist appt on Tuesday and he dropped me to 10 mg of prednisone every other day. As far as the ulcers, I tried googling for info, but didn't find anything specific, nothing more than 'topical wound care', which tells me to treat it like any other open wound. I also looked up IVIg therapy. Is that a transfusion of immune globulin from a source outside the body? The info I was reading is good for those in the med profession, but not so good for the old sailors. I wish there was more positive info I could tell you, but you seem to be much more knowledgeable and experienced than I am. If we here at the thread don't hear from you in a while, I'll just assume that you went to the hospital and were admitted. I'll say a prayer for you and hope for the best. Keep us posted.
nsm
HELLO, Navy Sand Man,:wave:
Thanks for writing back....it means a lot to me.:angel:
What a whirl wind of misery I have been through and I didn't go to the hospital! What I did is eat pain meds like candy (and was still in pain) and went to my primary doctor and demanded a steroid shot and a script for dilauid for breakthrough pain. Let me explain why I didn't go to the hospital. Last year I had a similar attack and went to the ER and spent 11 days in the hospital. Since I have a little dog that needs me and because of the the expense of kennel I did everything the hospital does and toughed it out at home. For a week I didn't make calls or go online. My housecleaning was let go while I coped through what felt like the end of the road.
My vasculitis followed the nerve paths along the sides and top of my feet - this was the worst pain. I had a couple spots that were small but very deep. I was thinking how can such a little spot cause so much pain?
I remember around three months ago I pulled off my shoe thinking a bee stung my foot.....nothing there, though..hmmm. It was the same spot that gave me the most pain this attack. Also there was another pain on my calf that I was thinking a couple months ago hmmm - did I cut my calf somehow??? - but there wasn't any cut then, just a scrape-like area. So there were warning signs that I will use for the future. I also was prescribed two tubes of bactroban white calcium 2% creme that costs $156.00 for two tubes. I had to pay $40.00 w/ my insurance but it's very important that bacteria doesn't gets in trying to avoid "cellulitis"....which can be lethal. Also "this" low dose antibiotic is effective that I've been taking - Clindamycin 300 mg every 6 hours. Research says that it's good but not to use a topical "antibiotic" creme. There is no way I could lead any sort of a normal life with what I've been going through not even a telecomuting job. What kind of work do you do and do you love your work? Is it your own business? Enquiring minds want to know, he, he.
I hate to say this but you need to be fair warned. I also went through the purpua without ulcers for the first few years and that eventually changed last year. Little did I know the changes ahead of me. I pray that yours does not advance. In other cases it advances to organs such as the kidneys so I am greatful that mine is not in my organ areas except for my liver.
Once I go on the treatment for HepC (mine is a 6 month short Interfuron Riba treatment) it may also be the cure for my vasculitis. My liver is in pretty good shape except for the hepc I got who knows when.
I have just come alive the last 24 hours and doing house work has never been better,:) Yiipee!
I am very interested in researching diet especially candida (yeast) and wheat with vasculitis. Since I'm on the back side of my outbreak my next attack should be about this time next year or maybe sooner.:eek:
There is such a relationship with food and health that I'm wondering if it comes into play w/ autoimmune disorders.
I will keep any info I find posted and let me know how you're coming along, ok?
Your vasculitis buddy here in Phoenix,
Barb
p.s. IvIg....check out Hopkins, Vasculitis foundation...I'll research too. Do you have v good or double insurance??