View Full Version : Ear/Eye Involvement

12-30-2009, 05:35 AM
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?

12-30-2009, 08:13 AM
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.

12-30-2009, 10:21 AM
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.

12-30-2009, 10:39 AM
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.

12-30-2009, 05:11 PM
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.

12-30-2009, 05:17 PM
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.

12-31-2009, 10:08 AM
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.

12-31-2009, 06:28 PM
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.

12-31-2009, 06:39 PM
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

12-31-2009, 06:42 PM
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.

12-31-2009, 06:48 PM
My Rheumy, ENT, Nephrologist, 2 Opthamologists and my GP are all on the same loop and send reports to one another whenever I see them or have blood work done. As long as my Rheumy, ENT, and my GP and Neph know what is going on I feel good. They all get copies of all my blood work, x-rays, ultrasounds, CT-Scans, MRI's, etc.

01-01-2010, 03:46 AM
Jolanta, I've had that problem in the past. When I got rid of my idiot doctors and had good ones all over Arizona, I explained to each of them what it was like for me having no idea of who was in charge, what each one knew, etc.... They each agreed to send each other copies of my clinic notes every time I saw one of them. Even so, I've always had to be the "Keeper of All Knowledge" about my case.

01-01-2010, 05:31 AM
One of the better aspects of our NHS system is that records area centralised in each area and will shortly be available country wide so we don't have to haul our own notes around. Even X rays are now electronic and available on the system.

01-01-2010, 06:11 AM
That sounds nice Jack. It is always a challenge with the doctors....can you get me the results of the lung cat scan... I need to see the bone scan too.... I need this and that and it is overwhelming ... Yikes!

01-01-2010, 07:51 AM
I don't think it hurts to be a nag to your doctors to encourage them to communicate with each other. The way that works for me is I tell Dr. A they need to talk with Dr. B about my response to WG treatment in his care and to ask questions of Dr. B that are specific to his, Dr. A's specialty so that the next appointment we have we can discuss Dr. A's plan for me. Then I "consult" with Dr. B my next appointment (I offset them so I can do this) about: 1. Did Dr. A call/communicate with him, 2. if so, was there anything I needed to know about the conversation for the next appointment with Dr. A, or, 3. if Dr. A hasn't called/communicated with him, is it OK if I have Dr. A call him, Dr. B, the next time I had an appointment with him. I hold doctors to their promises to call, but also make sure the other doctor(s) involved who have a need to know are involved, too. This is where having a doctor's business card is handy. Dr. A is more apt to call Dr. B if he doesn't have to spend a lot of time contacting him, for example, running down a phone number. Suggest > follow up.

01-01-2010, 08:11 AM
I had eye involvement with an optic neuritis in 2007, and the treatment was the same for me. A lot of pred, and immuno suppression. Good luckx

01-01-2010, 06:07 PM
Gwen what were the symptoms of optic neuritis?

01-01-2010, 06:12 PM
Sangy, that is exactly how i feel a keeper of my health. I'm OK with it but feel that there is someting missing, but then maybe I am too demanding, after all I seem to be OK. My rheumy may not be the best but he does smile and seem to be genuinely glad when my results come back and are good. There realy is nothing else anyone can do for me but the treatment I am getting, I guss I just need some hand holding which is lacking in all the docs. I am still on the lookout for a wegs specialist in BC.

01-01-2010, 07:16 PM
Gwen what were the symptoms of optic neuritis?

For me, I just had what I can only describe as a feeling of having a little hair stuck in my left eye, and I just couldn't see 100% . I wasn't particularly concerned, but when I went to my GP, he sent me straight down to the hospital. The hospital consultant then referred me straight on to a Rheumatologist, who has been by my side ever since!

I didn't have any other symptoms, ie. headaches. I was just lucky that I got checked out in time.

01-01-2010, 11:04 PM
Thanks, mine are just bulging out, are a bit blurry and hurt when oressen on. I will see a specialist hopefully soon.

01-02-2010, 04:46 AM
Have you contacted the VF to ask about Wegs docs near you? I'm concerned about your eyes. That could be several different things. Is there any way to see an opthalmologist very soon?

01-02-2010, 05:35 AM
Jolanta, when you say your eye's are bulging out that reminds me of my sister with Grave's disease( hyperthyroidism). Like Sangye said it could be other's stuff related to WG. I second the nagging,go see an eye doctor soon.

01-02-2010, 11:08 AM
I third the nagging. I hope you have a good team of docs out there Jolanta.

01-02-2010, 12:17 PM
Me, too, Jolanta. Nag. Nag. NAG!