C. / runny nose, etc.

[Guest guest]

, you said that you have ...

" sinus problems, sneezing, red eyes, post nasal drip, etc. I thought it

must be

allergies. But mine wasn' t the case. ENT told me not allergies do to dose

of pred, but never did tell me what it was. Ear pain, hoarsness and most of

the other symptoms went away when I increased my pred. "

I think runny nose is called rhinitis. It is a classic symptom of other

forms of vasculitis like Wegner's Granulomatosis. Hopefully your ENT will be

willing to look into the possible connection to other vasculitis as well as

how rhinitis may be connected to RP and how it is treated when it is from

that cause.

" Sinus problems " can be caused when sinus cavities become inflammed from RP

per some of my reading. At least one list member has reported that her

sinuses eventually became " ossified " when left untreated because she was

undiagnosed. If your sinus problems show none of the typical symptoms of a

sinus infection (lots of yukky yellow gook and blood when you blow your nose,

pain when you put a hot cloth on your cheeks, maybe headache) you should ask

your ENT if there is evidence of any other kind of inflammation and if you

should use a steroid spray like Flonase or something else.

If it looks like there may really be a sinus infection and you are taking an

immuno-suppressant you should know that the immuno-suppressant can make the

infection a more serious problem. Don't wait to get help if that occurs. A

quick X-ray may be enough to show if there is serious disease (infection) in

the sinuses.

When I had chronic unexplained " sinus problems " an X-ray showed a " cyst " in

one of my sinus cavities but nothing else. Back then no one thought to

biopsy the cyst because it was prior to any RP symptoms. RP can cause

" cysts " and " polyps " in the sinus cavities. They can make you feel stuffy,

too.

The ENT who saw me in hospital during diagnostic testing could not find

anything to biopsy at that time. Don't know what happened to that cyst. He

felt biopsy was needed but without a leision or other significant symptom he

could not do one.

It is possible that X-ray is insufficient and a better imaging proceedure is

needed to see what is really going on. You should also discuss that with the

ENT since you are sort of " at his mercy " -- I think you said you lived very

far from any other doctor. You might consider getting your long-distance

Rheumy's FAX number and send him/

her a note about what is going on and ask if he/she has any suggestions for

your ENT.

In the meantime, if you have the patience to dig for it yourself, you might

search MEDLINE and and the vasculitis sites on the internet to see what you

can find about rhinitis as a symptom of vasculitis and how the diagnosis is

made (CT scan, biopsy or whatever). If you present your doc with that info

maybe he will be willing to do additional diagnostic tests since he says your

symptoms are not allergies.

My pulmonologist was frustrated by the local pathologist's wishy-washy report

on my lung biopsy and sent my slides to Mayo for re-evaluation. Their report

was much more conclusive. Maybe your ENT would consider contacting the Mayo

pathology dept. to find out what kind of slides are needed for vasculitis Dx

and send any slides to them for review/diagnosis if he decides a biopsy is in

order.

Remember, there are quite a few of us listers who have another vasculitis

with RP. Depending on how life-threatening that condition is, it can affect

which meds you take. It is possible you need a different immuno-suppressant

if you are taking one with the pred. -- one that is aimed more directly at

controlling another kind of vasculitis but still works for RP. If you are

not taking an immuno-suppressant, you may need to start or you will never get

RP or any combination of vasculitis conditions into remission. The right

immuno-suppressant will also help you to lower your prednisone dose.

Don't wait too long to look into these other possibilities for your symptoms.

You may learn that they are not significant and no change is needed.

However, if you have to change meds or start a new one it could take up to 90

days before the medicine kicks in and the damage stops.

H.