Questions

[carrottop50]

I would say this is the site to ask a few questions. I know I am not as sick as most of you are or you have been but I don't want to go there.
1. My family keeps telling I am going deaf. My ears feel as if they are full of water or just plain plug feeling along with tinnitus. So the best doc for this is? I am thinking Ear Nose and Throat specialist. Would they know if this is caused by wegener's? If it is wegener's can they stop the hearing loss at this point or could treatment make it even better?

2. My sinus is so very painful, full of pressure and so very dry at one time and then the next time my nose is draining. Is there something OTC that would help this. I use a Bipap machine which I am having a very hard time using because of the way my sinus hurt. It seems they are worse if it is cold.

3. My brain seems to work some days and other days not so good... is this another symptom of wegener's?

4. Does wegener's affect the eyes too?

5. I feel as if I am going to be heading back to all my old specialist again to see if I can get this under control.
An ophthalmologist, pulmonologist, cardiologist, Ear, Nose Throat specialist and Nephrologist .... now is there another doctor that can handle all of this or do all of you see all of these specialists???

6. Have any of you had a Staph Infection? I seen some where that a staph infection might be what could cause me to have wegener's. I know when I go into the hospital I always get tested for staph infection to see if it is active. They tell me I will be a carrier the rest of my life. The bad thing is I got the staph infection from the hospital in the first place.

[Dirty Don]

1. My family keeps telling I am going deaf. My ears feel as if they are full of water or just plain plug feeling along with tinnitus. So the best doc for this is? I am thinking Ear Nose and Throat specialist. Would they know if this is caused by wegener's? If it is wegener's can they stop the hearing loss at this point or could treatment make it even better?
- Deafness/aural damage can be a result of WG activity. Following WG drug protocols has helped some regain hearing.

2. My sinus is so very painful, full of pressure and so very dry at one time and then the next time my nose is draining. Is there something OTC that would help this. I use a Bipap machine which I am having a very hard time using because of the way my sinus hurt. It seems they are worse if it is cold.
- my rheumy recommended running a humidifier, especially at nite, to ease the symptoms...it helped.

3. My brain seems to work some days and other days not so good... is this another symptom of wegener's?
- not so much WG as the drugs one takes...but a flare of WG can make one disoriented...I passed out and awoke 10 days later! LOL!

4. Does wegener's affect the eyes too?
- yes, usually called scleritis...there are many eye problems such as stuck ducts, etc.

5. I feel as if I am going to be heading back to all my old specialist again to see if I can get this under control.
An ophthalmologist, pulmonologist, cardiologist, Ear, Nose Throat specialist and Nephrologist .... now is there another doctor that can handle all of this or do all of you see all of these specialists???
- I don't see a Rheumatologist on your list. Some hospital/clinics familiar with the treatment of WG will put together teams for the patient headed by one of the above.

6. Have any of you had a Staph Infection? I seen some where that a staph infection might be what could cause me to have wegener's. I know when I go into the hospital I always get tested for staph infection to see if it is active. They tell me I will be a carrier the rest of my life. The bad thing is I got the staph infection from the hospital in the first place.
- No, there is no proof it comes from staph infections though a solid infection can/has initiated flares - no one really knows where WG comes from at this point, but having a proclivity toward staph infections could kill a WG patient.

Hang tough, get the right help!

[mrtmeo]

An opthomalogist can determine if whatever is going on in your eye is autoimmune or not.
Also, a nephrologist can check your kidney function to see if anything is going on or not.
If the kidneys are having a problem, the nephrologist can do a biopsy to find out if it is vasculitis and is quite accurate.
Blood tests by your primary can indicate inflammation or can check ANCA antibodies.

[carrottop50]

I do have lots of inflammation but I also have Rheumatoid Arthritis. My kidneys are at stage 3 so my nephrologist has stated it. Would he do a biopsy because of stage 3. Sorry for so many questions... I know nothing about any of this.

[annekat]

If you have RA, I'd think you'd be seeing a rheumatologist for that, and most people with WG have rheumatologists, since it is an autoimmune condition as RA also is. The trick would be finding a rheumy that knows enough about WG to treat it competently along with the treatment for RA. And I don't just mean the meds, which could even be the same for both diseases, but having an overview of the disease, recognizing the symptoms and patterns of getting better and relapsing. And knowing the peculiarities and capricious nature of WG. Many rheumies deal mainly with arthritis and have little or no experience with WG.

[Pete]

For your sinuses, you may want to use a neti-pot for daily saline rinsing. These are OTC and can be found at most drug stores. They help keep the sinuses clean and moist.

[annekat]

For your sinuses, you may want to use a neti-pot for daily saline rinsing. These are OTC and can be found at most drug stores. They help keep the sinuses clean and moist. Yes, either a neti pot, or another irrigation method such as the NeilMed sinus rinse kit, which is probably the most popular method on here. Some even use a Water Pik with a special nasal attachment. Whatever your method, sinus rinsing is really very important and will give you a lot of relief if done diligently every day. Some of us, including me, do the rinse several times in one sitting, to soften and dislodge the hardened or clumped mucus in there. You may be amazed at what comes out, and when it does, you will know it is helping.

[me2]

Some great ideas so far. I might add a nuance to one of Don's answers. He is spot on that staph does not cause WG but has been implicated in relapse. So, in that sense , if you already HAVE WG- staph can cause WG.

It is very common for WG patients to have staph colonized in the sinus. This causes sinus pain and drainage and blockage and other problems. For this reason my ENT has had me be quite agressive with irrigations of mupirocin (anti-biotic) and budesonide (steroid) .

I believe he is correct that not only does this help my sinus to be more healthy but also it reduces my chance of relapse by getting rid of the staph colony.

All in all, if you have been diagnosed with WG, the group of symptoms you have listed looks like active WG. What treatment are you on? I hope it is not just steroids as just steroids will not make you better.

[mrtmeo]

Hi me2,
If you have ever had a fluoroquinolone antibiotic, you may have MRSA (Methicillin-resistant Staphylococcus aureus) colonized in your nostrils.
My mom had this, but I got rid of it using a special solution of iodine in a neti pot.
Her WBC dropped from 10,000 all the way down to 6,000 after clearing it in less than a week.

[drz]

When I had scleritis before my Wegs was diagnosed the doctor told me it might related to a systemic disorder or not since half the time it happens for other reasons. He did treat it though successfully and i had no loss of vision. Lab work can be very suggestive but a postive biopsy is considered absolute confirmation for Wegs. But some people are diagnosed with Wegs without this due to their symptoms and the ruling out of other possible causes for symptoms.


An opthomalogist can determine if whatever is going on in your eye is autoimmune or not.
Also, a nephrologist can check your kidney function to see if anything is going on or not.
If the kidneys are having a problem, the nephrologist can do a biopsy to find out if it is vasculitis and is quite accurate.
Blood tests by your primary can indicate inflammation or can check ANCA antibodies.

[Sangye]

5. I feel as if I am going to be heading back to all my old specialist again to see if I can get this under control.
An ophthalmologist, pulmonologist, cardiologist, Ear, Nose Throat specialist and Nephrologist .... now is there another doctor that can handle all of this or do all of you see all of these specialists???


I'm a bit confused. Have you been diagnosed with Wegs already? If so, you need to be under the care of a rheumatologist, as they'd be the one overseeing all your care and referring you to other specialists as needed. If you do have Wegs it's very important that your rheumy is a Wegs specialist, even if that means traveling. It's a serious, tricky and rare disease that cannot be properly treated by regular rheumys.