I am a 24 year old female diagnosed with Sjogren's Syndrome around 3 years ago. Starting in January of 2005 I was diagnosed with Vasculitis. I have not been diagnosed with the specific type of Vasculitis, but my symptoms mostly include: red/purple spots on legs, feet. Welt-like spots on upper thighs. My legs are extremely stiff and painful to the touch. My feet swell soo much I can barely fit in any shoes.

I was put on a course of Prednisone, then Methotrexate. The Methotrexate caused my white blood cell count to go too low and had to be taken off of the Methotrexate. Since being off of the Methotrexate (MTX) I am now having another vasculitis "attack". My rheumatologist put me on a 3 day course of 1g Solumedrol. That seemed to make me feel worse.

If anyone can offer any advice, share your stories, etc. that would be wonderful. I am having a hard time finding any support groups, medical information, anything!

Thanks!

Hi,

I'm sorry to hear of your difficulties. As you found, it is difficult to get much info on vasculitis online. Since vasculitis is often associated or grouped with autoimmune diseases, that is a good place to start. Especially search for lupus, because that is one of the most frequent autoimmune diseases with which vasculitis is often associated. This does not mean you have lupus, of course. Vasculitis can be a primary disease or it can be asssociated with other autoimmune diseases. You can start at the Autoimmune Disease Online site, which gives links to many other similar sites.

I hope you can find some info which will benefit you, and I hope you feel better soon. Like other AI diseases, it can wax and wane, so you may find that you will have a remission of symptoms and be feeling good most of the time. :) I hope so.

Hello,

My husband was diagnosed with Henoch Schonlein Purpura (I posted it on this board--if you want to read it) back in February. After a few weeks of the initial breakout of the purpuric rash, some of the small spots enlarged to baseball size areas on his shins, calves and ankles. As they enlarged, they turned a deep red/purple and formed blisters, which eventually broke open and oozed. The painfulness in the legs lasted for a few weeks. He saw the dermatologist who confirmed through biopsy that it was vasculitis. She said it was the worst case she had ever seen.

I will tell you that we have exasperated the internet, hours spent looking for relief/help. The most help we found was through this board, personal experiences.

Let me tell you what brought some relief to my husband:
1) He alternated tylenol and ibuprofin for the pain relief--they wouldn't give him anything else, which I still don't understand--he was hurting so bad.

2) We used a aluminum sulfate solution recommended by the dermatologist called Domeboro (over the counter). It is in powder form, you add it to water. I would put the water in a bowl and add a couple off packets to it, mix it, soak a washcloths in it, and then lay the cloths on his elevated legs--directly on top of the horrible blisters. I did this 2 times in the evening. He thinks it helped relieve the stinging some.

3) Elevate your feet as much as possible, even while asleep. My husband would put pillows under his feet at night, it helps with the pain some.

4) Wear flip flops during the day if you can. My husband couldn't even fit his feet into socks or shoes. The swelling in the feet lasted 3 weeks and he walked around like a little old man (he's 32). We definitely noticed the swelling went down a little with combination of elevation and flip flops.

I can't imagine the pain you're going through--I tried to imagine it for my husband. I hope something I suggested will help you too. Just try to get rest, limit your activity/walking too.

Hang in there, take care and remember to take one day at a time.

Is your husband in remission?

My Dr adjusted my medication - Prednison and Methotrexate - which seemed to help w/ my outbreaks of the vasculitis. However, even tho there are no spots I still get horrible muscle/tissue pain.

I continue to elevate my feet - and try to rest as much as possible..

I am extremely fatigued tho - Does your husband feel the same way? I feel like I could sleep for 12 hours a day and still be sooooooo tired..

:yawn:

Hi again,

He still has a purpuric rash that breaks out every week--hundreds of little welts all over his body. He'll always have a few on his legs (where the vasculitis was) that get enlarged to about the size of a nickel. Just when we think they might continue to grow even larger (like the ones he had before that turned into vasculitis), they subside. Therefore, we think the run with vasculitis had ended.

When my husband went through those several awful weeks with severe vasculitis, he did have severe exhaustion and fatigue, just like you. He couldn't get enough sleep either, but he still continue to go to work everyday, because he had no alternative. He would tell me that he just didn't feel good in general. As the vasculitis has subsided, the fatigue has gradually gone away.

I'm hoping that your vasculitis will go away soon. It's good that you are trying to rest. Maybe the Prednison and Methotrexate will help you. My husband had a cortizone shot in his rear which was supposed to help with the vasculitis, but he didn't notice a difference.

Take care. :)

For the past 2 years I have been getting those same red spots on my legs. My legs will swell, and they are hot to the touch, and sensitive to the touch. I went to the ER's a family clinic. Then finally I went to a dermatologist. There he did a skin biopsy. It came back as leukocytoclastic vasculitis with mild dermatitis. When I went back he ordered some blood test, urinalysis, stool specimen, and a chest x-ray. I have read about the leukocytoclastic vasculitis and only treatment that they are is the prednisone and the other medication but it is not a currable treatment. Other then those medication there is not treatment that I have read. 50% of all cases with this kind of vasculitis is unknown for the other 50% it is because of something else, like lupus, Sjorgren's disease etc. You can do a search on the internet to get more information. I hope this helps. I think the best thing is go to a dermatologist or a rheumotologist and have them do a skin biopsy. Its expensive but nonpainful.

Good luck

For the past 2 years I have been getting those same red spots on my legs. My legs will swell, and they are hot to the touch, and sensitive to the touch. I went to the ER's a family clinic. Then finally I went to a dermatologist. There he did a skin biopsy. It came back as leukocytoclastic vasculitis with mild dermatitis. When I went back he ordered some blood test, urinalysis, stool specimen, and a chest x-ray. I have read about the leukocytoclastic vasculitis and only treatment that they are is the prednisone and the other medication but it is not a currable treatment. Other then those medication there is not treatment that I have read. 50% of all cases with this kind of vasculitis is unknown for the other 50% it is because of something else, like lupus, Sjorgren's disease etc. You can do a search on the internet to get more information. I hope this helps. I think the best thing is go to a dermatologist or a rheumotologist and have them do a skin biopsy. Its expensive but nonpainful. Oh yeah, do u notice that the rash happens whenever u are standing or sitting for long periods of time.

Good luck

Thanks for the post -

Like I said before - I haven't had a major episode of spots in a couple weeks or so - (knock on wood) - but I still get the muscle pain and fatigue. I am now experiencing joint pain in my hips, knees and elbows.

It seems like its always something going on - I wonder what its like to be "normal" .. :)

Hello,
Just stumbled upon this site and want to introduce myself. My 56 yr. old husband has been hospitalized 2 weeks with severe pain in his extremities, numbness, weakness and swelling. He was just transferred to another hospital b/c he is now so weak he can barely function. His right leg is practically paralysed and we are soooo discouraged.

He was treated for Guillain Barre Syndrome and then that was ruled out when a test came back positive for vasculitis. A nerve and muscle biopsy was done


and those results aren't back yet. He doesn't have the rash you speak about.

How are you doing and does any of this sound familiar?
~Rothsnid

I have had vasculitis since February. I had several blood test with all negative results. Currently I am taking prednisone to suppress the symtoms. During the first couple of months I would have flare ups that would make it difficult to stand. I also had pain in my shoulder. It seemed to favor my left side. I am hopeful that it will go away on it's own; however if it does not I am not sure what to do. The prednisone is very debilitating. It is very frustrating when you have a problem like this and not know why. Good luck with this and keep a positive attitude. Like my Grandmother says, "this too shall pass"

Hi
I also have had vasculitis since Feb 06 and am getting increasingly frustrated. I still have the rash mainly on my legs, and swelling and joint pain in my left leg, mainly knee and ankle. I am find the worst of it is stomach pain and cramping, feeling sick all of the time, and also feeling tired. Some days I feel like I am almost back to normal and then for the next week I feel like I need to just sleep all day. I am still being passed around from Doctor to doctor with no one really knowing what to do, but in the mean time I feel like my life is on hold as I can't function properly.
I have started seeing a natural therapist to see if he can offer any relief, I'll update on that later. Has anyone else with this condition tried anything other than conventional medicine.
Thanks - this notice board really helps - even if it is to just release my frustration.

I too suffer with vasculitis. I have multiple sclerosis. Started a new immunosuppresant when I developed Raynaud's syndrom, that was in Jan. 2006. Now rhuemy says I have Sjogren's syndrom. It is a mess. Need to keep my body temp low because of ms, but need to keep warm because of Raynaud's. Neuro says things just got a little tougher. One toe turned black with an ulcer, it has improved. Thanks for listening.

Hi
I also have had vasculitis since Feb 06 and am getting increasingly frustrated. I still have the rash mainly on my legs, and swelling and joint pain in my left leg, mainly knee and ankle. I am find the worst of it is stomach pain and cramping, feeling sick all of the time, and also feeling tired. .

I think you may have an auto immune problem called "Henoch Schonlein purpura" ,the classic symptoms of which are purpura(vasculitis), knee and joint pain , stomach ache and kidney involvement, all or few of these 4 symptoms may be present. my husband has this problem and I have posted on the auto immune forum

Hello all,

I'm truely sorry you all are going through these situations.

I toobroke out in a rash, about 3 months ago and had a biospy performed. The biopsy came back as early leuko____.. (I apologize don't have the spelling infront of me) vasculitis. My joints were inflamed and i could barely walk. I had most of the rash on my upper thighs but it comes and goes all over my body. I had swollen feet and swollen hands.

At first they thought it was caused by a tick bite and that the vasculits was secondary to the infection. After a month of antibiodics (which was not necessary) an infectious disease doctor told me it was not infectious rather rhuematological. I have now been diagnosed with Undiffentiated Connnective Tissue Disease and have been on Prednisone for a little over a month. I will be starting Plaquenil tomorrow and decreasing the Prednisone. My rhuemy advised me that its not primary vasculits b/c my ANCA tests came back ok. I will be going for a second opinion next week. My hives are still very much active. They calmed down with the Prednisone but I've been decreasing my dosage and i'm getting back to where I started with the swelling, hives and joint pains.

I don't see much on Vasculits on the web, but wonder if infact I have an auto immune disease that is primary, why wouldn't the secondary vasculitis go away??

I found that Aveno anit itch cream relieves the itchyness associated with the rash (early on it was not itchy, later on it was intolerable and had a burning sensation). The only thing is that it goes away pretty quick, so you have to constantly re-apply. I also elevated my feet and felt the swelling went down a lot. I also wore shorts/dress pajamas at home and felt that it felt better than having pants on.

I hope everyone is feeling better these days!

I have had this Vasculitis for a year now. If you are taking Prednisone in 2 or more doses a day find out the best way to taper. I was able to taper off my night dose completely. Currently I am on 2.5 mg down from the 40 mg I was on for a while. I went to Johns Hopkins Vasculitis Center in November and am glad that I did. They were very thorough and good listeners. For the first time I felt like I had doctors that had experience with Vasculits. If anyone needs a second opinion I would highly reccommend visiting them.

For Biopsies: Make sure they test for HSP.

Good Luck and keep a positive attitude.

Hey folks, I'm glad I found this board. I thought I was the only one with these problems. I was diagnosed with vasculitis in March. I had the rash which started on the tops of my feet and spread upward to my chest then my face. It wasn't until I visited a dermatologist and had a biopsy that I found out what was going on. I got set up with a rhuematologist and after 6 weeks of 80 mg of prednisone per day, the swelling has gone away. I have finally been tapered back to 40 mg. How do you all deal with all of the side effects? My face is so swollen that I can barely see my ears, I'm bloated, I haven't slept through the night in months, I get woken up by leg cramps almost every morning, etc... Is there any cure for this? After a dozen blood tests, the rhuematologist couldn't find anything 'wrong'. Will the prednisone become a permanent part of my life? Sorry to ramble, but I had to vent.

hi navysandman
I found out in December that I have vasculitis. It started in September with chest pain and fever. The doctors first said it was bronchitis and then a virus. By the end of October was in the hospital because I was severely swollen and couldn't walk. I had a rash all over my feet and calves that had knots in it. After a biopsy they told me it was vasculitis. I started 10 mg Prednisone in November and it took care of the swelling but I still had alot of pain so my dr. added plaquenil. This helped but I couldn't keep any food down. Turned out the vascultis had caused gastroparesis and I've now lost 35lbs. So i went off the plaquenil and had another bad flare up. After another hospital stay in April they increased my prednisone to 60mg. I have been trying to come off it since. My doctor added methotrexate and i'm now on 15mg of that. The idea was to get me off of the prednisone but I have only been able to get down to 20 before the fever, pain, and rash come back. I went to the Cleveland Clinic in May and may need to go back. The doctor at the clinic said that if the methotrexate works I could take it for a year. At that point I could start to taper off of it and hopefully be in remission. All this to say that you probably won't have to be on the prednisone forever. Actually your dr will probably try to get you off of it as soon as possible. I haven't found any cure for the side-effects of prednisone but benadryl helps a little for the insomnia and restless legs. Hope this has helped.

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

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!

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

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.

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!

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

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

I have Lupus and right now docs are believing I also have Vasculitis. I have gotten the "small red pinpricks" 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 pinprick 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!

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 have Lupus and right now docs are believing I also have Vasculitis. I have gotten the "small red pinpricks" 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 pinprick 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! :o
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

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

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