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Old 08-01-2007, 11:46 PM   #16
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ayla24 HB User
Re: Vasculitis

hello, it has been so great to read all of the stories on this site.
i recently, 3 weeks ago actually broke out in a horrible rash all over my legs, i went to the ER and they couldn't figure out what it is. the doctors were very sympathetic and kind, but they told me that when rashes come into the ER it's very hard for them to help because rashes (except of course obvious hives, allergic reactions and things like chickenpox are all very easy to diagnose and treat) are hard to pinpoint and identify. most of the time they send patients home with little or no treatment, "unidentified rash."
anyway, since that night i've seen 19 doctors in ER, internal medicine, dermatology, and rheumatology.
the dermatologist did a skin biopsy, and we're still awaiting results.
however the rheumatologist said my rash is classic HSP vasculitis. from what i've read there are more symptoms which i dont have like stomach and kidney issues. i've done 4 seperate urine tests and they've taken so much blood and done so many tests, everything came back normal. (still waiting on biopsy)
this all just happened so fast.

the rash starts with bright red little dots that are raised off the skin. if i didn't have so many i would swear that they were chigger or bug bites.
then they start to get really big and red, thats when they burn the most. and then it's like that for about 2 days, the red lesions start to get so big they cover big portions of skin. and then they turn purple-ish and are really
tender.


i've had horrible joint pain and swelling in the lower extremities, walking has been limited and painful. for about 3 days i could even think about moving my legs it the pain was so great.

****Aveeno oatmeal bath is great for the inflammation. my doctor actually gave me a prescription for it so i could use my insurance to pay for it, it's kinda pricey OTC. Use lukewarm water, my rash just gets angry when the water is too hot. the water feels good for sore muscles and joints and the oat helps alot, its naturally cleansing so you don't need to wash with regular soap.

i've been taking prednisone, but i hate the way it makes me feel.

docs also said that OTC ibuprofen is good for the pain and swelling. 3 200mg, every 3 hours.

i hope this will help, i know what you're going through.
-ayla

 
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Old 08-06-2007, 12:44 AM   #17
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sujkap HB User
Re: Vasculitis

ayla,

HSP symptoms could vary. Leg and joint pains are one of the relating symptoms to the purpura on lower extremities, ie: legs. My husband age:39 had symptoms since 2005, on and off prednisone ,but now on methotrexate 12.5mg weekly since October2006. (and may have to continue this medicine for 2years more)The first episode had purpura and joint pain. later episodes had purpura and stomach ache. Platelets are normal.
We are still looking to see the end of this problem!

 
Old 08-22-2007, 05:05 PM   #18
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phoenixbarb HB User
Re: Vasculitis

HELLO>>> fellow Vasculitisers. I been diagnosed with vasculitis about five years now and I feel like I'm an old pro at how to live "better" with it. My MD's will no longer treat me with steroids because of the long term dis-benefits from them. Like most of you, I am also constantly searching for more information on what works and if there's anything new that I need to hear about. Not much has changed over the years and I get any where between 3 & 7 flare-up/attacks in one year. This is what I've learned that works for me and I'm actively doing the following:
My doctor prescribes strong pain meds and I willingly take them. If your doctor won't prescribe them for you then find a doctor with a warm, empathetic heart and a wise disposition that will. Most people would not know that I have a walking disability because the pain is maneageable while taking the meds. The only way people would think something is wrong with me is by looking at my feet. It's big, 'ol slippers. The days of regular shoes are gone and have not been back to my lovely shoes since my diagnosis.
I try to keep my digestive tract and colon clean during an attack. I take Lactulose solution 10g/15 ml. three tea spoons a day. Eat more fruit and vegetables high in antioxidents and less red meat during this time.
I had my oxygen levels checked and mine was right on the fence at 89 so my insurance pays for Oxygen. I have a machine and long tubing that I use during the night and sometimes during the day like right now while surfing the net. The O2 helps in cleaning the blood and is good all the way around. Research shows Oxygen helps ward off cancer too.
I suffer with severe pain...stabbing, piercing, burning, traveling to name a few and found infra red heat to help with pain. A bulb is less than $10.00 at the pharmacy for an "all you need primative method"....and that's all I need along with the right type of lamp to put the bulb in. A rocker arm lamp is very inexpensive and can be bought at an office supplies store. Infared heat has recently been approved by the FDA in America. It aides in circulation which is one of the problems in vasculitis.
Yes, standing and sitting make the swelling and pain worse so lie down w/ propped-up legas as much as possible. If you have a job like I did, that you have to do one or the other....please by all means apply for long term disability, NOW. Unfortunally, Vasculitis doesn't go away and in some cases gets worse.
Smoking will aggravate the various symptoms and will kick your pain up.
The one thing I did that has the biggest positive effect is buy myself compression knee high socks. TRUST ME, they work. Most pairs have been $50.00 to $80.00 but they now have competion in this explosive market and Osco's Health Aides Pharmacy carries a couple good brands for $24.00. You will be amazed at how you get "instant relief" from them.
I hope to hear from all of you that are suffering and hope that my experiences can truly help you. Please send a thread through if you know of anything that you believe helps with living with Vasculitis. Since it's not going anywhere soon I best guess we learn how to better live with it, don't you think?
Say NO to Steroids!
Phoenixbarb

 
Old 08-24-2007, 06:48 AM   #19
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navysandman HB User
Re: Vasculitis

sujkap and phoenixbarb,
Thanks for the words from an experienced sufferers. I have been concerned about the side effects of prednisone for some time now. Although since my last post I am down to 20mg every other day, I still have many side effects. Fortunately the increased appetite is gone as is the extreme irritability I had. The wife and I were discussing our plan in case of recurrence and we decided prednisone is out. Any ideas for a non-steroidal med? I saw from Sujkap's post that her husband takes methotrexate. I'll have to look that up.
Is this condition hereditary or is it contracted in some way? Is it just me or is there not a lot of info on this subject? The best site I've found so far is the Johns Hopkins site.

 
Old 08-28-2007, 03:41 PM   #20
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phoenixbarb HB User
Re: Vasculitis

HELLO Navy Sandman,
I glad you wrote back. I've been suffering with the worst flare/up attack EVER and my daily routine is way off kilter. I haven't even gone to my PC in days now and opened it up today to find you....so HI again!
Have you bought the compression stockings yet? My new insurance pays for two pairs a year I just found out.The pharmacy worker or the doc needs to measure your legs. Go out and get at least one pair and wash them daily in cold water and air dry....wear over and over...even sleep with them. I prefer black because they look like regular socks and are less noticeable. The blood in your legs/feet is better circulated to your heart with these "amazing" stockings.
Navy SM, some researchers believe there is a biological link while others believe it is hormornal, etc....they don't know. It is readily admitted in the AMA community that MD's, emergency rooms etc. don't know much about this disease and you may find yourself telling the doctor more they know. Why oh why....it's hard to believe....you shake your head in disbelief.... just educate yourself as much as possible and print info and take it to your primary so they refer you to the right specialist.
There is so much to learn and two types of vasculits or mixed...mine is mixed. Have you had any ulcers meaning blisters open up? You want to avoid this at all costs...meaning ****** V.Ulcers and V.Ulcer photos so you know what they are about. Smoking is the biggest risk factor and some researchers believe Buerger's disease is caused from smoking.
NSM, I wish the docs would give me steroids because they work well for auto immunitory diseases but they won't and they are right. I have found that my vasculitis is related to Rheumatoid Arthritis that showed up in a blood test. You want to find out what yours is in relation to ...because it doesn't stand alone. Maybe start there and see what you can come up with and know you've got some new buddies over here. It has a horrific impact on ones emotional well being and interpersonal relationships. I'm here and many others so please stay in touch! Let's help each other live better while living with this.
Barb in (hell on earth 110 degrees today) Phoenix
PS...There's SO MUCH info on the subject....yikes!

 
Old 08-30-2007, 09:45 PM   #21
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phoenixbarb HB User
Re: Vasculitis

Hello...I would like to hear from my fellow vasculiters about a couple key issues. I'm going through my worst ~flare-up~ ever and am considering going to the hospital. The reasons are because I'm confused on what the right process is in keeping the ulcers on my legs clean. From what I've researched the right method is for the first two weeks in a flare-up, keep the ulcers moderately moist without anti-bacterial topical ointments. From my understanding it's best to stay away from them all together. Does this sound right? I've applied honey for my dressing because it's supposed to have some good properties while keeping the ulcers moist and I have it right here on hand.
This is the big one for me, guys. I am frightened....I live alone therefore I haven't anyone to debride the vasculitis ulcers for me and I have a little dog that needs me to look out for him. If I didn't have my min pin (King) I would of gone to the hospital by now. The last major flare-up ended up being an 11 day hospital stay -no joke.
The pain is overwhelming and I'm taking strong pain meds. The main reason my docs won't have me on a steroid treatment is because they can cause vascular necrosis....meaning they may interfere with the body's ability to breakdown fatty substances that build up and clog the blood vessels causing them to narrow...resulting less blood to the bone and it feels like vasculitis is starting to affect the bones in my feet. In the hospital last time, they use a short IV steroid treatment.
Oh, Navy Sandman have you heard of IVIg therapy? My insurance doesn't cover it but from my findings there is a 80% recovery rate of pain and muscle strength. It stands for Intravenous Immunoglobulin Therapy. Also when I said there is two forms I meant to say the two are Venous and Arterial and some people have both that is called mixed. Under the two are all different kinds of vasculitis from my understanding. Mine is called cryoglobulemia and vasculitic peripheral neuropathy.
What is everyone using for a dressing??
I hope to hear from ya's!
Phoenixbarb

 
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Old 08-31-2007, 10:42 AM   #22
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navysandman HB User
Re: Vasculitis

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

 
Old 09-08-2007, 01:45 AM   #23
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emcreative HB User
Re: Vasculitis

I have Lupus and right now docs are believing I also have Vasculitis. I have gotten the "small red pin*****s" rash on my arms for a while now (a few times a year of the past two years). It seemed sun aggravated at the time...my skin would get hot, itch, and then there were spots.

This time is different. I do have an area on my shoulderblade (which was not sun exposed) larger than a silver dollar with the red pin***** rash. There are a few elsewhere but no big deal.

However, this time, I presented with a lump in my chest after a three week flare. It was tender to the touch. Within two days I had two more. In a week, I was up to at least 10. You can't see them on the outside (with the exception of two that made my skin bruise from the inside-out) but you can easily feel them. I don't know how many I have anymore. As I said, they are tender. I'm also having some problems with nausea and, of course, fatigue and pain.

I was put on a course of steriods and will continue with 10mg a day until I see my Rheumy. I have had both a mammogram and an ultrasound, and nothing was "red flag" enough for them to send a report right to my doc. They are still working on the diagnosis of Vasculitis at this time.

Has anyone else had this kind of Vasculitis? Seems most are mentioning sores and rashes, but no one with "tumor like lumps." I am having a very difficult time finding anything out.

Any advice would be appreciated. Thanks!

 
Old 09-18-2007, 06:58 PM   #24
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phoenixbarb HB User
Smile Re: Vasculitis

Quote:
Originally Posted by navysandman View Post
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,
Thanks for writing back....it means a lot to me.
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.
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??

 
Old 09-18-2007, 07:18 PM   #25
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phoenixbarb HB User
Re: Vasculitis

Quote:
Originally Posted by emcreative View Post
I have Lupus and right now docs are believing I also have Vasculitis. I have gotten the "small red pin*****s" rash on my arms for a while now (a few times a year of the past two years). It seemed sun aggravated at the time...my skin would get hot, itch, and then there were spots.

This time is different. I do have an area on my shoulderblade (which was not sun exposed) larger than a silver dollar with the red pin***** rash. There are a few elsewhere but no big deal.

However, this time, I presented with a lump in my chest after a three week flare. It was tender to the touch. Within two days I had two more. In a week, I was up to at least 10. You can't see them on the outside (with the exception of two that made my skin bruise from the inside-out) but you can easily feel them. I don't know how many I have anymore. As I said, they are tender. I'm also having some problems with nausea and, of course, fatigue and pain.

I was put on a course of steriods and will continue with 10mg a day until I see my Rheumy. I have had both a mammogram and an ultrasound, and nothing was "red flag" enough for them to send a report right to my doc. They are still working on the diagnosis of Vasculitis at this time.

Has anyone else had this kind of Vasculitis? Seems most are mentioning sores and rashes, but no one with "tumor like lumps." I am having a very difficult time finding anything out.

Any advice would be appreciated. Thanks!
Hello,
Bless your heart!
I know that the ER - sucks big time when it comes to autoimmune disorders but you want advice so here's what I would do.
I would search engine for hospitals in your area and go to the ER of the best fit hospital for autoimmune disorders even if it's a bit of distance. You can get a good ER doc that will know just like that or they might have to put you through some tests. The size of your tumor-type skin disorder bothers me especially on your chest. Any time there are unknown changes with your body, please get yourself checked out and demand answers! Also, arm yourself with knowledge and the ER docs are more apt to strive harder for answers. They won't let you go until they give you a diagnosis. More can get done in a 12 hour ER session than weeks with your roomy.
Take good care and let us know how you are coming along, sweetie.
Phoenixbarb

Last edited by phoenixbarb; 09-18-2007 at 07:27 PM. Reason: more unfo used ****** word for verb

 
Old 09-19-2007, 06:41 AM   #26
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navysandman HB User
Re: Vasculitis

Hey Phoenix!
Good to see you back on the board. I'm glad to know things are a bit better for you. Pretty gutsy riding it out at home, but your reasoning is sound. Thanks for the warning about the ulcers coming later. Naturally, I'm not looking forward to them and I hope they never arrive. I am concerned that the stuff may be coming back, though. My knees and ankles have been very sore lately, to the point that climbing the stairs is painful. The last flare up I had was preceded by the knee and ankle pain. Not really pain, but a soreness/stiffness. Either the stuff is coming back or a couple of years of driving a desk for a living is finally getting to me.
I'll be in your neighborhood in a few days. I'm going to SD on business and have a layover in your town. I'll wave and look for you. You'd better wave back.
nsm

 
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Old 10-10-2007, 02:58 PM   #27
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navysandman HB User
Re: Vasculitis

Hey PhoenixB and others,
I went to see my Rheumy yesterday and he has taken me off prednisone completely now. Yay! Now it is just a waiting game to find out when this stuff will be back for an encore performance. Hopefully it won't be anytime in the near future.
nsm

 
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