Old post from Hobb for Newbies ( I have her permission)

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From: Hob@...

Date: Thu Aug 24, 2000 2:48 pm

Subject: Newbie basic info and stuff

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Shari,

Welcome to the group. Hope you can get some definitive answers soon.

It sounds like your Rheumy is up to date on vasculitis/RP and is doing what

is necessary to get you diagnosed. I have some comments to make based on my

own experience getting diagnosed. Please don't look at this as something to

fret and worry about. It is only comments about things we have all learned

we should pay attention to -- to be vigilant in order to keep any damage that

RP does at a minimum. Knowledge is power and I am just trying to give you

some basic knowledge from what I have learned while on the list that makes

living with RP a little easier.

A runny nose is called Rhinitis. Chronic Rhinitis is a symptom of some forms

of vasculitis that often appear with RP -- like Wegner's Granulomatosis. It

is often (mis)diagnosed as allergy and will also respond to certain allergy

treatments, in particular if they contain steroids like the nasal spray

FLONASE. If it is severe enough steroid sprays will not stop it from

causing permanent damage to your sinuses. I have not been able to learn if

Rhinitis is also a specific symptom of RP. I know that several list members

have reported allergy-like symptoms.

Inflammation of the sinuses due to RP will sometimes look or feel like a

sinus infection and a secondary infection can result if you are unable to

clear the sinuses. But the stuffiness can simply be from swelling caused by

RP inflammation, too.

I don't know if a CT scan of the sinuses will show whether your " allergies "

are really that or if there is vasculitis-associated inflammation at work.

You should ask the doc about that. One of my early symptoms of vasculitis/RP

was a cyst that developed in one of my sinuses. Another list member reports

a hole inside her nose and yet another says her sinuses are now completely

ossified. The last one was not diagnosed correctly for almost 20 years.

The burning eyes that are often attributed to allergy may also be a symptom

of vasculitis/RP. Or eyes that run excessive tears for a prolonged period.

Since you have already had an eye checkup you should discuss whether you

should have routine exams by the opthamologist every six months. Especially

if you have to start taking prednisone. One of the side effects of prednisone

is to raise eye pressure and that has to be monitored.

There is a red-eye condition called Scleritis that is associated with RP. If

you ever get red eyes, do not delay getting in to see the opthamologist.

Be sure that your Rheumy and all your doctors know that the tissues that

contain Collagen II, not just cartilage, can become inflamed from RP.

Micropolyangiitis (another form of vasculitis that I have along with RP) is

also thought to attack the collagen in small blood vessels, weakening them

and causing them to scar and fail to function as feeders for the organs that

depend on them. Sometimes the vessels are weakened enough that an aneurysm

results. The organs fed by affected vessels may weaken. In my case it caused

my lungs and kidneys to bleed and some ruptured tiny vessels in my brain

caused small brain lesions here and there (not at all serious because most of

the lesions are no more than pin pricks). If a nerve is affected it can

cause neuropathy. Wegner's Granulomatosis also affects blood vessels. RP is

known to attack the Aorta, in particular.

Kidney problems include protein or blood in the urine. With RP that

generally does not occur in mild cases or at the onset of the condition -- it

usually shows up after you've had it for a while (there are exceptions). But

with the other types of vasculitis that can occur with RP, kidney problems

are more common. Even if you have no symptoms at present, your urine should

be monitored regularly to be sure that your kidneys are OK.

I had the red ears in a series of attacks over about 9 months at the same

time that I had a chronic cough from a chronic " tickle " in my throat. I was

given steroid inhalers to help the cough and they DID help reduce the

irritation but did not eliminate the cough. It was not until I coughed

blood that anyone took a chest Xray to find fluid in both lungs. It looked

like pneumonia but it was not -- it was vasculitis.

What I am getting at is that there are some baseline tests that you should

have as a matter of routine. You have had a pulmonary function test but you

might discuss a chest CT scan with your Rheumy. An X-ray will show fluid in

your lungs but it will not show the granuloma characteristic of some forms of

vasculitis. CT scan will.

Difficulty breathing can be because of lung problems but it can also be

because the airways are inflammed. The airways include the Trachea and the

bronchial tubes. I don't know if a broncoscopy will examine the trach also.

I DO know that one list member reported an RP flare as the result of a

broncoscopy. It seems that certain surgeries and other proceedures are apt

to trigger a flare per some reasearch articles out there.

One way we can tell if our airways are obstructed by RP inflammation is by

using a Peak Flow Meter when we are symptomatic (having trouble breathing).

It is a little tube you blow into and it measures how hard you can blow. If

the measured number is below 350-400 it can mean there is something going on

in your airways. The lower the number the more reason for concern. If you

have breathing problems or feel like someone is sitting on you when you are

lying down and there is the slightest weight on your chest (like your own two

hands) ask your doctor about a peak flow meter.

You should also have your hearing tested as a baseline measurement. There is

a lot of Collagen II in the hearing mechanism of the middle ear. With RP you

can be losing your hearing and there will be no pain or other symptoms to

indicate that is happening. A hearing test once a year can put your mind at

ease in that regard. If you should have pain in the middle ear you should

have it tested during that time, too.

You can actually set up a little hearing test for yourself at home. Set a

ticking minute minder or other soft-noise-maker and walk away from it.

Remember how far you could go and still hear it. Do it every so often. If

the hearing distance should decrease, report it at once.

If you ever begin to have brief episodes of vertigo, especially when you are

lying down or sitting still (sort of dizzy light headed-ness or loss of

balance or a room-spinning feeling when you are moving) that is also a

symptom of RP/vasculitis. Do not wait until it happens over and over.

Report it at once. You may need to start taking prednisone or other

anit-inflammatories and keep taking them until you have been at least 90 days

without feeling dizzy at all.

You may have to see an otoneurologist if you get chronic vertigo. If your

Rheumy refers you to any other specialist be sure that he knows it is someone

who has patients with vasculitis (at least Lupus -- another connective dissue

disease) and that he is willing to learn about RP. I have a problem with

one otoneurologist because my RP symptoms are so similar to Meniere's disease

that he tends to offer treatment for that and cannot discuss whether the

particular kind of collagen inflammation that RP causes calls for the same

treatment as the inflammation of vestibular fluids caused by Meniere's.

One sign that ears are being affected by RP -- even when there is no pain --

is not being able to pop them and always feeling as if you are a little

stuffy. There is cartilage on the eustacian tube and if that becomes

inflammed it may block the tube. Some of us also have the feeling of fluid

in our ears from time to time -- maybe actually hear gurgling or there is a

tickle. Reporting that feeling of stuffiness or a tickle like fluid moving

will often result in a doc looking in your ear and saying there is no sign of

fluid and that is that. It is very frustrating. Sometimes Flonase will

eventually open up your stuffy ears so they will pop again.

If you notice a ringing in one or the other ear that becomes fairly regular

when you never noticed anything like it before, that can be a sign that your

hearing is being affected. If the duration of ringing gets longer and

longer or if the pitch of it changes that is another sign.

It is difficult to get anyone to pay attention to RP inner ear symptoms

(especially when there is little or no pain) because there is so little

specific research on RP ear problems because RP is so rare. When the

standard diagnostic methods like looking in the ear for evidence of fluid do

not show anything there is a tendency to assume there is nothing going on.

The standard RP treatment is usually used when a doc is willing to admit you

have something going on in your inner ears -- anti-inflammatories and

immuno-suppressants. Sometimes you can get a doc to pay attention if you can

provide him with some research about your symptoms -- some docs are happy to

get that kind of info and others will get angry if you " try to tell them

their business. "

If the cartilage that supports the vocal cords is affected a hoarse voice can

result -- and may be the only symptom. No pain or other signs of a flare.

If hoarseness persists and gets worse be sure to report it. Some hoarseness

may be caused by acid reflux (GERD) or by post-nasal drip. It would be nice

if that is all it is.

Go to the 's Hopkins University site for vasculitis and explore it

thoroughly. If you have RP or another form of vasculitis everything you

learn there will be good to know. There are color pictures of some of the

symptoms (docs call them clinical manifestations) of RP / vasculitis there.

I have them printed out and carry them with me in my medical info packet to

be sure that I will have some info in case I am away from home and have a

flare of some kind.

http://vasculitis.med.jhu.edu/symptoms.htm

That is the page for the symptoms but there should be a link there to get

back to the home page and explore the site. Otherwise just go to

http://vasculitis.med.jhu.edu

You should consider always carrying a list of your drugs / dose, your

doctor's name, address, phone number, email contact or whatever, the

diagnosis of your problem once you have it and a brief description of

RP/vasculitis as a systemic auto-immune disease with all of the no-nos for

emergency room personnel. Some ER routines are bad for patients with RP,

especially a patient who has a trach or bronch stent -- I wish I could recall

what they are. Your doc should know and some of the list members who have

had to tell ER folks not to do something may also have some advice along

those lines. Once diagnosis is certain you should also be sure that your

medical info is in your car(s) and all adult family members/parents/etc. who

might ever have to help you out will have a copy.

I once had to call on a neighbor to take me to ER with severe vertigo. My

doc alerted his colleague in the ER that I was coming. If I had not called

him first and gotten his help I would have been at the mercy of the ER

personnel. They would have given me some medicine to mask the dizzyness and

stop the nausea and sent me home. My doc admitted me for necessary tests

(MRI and hearing and other tests) because he already knew we were dealing

with vasculitis. I don't know if having medical info with me would have

helped if I'd gone to ER without the doctor's input, but it would at least

have told the ER personnel who to call.

H.