VASCULITIS

[Guest guest]

This is very painful--it's called nodules. I had them on my scull in the back

and they would also appear on my fingers, elbows, anywhere that you had

contact with something fairly hard. It hurt to sleep on a pillow. This was at

one of the more serious/bad times for me but now several years ago.

<<

I don't know if my finger lesions are what's described here, but the

following, from " Living With Rheumatoid Arthritis " by Tammi L. Sholtzhauer,

M.D. and L. McGuire, M.D., is the only discussion of these strange

" cuts " that I have ever come across:

" Vasculitis (inflammation of blood vessels) is a rare complication of RA

which generally affects individuals who have high levels of rheumatoid

factor in their blood. . .Blood vessels may become inflamed when an

excessive number of antibodies is being produced by the plasma cells in the

blood. The antibodies stick to each other and form complexes, and these

floating immune complexes sometimes deposit themselves on the blood vessel

wall, causing inflammation within the blood vessel and limiting the flow of

blood.

Depending on the size and location of the blood vessels involved,

vasculitis can be a relatively minor problem or a more significant one.

When small blood vessels leading to the skin are involved (particularly the

skin in the lower legs), skin ulcers may develop. Splinterlike lesions

around and under the fingernails may result when small blood vessels in that

area are affected. These ulcers and lesions generally require only

meticulous skin care (in addition to treatment of the underlying arthritis)

to prevent secondary infection of the skin. . . "

???

Kari

>>

[Guest guest]

My dermatologist said my cuts were from psoraisis and my RD also said

psoraisis. My gp at the time gave me cortizone cream but yu could only use

it for a short time because it thinned the skin as it stopped its growing

spurts. Is there a different test for PA and RA because my RD when I saw

him last a year ago, still hadn't decided if I had one or the other. I

have scaley skin on my scalp and behind my ears where your glasses arm rest,

on my forehead and chin and I believe it is psoraisis. I also have the very

dry skin on the elbows.

It just seems to appear then for no apparent reason, then is gone. My

cuts are finally healing. The skin around the one on my forefinger is hard

and course and it doesn't hurt now.

Bev

>

> This is very painful--it's called nodules. I had them on my scull in the

back

> and they would also appear on my fingers, elbows, anywhere that you had

> contact with something fairly hard. It hurt to sleep on a pillow. This was

at

> one of the more serious/bad times for me but now several years ago.

>

>

> <<

> I don't know if my finger lesions are what's described here, but the

> following, from " Living With Rheumatoid Arthritis " by Tammi L.

Sholtzhauer,

> M.D. and L. McGuire, M.D., is the only discussion of these strange

> " cuts " that I have ever come across:

>

> " Vasculitis (inflammation of blood vessels) is a rare complication of RA

> which generally affects individuals who have high levels of rheumatoid

> factor in their blood. . .Blood vessels may become inflamed when an

> excessive number of antibodies is being produced by the plasma cells in

the

> blood. The antibodies stick to each other and form complexes, and these

> floating immune complexes sometimes deposit themselves on the blood

vessel

> wall, causing inflammation within the blood vessel and limiting the flow

of

> blood.

>

> Depending on the size and location of the blood vessels involved,

> vasculitis can be a relatively minor problem or a more significant one.

> When small blood vessels leading to the skin are involved (particularly

the

> skin in the lower legs), skin ulcers may develop. Splinterlike lesions

> around and under the fingernails may result when small blood vessels in

that

> area are affected. These ulcers and lesions generally require only

> meticulous skin care (in addition to treatment of the underlying

arthritis)

> to prevent secondary infection of the skin. . . "

>

> ???

>

> Kari

> >>

>

> ---------------------------

[Guest guest]

In a message dated 7/4/00 1:11:00 AM Pacific Daylight Time,

egroups writes:

<< Subject: Re: Fw: vasculitis may be one of the primary pathophysiologic

mechanisms in Lyme neuroborreliosis. >>

Hi, I have vasculitis. Showed up on brain MRI as lesions. Can't take any of

the antibiotics except penicillin and that's no good for Lyme. Have a CS

generator and am making CS and hoping that it will help. The way I

understand it fibrin is growing on the inside of my blood vessels (horrible

thought) and is why I have these headaches and brain fog. Have just started

chelation treatments, if it will desolve calcium deposits thought it might

help get rid of the fibrin. Am also doing the other natural things for

hypercoagulation such as aspirin and bromelain. Have read that in almost all

chronic diseases the person has thick blood which causes the perfusion

problem which means not enough oxygen to the brain. Have always had trouble

flying and now am beginning to think it is because maybe I'm getting less

oxygen on the plane. Just some thoughts. Regards,

[Guest guest]

Hi Debby! I'm so sorry you are experiencing the pain and

frustration that go along with autoimmune disease.

I for one have had constant tension headaches, 24 hours a day, and

migraines every single day. I was on Imitrex, then because of

vascular problems, Raynaud's, had to stop taking it and boy did I

suffer! The migraine meds constrict the blood vessels, which was

bad for my Raynaud's as I was losing circulation in my fingers and

toes. All they'd give me was pain medication from Vicodin to

Percocet and nothing helped! It was just horrendous. I couldn't do

anything all day except ice my head and lay in bed. Now that my

Raynaud's is a little better controlled, I asked to be put back on

some kind of migraine meds. I've tried Zomig, Maxalt, and they work

wonders. But you have to take them at the first sign of a migraine

coming on, which I can usually tell when I start feeling a stabbing

behind my right eye.

No, this is no fun but I am doing well accepting all that goes along

with it. I started out with just Raynaud's and Lupus and now I also

have Fibromyalgia, Scleroderma and AIH. Right now the AIH is the

worst so I am on Imuran and Prednisone but it's pretty stable.

Recently I've started having pins and needles, numbness in my left

arm which is really bad. I guess it's another visit to the doctor.

Yes, I hate all these tests we have to undergo too!

I hope this helps you. Don't give up. Try to find the meds that

will agree with you and help your symptoms. Take care and God

Bless. Jonell

[Guest guest]

Hi Debby, i just wanted to say i have really bad headaches also. In fact i`ve just had some blood tests done to see if they can find out whats causing them. I am also having alot of sore throats since easter. I`ve had antibiotics for this, but it keeps coming back. I have alot of symptoms that worry me, but don`t know who to turn too. I feel i have other immune disorders, but it took doctors long enough to diagnose me with aih, i`ll probably be waiting a few more years to get my other problems sorted out. Are there tests for other immune disorders like Lupus?

I hope doctors can get you some relief soon. Love jackie

>From: "tdcc"

>Reply- >, >Subject: [ ] Vasculitis >Date: Mon, 9 Sep 2002 18:33:03 -0700 > >Yesterday morning, I woke to a splitting headache. The vomiting was included. I had one like this two weeks ago. Finally, hubby took me to ER and they told me I had a nonspecific migraine headache. They shot me with Demerol and Phenegran. I finally got rid of the pain. It has not come back. > >However, today, I saw the Neurologist and she thinks that if it is not nonspecific migraine, that it could be vasculitis. She said this is another autoimmune disease. She is going to treat me right now with Immetrex pills that disolve on my tongue and phenegran. I will take the meds only if I need them. > >But, she had concerns that this might cause a stroke, although a slight chance. She also suggested that this might be from stopping my hormones the past 2 months...well, actually about 4 months. She said headaches like this can occur from stopping Estrogen. I am not willing to go back on hormones since Estrogen can cause breast cancer, and since Mom just died in March from BC, I don't want to EVEN go there. The doctor supported my decision! > >OK...my question, once we start getting these autoimmune problems, is there ANY way to stop them? I am at my wits end! This is rediculous! > >And, do any of you have vasculitis and do you get horrific headaches? >Debby Join the world’s largest e-mail service with MSN Hotmail. Click Here

[Guest guest]

Jonelle, thank yuou for your response. I looked at the medicine at school today and it is Maltax. The teachers at school didn't know anything about it, so I am thinking that it is new.

Honestly, it is impossible to be sane and have these headaches! Here is to hoping that this is just migraines and not vasculitis. I am not ready for more problems.

As for knowing when I am going to get a headache, that is the problem. When I have gotten them, I wake up vomiting and then the headache is worse than ever. That is how it started two weeks ago, that is how it started Sunday. So, hopefully, the migraines will settle as soon as I take the pill. If not, then I don't know what I am going to do! Well...guess I DO know what I will do....just do it!

However, on the good note, those who spoke to me this morning, told me that their headaches are controlled well by the meds, so that is encouraging!

Debby

[ ] Re: Vasculitis

Hi Debby! I'm so sorry you are experiencing the pain and frustration that go along with autoimmune disease. I for one have had constant tension headaches, 24 hours a day, and migraines every single day. I was on Imitrex, then because of vascular problems, Raynaud's, had to stop taking it and boy did I suffer! The migraine meds constrict the blood vessels, which was bad for my Raynaud's as I was losing circulation in my fingers and toes. All they'd give me was pain medication from Vicodin to Percocet and nothing helped! It was just horrendous. I couldn't do anything all day except ice my head and lay in bed. Now that my Raynaud's is a little better controlled, I asked to be put back on some kind of migraine meds. I've tried Zomig, Maxalt, and they work wonders. But you have to take them at the first sign of a migraine coming on, which I can usually tell when I start feeling a stabbing behind my right eye.No, this is no fun but I am doing well accepting all that goes along with it. I started out with just Raynaud's and Lupus and now I also have Fibromyalgia, Scleroderma and AIH. Right now the AIH is the worst so I am on Imuran and Prednisone but it's pretty stable.Recently I've started having pins and needles, numbness in my left arm which is really bad. I guess it's another visit to the doctor. Yes, I hate all these tests we have to undergo too!I hope this helps you. Don't give up. Try to find the meds that will agree with you and help your symptoms. Take care and God Bless. Jonell

[Guest guest]

:

Thanks for your reply. I am so sorry to hear about your son and his heart

problems, in addition to kawasaki's. That is so awful.

It is just odd with Rob, he is getting all these symptoms, but only on

his lower legs, nowhere else...very odd. We don't go back to the rheumy

until June.

How is your son doing with the taper? I hope that it goes very well...

Thanks for your information.

and Rob 16 Spondy

On Sat, 30 Apr 2005 22:32:27 -0600 " Mertens-Dodgen "

<micmert@...> writes:

My 4 year old was Dx with systemic jra March 1st and one year before had

kawasaki disease (dx 2-20-04) he had dilitation of his Right coronary

artery and was treated with IVIG and continues with a baby aspirin a

day. KD is considered a vasculitis at a micro level.

From what I have been listening to from what others have been discussing.

There seems to be various autoimmune processes going on with these poor

kids.

It will be interesting to see where the genetic research will discover

and possibly lead to a cure.

Joe right now is on his slow prednisone taper and on MTX tab for 9 weeks.

and I can only hope for the best.

Best wishes

, Joe 4 systemic

Vasculitis

Does anybody on this list have a child with any form of JRA who has

vasculitis?

Rob keeps getting these odd rashes, red hot splotches, and sometimes

some

open sores on his lower legs. I'm beginning to think its vasculitis...

and Rob 16 Spondy

-------------------------------------------------------------------------

-----

[Guest guest]

My 4 year old was Dx with systemic jra March 1st and one year before had

kawasaki disease (dx 2-20-04) he had dilitation of his Right coronary artery and

was treated with IVIG and continues with a baby aspirin a day. KD is considered

a vasculitis at a micro level.

From what I have been listening to from what others have been discussing. There

seems to be various autoimmune processes going on with these poor kids.

It will be interesting to see where the genetic research will discover and

possibly lead to a cure.

Joe right now is on his slow prednisone taper and on MTX tab for 9 weeks. and I

can only hope for the best.

Best wishes

, Joe 4 systemic

Vasculitis

Does anybody on this list have a child with any form of JRA who has

vasculitis?

Rob keeps getting these odd rashes, red hot splotches, and sometimes some

open sores on his lower legs. I'm beginning to think its vasculitis...

and Rob 16 Spondy

------------------------------------------------------------------------------

[Guest guest]

-...

Nick had some very strange looking round sores last year that had his

rheumy concerned. She said that they looked suspiciously like

vasculitis, although at the time his blood work didnt come back with

an of the tell tail signs that would indicate that something like

vasculitis was going on. So at that time she was not too concerned,

although im always on the watch for them

I can send you some pictures if you are interested. IM heading to bed

now, I just walked in, but I can forawrd them to you when i get up. I

have to have 15 mins sitting on the laptop to just get my mind off

work and to relax a little.

talk to you later

Helen and (7,systemic)

-- In , H Schulz <snooksmama@j...> wrote:

> Does anybody on this list have a child with any form of JRA who has

> vasculitis?

> Rob keeps getting these odd rashes, red hot splotches, and sometimes

some

> open sores on his lower legs. I'm beginning to think its

vasculitis...

> and Rob 16 Spondy

[Guest guest]

Hi ,

Is his D-Dimer elevated?

Stacia

[Guest guest]

Don't know! Never has had one drawn. He is going to the dermatologist

today (for his acne), but of course, his legs look pretty normal except

for some brown areas where the old small little sores were. I'll ask him,

though...

Good thought!

and Rob 16 Spondy

PS Your friend hasn't called me yet. Any news?

On Wed, 04 May 2005 15:45:51 -0000 " staciar101 " <staciar@...>

writes:

Hi ,

Is his D-Dimer elevated?

Stacia

[Guest guest]

>

> Bee,

> For your information my friend who suffers from the hep c is quite

> encouraged and doing well. Her blood sugar levels have dropped

> considerably since she has started using the coconut oil.

==>That's wonderful to know Pat! Good for your friend!

>

> Your egg drink is amazing. For my friends I have attempted to type

up in a page a breakdown on its ingredients, why it is so amazing.

My efforts at this time are inadaquate. If any one is able it would

be quite appreciated.

==>I'm sorry I do not have the time, but just copying separate

articles from my website on eggs, butter and coconut oil would be

good, and also cinnamon helps stabilize blood sugar.

>

> Anyway my friend has asked me to ask you if you have specific

> information for vasculitis. She has veins in her legs that not

only look horrible but are very painful.

==>My thinking is that the body's cell are not constructed as nature

intended, therefore the vein walls are very weak. The cells need to

be constructed out of 50% saturated fat (the lung cells required

100%). She needs a diet like this one which is high in good fats,

moderate proteins, and low carbs. The body runs so much more

efficiently on good fats rather than carbs, but it does take time to

switch the body over and it takes time for the cells to become

reconstructed. It is also very important that she take the

supplements, particularly omega 3, & vitamins A & D (cod liver oil),

vitamin E, vitamin C (it builds collagen), B vitamins, etc. and that

she cut out all vegetable oils and fats.

The best to you, Bee

[Guest guest]

Is there anyone here that has been diagnosed with vasculitis? My

husband has it, and I have recently been diagnosed with RA. My

rheumatologist tells me that I have probably had RA for at least the

last 10 years. We are wondering if anyone else has had the same thing

happen to them? Thanks, F.

[Guest Lila Beavers]

Debbie, yes I got bad head aches.  My head would get knots on it and hurt all over.  I was recently diagnosed with Rheumatoid Vasculitis. I would break out in a rash on my legs upper torso and on my arms.  It didn't itch though.  I did have digestive issues and I also had problems with getting my bowels to move.  Laxatives  wouldn't even work for me.  My Chiropractor put me on digestive enzymes and they have helped me to digest my food.  He also told me to eat raw fruits and vegetables and cooked vegetables and kraut, dill pickles, and pickled beets.  He told me not to eat any dairy, wheat, and anything with refined sugar or any processed foods.  Since then I am feeling much better.  I pray this might help you in some way.  God Bless.

 

 

Sincerely,

Lila Beavers