new with questions

[sheasheasmom]

Hi all.. I was diagnosed on March 27th after being sick for months. So far only upper respiratory but have permanent severe hearing loss in left ear. I live in Denver area so no specialist but I have asked my rheumatologist for referral to Dr Koening in UT. I am currently frustrated as I seem to keep getting "sick". I was in er for 4 hours yesterday with breathing issues and diagnosed with bronchitis...not sure if that is really what it is...it just feels like wegeners is out of control. I read about trachea stenosis and it scares me. My Dr started me at 40 pred and methotrexate but quickly dropped me to 20 and then I seemed to flare up so he let me go back up to 30 which is where I am now. I am frustrated because my Dr is just guessing and just tells me to go to er or urgent care when I call with symptoms. The inflammation in my sinus and head has been pretty bad. I suspect I keep catching bugs because I was on antibiotics for months including 2 weeks of iv antibiotics after ear surgery in early March... my infectious disease Dr is one who tested me fir wegeners via anca test. Biopsies of ear and sinus didn't come back with anything.


My questions are....could my pred dose be too low or could methotrexate not be enough or am I just impatient. I was off of work for 6 weeks and went back pt 6 weeks ago and I still feel lousy.

Also...any experience with Dr. Koening? What should I expect from a consultation? My local rheumy only wants to see me every 6 weeks...is that enough?

I was a healthy 45 year old until an ear infection a year ago that wouldn't go away....today I feel like I am a really sick person who looks well on the outside. I had ear surgery that may need to be repeated as that I where my wegeners seems to live.

Thank you! Susan

[drz]

Ask for consult with a recognized expert or go to Utah for a consult. Proper treatment is essential to get into remission and can save you lot of worry and frustration. I got a BAHA to repair my hearing loss but now it is called osseo-integrated hearing implement.

[Dirty Don]

Welcome Susan, glad you found this site, a perfect place for your questions and frustrations. I was put on mtx after my first major flare, it took between 4 to 6 mos to become completely effective. I stayed on 40 mg of pred during that time before docs began the tapering process. I'm nearly 2 years down the road and in med remission with thoughts of better. Drz is right in that you need to bypass your current doc for better and, perhaps, more competent help. Keep in mind that your docs are your employees, not deities. Best to you.

[Pete]

Hi Susan,

I second drz's advice about a consult or visiting UT.

My wegs doc at Cleveland Clinic told me that their normal protocol is either cytoxan or rituxin for 4-6 months to knock the disease down. A change to methotrexate or immuran should follow. I was on 100-150 mg/day of ctx and now take 15 mg/week of mtx now.

Your prednisone dosage seems a bit low. At onset, I was on 60 mg/day. I was able to taper completely off it a couple of months ago.

Hope you get to feeling better soon.

[annekat]

Welcome, Susan! Your case sounds a lot like mine with the nasty ear infection, hearing loss, and lots of sinus stuff before you finally got dx'ed. With me, it took Wegs going into my lungs to get a dx, although the dx was through nasal biopsy. When you mentioned the bronchitis-like symptoms, it sort of threw up a red flag, like I wonder if they are checking for lung or bronchial involvement. If you do have that, I'm suspecting you should be on a stronger drug than MTX. I did very well on CTX, it cleared my lungs right up. Of course you haven't said you have lung involvement. But the bronchial stuff scares me a bit. I was also afraid of bronchial or tracheal stenosis after reading about them but haven't ended up with them. Just a continuing cough and sometimes labored breathing from all the junk dripping down from my sinuses and collecting in my bronchial tubes. In any case, I agree that you need a more experienced doctor and I think that getting an appointment with Dr. Koening is a good idea. I've heard good things about him. As for the prednisone dose, since you are newly diagnosed, I think they should be erring on the side of a higher dose, if anything... also the MTX could be too little. Sounds like your doc is just trying things and that's not what you need; also, 6 months sounds like way too long between appts. at this stage. All the more reason to try to get with Dr. Koening. I hope people on here who have seen him will chime in soon! Or maybe someone else in the Denver area has some other ideas about who they see for their Wegs treatment. Good luck, and keep us posted!

[Evie22]

I agree with all the above seem to me that the more experienced Drs. hit WG, as hard as they can in the begining(without killing you) and when its damped down start to taper off the doses, you seem to be on very low doses not sufficent to calm everything down, you need to get on top of this quickly as possible as you are only getting more worn down the longer this go on.

[jane]

Hi Susan, firstly, really sorry to hear your diagnosis but all is not lost. You need to do some internet searches to find a GOOD Wegener's specialist and then move heaven and earth to see them. Mine is 3 hours difficult travelling away and I have been seeing him every 2 months for 15yrs. and he has been well worth it. Don't worry about Tracheal Stenosis...mine got down to the size of a small needle but they managed to dilate it up and although it is a weakness for me I still manage non-aerobic classes at the gym 3 times a week. Your questions about your pred dose etc are really for your consultant to decide and I feel once you have found someone well qualified who you can trust then life will become easier. Also you may find you need to see several different consultants. I go to Addenbrookes Hospital in Cambridge for treatment and I see a vasculitis specialist ( my saviour DR. David Jayne), an ENT specialist, a respiratory specialist and a gastro intestinal specialist. They all liase together and organise when I need to see whom....a huge weight off our minds I can tell you. Next, you are at the start of your treatment so you are going to feel rubbish for a while but eventually the docs will find a treatment that settles you....mine is Rituximab but it doesn't work for everyone. Finally I SO empathise with you about the really sick person looking well on the outside . It's hard when you feel so c**p and yet look fine. Finally, finally.....no-one knew what to do with me when I was first ill, my bloods were ok and my anca was only a trace and I looked as fit as a flea, it was only because of a fluke operation that they discovered my stenosis and then gave me the option of high dose steroids and a tracheostomy nooooo. Fight for your cause and do the research, you will become the 45 yr. old you know and love again, it just might take a bit of time and you may have to make some allowances :).
Cheers Janey

[Alysia]

Hi Susan,
welcome to the forum. it is a good place to be in.
maybe you need more med, like rituxan. I think that if in the beginning you "catch & hit" that WG, then you will sooner get into remission.
when you are searching for the right doc, find yourself one that will be available to you whenever you need, by phone, e-mail, meetings, etc.
good luck !

[mishb]

Hi Susan and welcome.

I was also a reasonably healthy 45 year old when diagnosed with WG.......but become ill some 18 months before hand.

I only started on 20mg of pred and 10mg of MTX but the MTX quickly got put up to 15 and then 20mg and then Plaquenil was also added to the mix.
Three years later I am still on 20mg MTX, 400mg Plaquenil and 3mg Pred........it does get better.

I agree with everyone above.......you need to find a specialist that knows WG and you need to be pro-active with your care.

Best of wishes to you

[sheasheasmom]

Thank you everyone for the feedback. I am in the process of getting referral to specialist Dr Koening in Utah who is nearest to me. I really don't think I have bronchitis...it feels like wegeners to me....just inflamed and my "bad" ear is full of something and I have the added symptom of a little trouble breathing..I am tempted to go up on my pred without telling my rheum as experiment...my voice is raspy and I just feel off and I have finished the antibiotics. I have pushed him about dosage feeling too low before. It is hard to tell difference between an infection and wegeners...I just keep thinking I will wake up "tomorrow" and feel better and then I don't. Frustrating but I know I will figure it out soon..just have to hold on

[annekat]

I'm glad you are getting that referral! You will feel much better once you are dx'ed, if indeed you have WG, and when you begin to feel the effects of the treatment. Personally, I don't think it would hurt to take more pred, though many would not advise going against doctor's orders.