Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 I'm sending some copies of Hobbs old posts. Might help the newbies. 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. > --- Quote Link to comment Share on other sites More sharing options...
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