New from NC, USA

[Rachel]

I am a new member to your forum looking for some answers.

I first showed symptoms of vasculitis about 5 1/2 years ago when I suddenly lost my hearing. My cochlea became inflamed suddenly and no reason could be found. After about 2 weeks, I was completely deaf. I was 31 and had never had problems with my ears other than a few ear infections. I now use a cochlear implant on my left side, but my right cochlea was ossified by the time my insurance agreed to pay for the surgery.

Over the past four years I have dealt with chronic sinus infections that consisted of weeks of a swollen nose (doubled in size) and congestion that could not be controlled. After a few years of this, (infections every 2-3 months) I developed a saddle-nose deformity. I also had sudden fevers every few weeks accompanied with body aches and flu like symptoms. This was a constant over the winter months.

I have had several episodes of costochondritis, pleurisy, and one episode of spinal swelling that I was hospitalized for over a week.

I was first referred to a rheumatologist/immunologist at UNC Chapel Hill about a year ago for a severe case of uveitis that almost caused blindness. I received prednisone shots in my eye once a week for about a month. My new immunologist automatically thought Wegeners when she saw my saddle nose and heard my sinus history, but after negative ANCA tests and no granulomas found in my sinus cavity, she diagnosed me with small vessel vasculitis.

I am currently taking Cellcept 1500 mg twice per day. It took about 8 months to taper my prednisone off. Since tapering the prednisone I have developed arthritis that I have been prescribed plaquenil for.

Wegeners has been on my mind for years, and before I could get anyone to look at me, I thought this may be what I had. My diagnosis feels vague right now and I am very nervous about eventually tapering off cellcept.

I'm frustrated because I stay so tired - I am a high school special needs teacher and have 2 children. My husband is very supportive, but I know I put too much on him. There are days when I come home from work and am in bed asleep by 6 a.m. I am exhausted and confused easily. I think this is mostly because when I lost my hearing, I also began having extreme vestibular problems - my field of vision is always moving - like I am on a boat or I've been spinning around in circles. My hearing is poor with having only one implant; everything takes so much work mentally, that I just stay exhausted.

If anyone knows of other people who have experienced these same issues, or of helpful ideas I could try, please let me know! I'm glad to have found this forum, and I hope to find some answers and contribute as well.

[Jack]

Hi Rachel and welcome to the forum.
All your symptoms sound as if they could be caused by Wegener's and negative results from ANCA test and biopsy do not establish that you do not have it. Diagnosis of Wegener's is a matter of adding probabilities based upon symptoms and is made using the BVAS system. You really need to find yourself a vasculitis specialist in order to get a more positive diagnosis.

The problem with declaring a diagnosis of Wegener's is that the treatment for it carries its own risks so doctors are reluctant to jump in that direction. However, if it remains undiagnosed, it can be fatal. Renal failure is a particular danger and must be checked for since it shows few symptoms.

Hope you are able to find some help soon.
Jack.

[elephant]

Hi Rachel, I live in south carolina and drive to see a Wegener's specialist at the Cleveland Clinic, her name is Dr Langford. She is very good. It think your arthritis symtoms are a reflection of Wegeners being active. I agree with what Jack said. The reason why your tired is that your disease is not controlled. There are others who have experience ear damage that can help you on this forum. I will you well and hope you get to see A Specialist soon.

[Sangye]

Hi Rachel, welcome to the group. I agree with Jack and Elephant that you need to get a vasculitis specialist involved. I'm actually wondering if you have Relapsing Polychondritis instead of Wegs. Two of the classic symptoms are costochondritis and nose swelling, not a part of Wegs. Here (http://www.merck.com/mmhe/sec05/ch068/ch068g.html) is some info on it. You have a number of symptoms that fit that diagnosis better than Wegs. It's imperative that you get the highest quality care for diagnosis as soon as possible. Both Wegs and RP are extremely dangerous conditions to leave untreated.

[JanW]

I agree with all and RP can cause the saddle nose deformity as well -- are they saying that you have some kind of unnamed small cell vasculitis? There are definitely WG specialists at UNC Chapel Hill -- both a young female rheumy who spoke at the Vasculitis Foundation Symposium as well as a nephrologist -- I believe he is of German extraction, so I would be surprised if you could not get some answers there.

[Doug]

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Rachel ~ many questions you have can be answered in the information on this website. Especially in the matter of questions to ask your docotr, this site has a good "starter pack" of questions. The main thing, it will help focus your mind on the sorts of issues that can arise so you are better able to communicate your concerns to your doctor. It will also help you following some of the comments on this website which, necessarily, can get a bit technical.

[eileenv]

Hi Rachel, Sorry to hear that you had such a rough ride with all this, i myself have been on plaquenil and low dose sreroid for over year now while waiting a diagnoses. What i can say is please take note of what the others have said to you and see a vasculitis specialist and get a proper evaluation.

[Rachel]

I actually really like my doctor, but with a few glitches - she's very difficult to get in to see, I always see a student first, and she is 6 hours from home. Once I see her, she is very personable and is always worth the visit. She can anticipate every question/concern/and then some! I guess I'm asking now, is Dr. Dooley in Chapel Hill worth it?

I think more than anything I am looking to meet people who have experienced some of my main issues. Currently I'm having a lot of itching and GI problems from the plaquenil - I know I should stop taking it, but it will be January before I can get in to my doc...I don't want to go the first part of the winter with no arthritis meds.

The Relapsing Polychondritis was one of my first concerns, too. One thing I've learned about my doctor is she is okay with the term "vasculitis" for now and waits to get more specific. So I'm not sure where I actually lie. The cellcept seems to do be doing the trick, so I won't complain.

I've considered another doctor because teaching hospitals, while thorough, are unbelievably busy and it is close to impossible to get an appointment when you really need one. Do you guys have trouble getting in when you need someone? I called last week and the soonest available appointment is January 16.

Thanks for the help!

[Jack]

Rachel, it is not a matter of how nice your doctor is or anything to do with convenience of appointments. Not to beat about the bush, Wegener's is a near 100% fatal disease if not correctly treated! You really do need to make moves towards getting an urgent referral to a specialist.

I am cared for by a major teaching hospital with a specialised vasculitis research unit and I can get in to see a doctor within a few hours if it is urgent and within a week for anything more routine.

[JanW]

My rheumy is at one specialized teaching hospital and my ENT has a practice, but is affiliated with another (many of the hospitals in NYC are affiliated with medical schools), and I would never have to wait more than a day for an emergency appointment. Even on a regular basis they are easy to see.

Jack is right, you need to be at a place with specialists in this disease, and for you, UNC would fit the bill.

[Sangye]

Rachel, I agree with Jack and JanW-- you need to be focusing on how serious these diseases are instead of trying to make your treatment convenient. I wish I could say that more diplomatically! We all go through it in the beginning.

When your only experience with a doc is a non-vasculitis specialist, your doc may look okay. Believe me, if s/he isn't on the phone with vasculitis specialists asking for guidance in your care, you are at risk.

RP has a worse prognosis than Wegs, which is bad enough if undertreated or improperly treated. You need to hit the ground running.

[nebs]

I agree with all and RP can cause the saddle nose deformity as well -- are they saying that you have some kind of unnamed small cell vasculitis? There are definitely WG specialists at UNC Chapel Hill -- both a young female rheumy who spoke at the Vasculitis Foundation Symposium as well as a nephrologist -- I believe he is of German extraction, so I would be surprised if you could not get some answers there.

Do you remember the young rheumatologist's name? We are looking for a specialist in the carolinas.

[JanW]

I'm sorry I don't -- but there are a couple of doctors from NC and specifically UNC on the Vasculitis Foundation's website as specialists. Go here: Front Page | Vasculitis Foundation (http://www.vasculitisfoundation.org)

[elephant]

Hi Nebs, there is no specialist in South Carolina, that is why I drive to Cleveland Clinic. I see a wonderful local doctor in greenville, SC and she highly respects Dr Carol Langford and calls her if I get into trouble!

[Jaha]

Rachel,

Welcome to the forum, and I think you might consider getting a consult with Cleveland Clinic. I am so gratefull to have found the right dx after suffering for so long with WG and being in the 20% of people with the disease that labs didn't show abnormal and still don't. They have a amazing board of doctors that review all the symptoms and come up with the treatment. I was diagnosised by catscans and bioposies. Look forward to hearing more from you.
Jana

[renidrag]

Welcome to the forum Rachael. Please follow the advice of the others on this site. I finally did and am now one of the lucky wegs that is in remission without meds. It can happen. I don't know anything about the other diagnosis but believe me, the people here know what they are talking about.
Dale

[nebs]

Thanks for your input. It sounds like very good advice and I thing he is on the right path.
Nebs



Rachel,

Welcome to the forum, and I think you might consider getting a consult with Cleveland Clinic. I am so gratefull to have found the right dx after suffering for so long with WG and being in the 20% of people with the disease that labs didn't show abnormal and still don't. They have a amazing board of doctors that review all the symptoms and come up with the treatment. I was diagnosised by catscans and bioposies. Look forward to hearing more from you.
Jana

[Sangye]

Dale, I'm so happy to hear you're holding steady in remission. :smile1::thumbsup:

[elephant]

Good to hear your in remission Dale!