Ear/Eye Involvement

[Brooke]

If somebody has ear or eye involvement - are there different medications or anything different doctors would do as opposed to having wegener's in your sinus, upper airway, lungs, or kidneys?

[Jack]

I would not think so. The affects of Wegener's are very diverse and the main aim of treatment is to knock the disease itself on the head rather than treat individual symptoms. I know it is not quite as simple as that and things such as kidney involvement need particular attention, but most other problems calm down once the disease is under control.
Once the extent of any long term damage becomes apparent, measures can be taken to mitigate the effects.

[Sangye]

Jack's got it right. Wegs treatment isn't symptom-dependent. I would imagine that eye involvement might require stronger treatment, though, only because of the possibility of eye damage.

[elephant]

I would have to agree to both Jack and Sangye statements. If something starts to become worse, my alarm bells go off ( more deaf, severe facial pain, red eyes/swollen...ect) and that's when I call my local Rheumatologist and discuss the situation. I am blessed I have a good local rheumatologist and I see one at Cleveland Clinic too.

[katwoman]

I agree with Jack and Sangye, aim is to knock WG on the head not just on one symptom.

Example during my initial experience with WG I was having cellulitus constantly in the left eye tear duct. The medication of Cytoxan and Pred stayed the same but each time I was put into hospital on high doses of intravenous antibiotics, usually the tear duct would swell so much until it split and i was then taken into surgery to have it cleaned out...this happened a number of times until I got into have a DCR done and then the other eye started and so the same process with eventually have DCR done.

[jola57]

For good or for worse even though my hearing is affected there is nothing they can do, although my eyes seem to be OK, I have blury vision, eye pain, tearing, and bulging out. I have an appointment with eye specialist in March. It's like they think that I am going for a regular eye check up. I will call in the new year for an immediate appointment since my eyes are getting a bit more blury than before.

[Doug]

Everyone highlights one of the worst enemies we weggies encounter: specialists treating the symptom or symptoms most related to their specialty, and complicating the prognosis for the patient dealing with WG, a disease that one source listed 109 individual symptoms of, noting that was not the total!

In the spirit of nagging, all specialists you use need to be in contact with the rheumatologist or whichever weggie specialist you have as your primary doctor, and any treatment you get by other doctors should be filtered through that weggie specialist's plan for your overall treatment.

[jola57]

The crazy thing about canada is that your primary physician is your family doc, so everytime you want to see a specialist it is the family doc that sends you there. So my rheumy talks to my doc via a letter and my doc then calls me and then gets a referal to the next specialist who sees me and writes the report to my family doc wih a copy to the rheumy if my family doc doesn't forget to tell him to give a copy and so on it goes. I am so confused as to who realy knows everything about me, and truly there is no one specialist. I feel totaly adrift. In making the appointments I am turnig into a pushy b***h. I feel comfortable with all my docs and listen to their advice and find that they listen to me as well so for now it works OK. I just wish that when making appointments for me it is explained that no I can't wait the regular 4 months for an appointment because by that time my disease may make me lose my sight.

[pberggren1]

So what if you have to be pushy, its your life we're talking about here.

Like I said in a different post earlier: Maybe I should have pushed harder and got in to see my Rheumy earlier in the month but I had cancelled 2 appointments because of the weather. I guess I could always take the bus.

And again this morning I am so greatful now that when I call my Rheumy and ENT and say that I think I am flaring that it means I need to talk to the doctor now. I am even able to e-mail my Rheumy.

Take care Jolanta,
Phil of the north

[jola57]

I know that if I realy need it I can make the appointments for when I want, but wouldn't it be ideal if all the doc talked to each other or at least were on the same page with our treatments?
I'm glad you got the pred and will see your doc soon.