any body know about vasculiteis??

[ROLA]

Hi ...
it's me again:rotfl:
i miss u all realy....i feel comfortable when i'm here sharing our pain ..&hope!
let me remind you about me...
since 3 years..i'm back & forth to the doc...cause i've (vasculities)in my leg:(
do you know what vasculities is ??
it's looks like (prauses)or let me say red small spot in my leg !!
it's realy ugly so that i cant wear any short skirt now:(
i've been dignosed with lupus scince 2 monthes......
but my doc told me this (vasculiteis)is just a symptom of lupos...& no spicial med. for it!!
he just gave me aspirin & plaquinil for it ...he said he is not sure if this ugly spot are going to disapear or not!
i'm asking if any body of you have the same problem ...&what is his med for it??
:p
thank you for your time :hehe:

[Lily]

Hi Rola :)

Vasculitis covers a lot of ailments (from skin in some to blood vessels in the brain at the serious end of the scale). So its different for everyone.

If it just skin involvement then your doc is right, there are no special meds and the Plaquenil should help it to get better. Have you been on the Plaquenil long, it can take months to help in some cases?

Vasculitis of the skin is quite common with Lupus. What it means is the tiny blood vessels nearest the surface of the skin are inflamed.

It's important to report any new symptoms to your doc if you think its getting worse though, like if you have severe pain in your leg or lots of bruising and sore spots. That may mean it is involving medium sized blood vessels which is a bit more serious and may mean stronger medication.

Its also important to reduce sun exposure and when you do go out make sure you wear sunscreen and cover up exposed areas and wear a hat. Often a lot of our symptoms of Lupus are made worse with sun exposure. And they arent always things you can see either.

love
Lily

[Mootie]

Hi Rola,

I have urticarial vasculitis and I am on the same drugs as you, plaquenil etc. I have bruises everywhere and I get the little red dots around my mouth etc. I have pain when I lay down and I am worse in the morning, my legs just ache.

I posted an item here called coffee and vasculitis, you may want to read the replies as it might help you.

Vasculitis can not be cured but it can be controlled. When I get bad attacks I go on short couses of cortisone.

Sorry that you have to give up your short skirts, I am grieving about giving up coffee :sad: at least we can share our feelings with the group and they understand.


Regards

Mootie

[ROLA]

Hi lily:)
i'm realy scared of this vasculities:( it's gonna kill me if it's apear in my face!!
ohhhhhhh god!
mmm....i'm not sure if its only skin issue or not...but i have been to blood vessel spicialist ...he told me there are nothing wrong with the main blood vessel..(which is his major)so that i should visit dermatologist...:(
any way ...i dont feel any pain on my leg write now...(i'm on blaquinil since 2 monthes now)do u think i have'nt been on it long yet??
do think this vasculities will disapear one day??

thank you sooooo much for the useful information:)



Hi mootie:)
i'm realy happy that i've found somebody sharing with me the same feeling:)
can i ask you how did it start with you ??
since what you have been on blquinil?
why it's started in your face??tell me you story pls...i want to know every thing about it ...
do you think this is not going to disapear ?oh ...i dont want to see my leg like this :(
do you know ??every single day i look at my leg 100 time aday to see if it's started to disapear or not!!
to chick if there is more of it!!
i have ( fobia) now ...
chicking my body every day ...every hour....:(
feeling ugly ...
sad ...
actualy i have'nt read your post about coffee yet ..dont tell me i should give up coffee!! i'm coffee addicted:(
i will search your post ...
i apreciate your reply ...and your time ...hope you very helthy life with NO VACULITIS :)

Regards
Rola

[jlp369]

Rola,

I too have vasculitus. The palms of my hands were covered with red dots (kind of like measal looking). Then I too started getting them on my legs! Well, I guess I have to learn how to "Not sweat the small stuff" No matter how ugly the small stuff may be considering that my hair is falling out by the handful everyday! I have always loved my BIG OLE TEXAS HAIR! The good thing is that these outbreaks do not scar once they go away. I am now taking Chemo for the vasculitus since I have it on the skin and in the blood vessels. Actually, I had to have a sero-nerve biopsy (remove a nerve from the back of my leg close to my ankle) in order to find Vasculitus. It never showed up in blood tests. Maybe they can diagnosis it by just a blood test??? Not sure. So I have inflammation in the blood vessles (oh and I have antiphospholipid antibody syndrome which means that I have blood clotting disorder). I was taking Imuran for vasculitus which is also chemo but pill form for 6 months but not relief. So the Cytoxin chemo treatment has begun 1 down and 5 more months to go. Honestly, the red blotches/dots really scared me and they looked really bad. I couldn't do anything with my hands without being in pain. Just the little things hurt like brushing my teeth or stirring my coffee.....oops sorry......water! Hang in there.

[lupie98]

I had the measle looking sores all over my feet and legs. My rheumi sent me to get a test where they stuck a tube from my heart to my leg to see if it was affecting my heart. It wasn't but my dr. put me on high doses of pred to get rid of it. I also had it in my brain which I was hospitilized for. I had really big doses of pred and immuran.
It can take up to 6 months for plaquenel to get in your system. It is an anti-malaria drug but the side effects from it is what helps the lupus. It depends on each person to how long it takes. My dr. thought it was causing me to itch so she had me stop it. Oh no I got right back on it as I was miserable without it. It was not causing me to itch.

[Lily]

Hi again Rola,

If you went to a vascular doc and he doesnt think its affecting more than your skin then thats very good! So try not to worry.

Plaquenil is a good drug for getting the lupus, particulary skin and joint problems under control. 2 months is not really enough time for it to work.

It can take anywhere between 3 and 9 months most of us have found. But you will see more improvement as the months go by.

Was it a Rheumatologist who put you on the Plaquenil? Do you have regular check-ups with the Rheumatologist?

As long as you tell them what is happening to you in between your appointments then they can work out if Plaquenil is enough for you and you just have to be patient for it to work. Or whether you may need to add another drug to it which will help more.

sending hugs,

love
Lily

[Mootie]

Hi Rola,

All of the replies to your post have given you lots of info about the variations and types of vasculitis.

It took the plaquenil about 6 months to work for me. It is a wonderful drug and has changed my life after 10 years of misery. I am sure plaquenil will be your God send too, goodluck to you.

Have a lovely day.

Mootie

[ROLA]

HI every body..
i have read your replies...it's realy helpful..&scary at the same time !
i have anti phospholipid antibodies also ..:(
my Rheumatologist put me on plaquenil & aspirin ..
i'm scared that this ugly thing goes in anther places ...:(
do you know ? since i have had vasculities i'm looking for some body else who has the same problem.....on the street ... on the markets ..in my family & all the people ! no body have any spot in his body but me! i thought i'm the only one in the world !
thnk you very much for your help ...& info .

[shelley_belly1111]

Hey your not alone, I have those terrible spots too. I had a bad flare up all arcorss my whole chest area. Blistering mess. I hope you feel better knowing you are not alone, it is scary I know email me if you want to talk

Shelley

[Joandublin]

Hi Shelly:)

Welcome to the Forum.

Luv n stuff
Joan:rose:

[prpleflwr]

Hello everyone,
I'm kind of new here, as I was reading all of your posts, I believe I might have the same thing, I have those spots also on both of my feet and ankles and now my daughter is telling me that she sees the same spots on my bank all along my spine. When I went to my Rheumo and asked him about it and telling him that my feet hurts when I walk, especially on the sides of the outside of my feet, he told me that it was my blood vessels that popped. Nothing else was done about it. Now I don't have that full confidence in that kind of an answer, now that I have read all these posts about the dots. Do you think maybe that is what my problem is??

Nilsa

[ROLA]

Hi shelly:)
welcome to the forum ....:)
thank you soo much for your feelin s... i'll send you e-mail hope you be my friend :)


HI girls ....i'll tell you my feelings today ....
i'm depressed...and very sad ..all the time (i used to be active & funny girl) but not any more !
im thinking of the worst thing going to happen to me:(
terrfied of being sick & ugly ...
thinking all the time about my kids ...and my future...
i don't feel i'm normal ...oh god ............i feel i'm 50 years older!
this effects my whole life ....i quit meeting my friends ...calling them ..
i'm just thinking ,,,,
sory to tell you that ...but this is who i'm now:(