New Member from Richmond Va.

[jkthomas56]

Hi,

My name is Jeff Thomas and I live in Richmond, Va. I am 55 years old and up until last year I had very few health issues and was fairly active. I became ill in March 2010, and thought it was a cold/upper respiratory infection but it would not go away. I had low grade fevers every night, was extremely tired all the time, lost my appetite (and 30+ lbs.), and developed bad congestion in my nose and eventually lost some hearing in both ears. After seeing every specialist known to man, my ENT recommended a rheumatologist at the Medical College of Virginia. In 5 minutes he said it sounds like Wegeners and he started me up on prednisone and methotrexate. I count myself lucky so far as it appears the disease is only in my upper respiratory tract and the symptoms had all but disappeared by year-end, my hearing even got a little better, though I still need hearing aids.

I started tapering off prednisone, dow to 15mg a day, but in March (something aboout March is not good for me :rolleyes1: ) I got a cold, at least I think it was a cold, and it progressed into sinus pressure and pain, so my GP treated me for a sinus infection. After 3 weeks of antibiotics, and a decline in how I was feeling, I figured it must be Wegeners rearing its ugly head again. This time it feels centered in the ears as my hearing is muffled, though I am not congested. I am also very tired, and when I do move around and try to exercise my muscles get so sore and I have shortness of breathe. I am being tapered down on the prednisone,as my last blood test showed elevated blood sugar, and increasing my methotrexate dosage.

After reading the experiences of others I don't feel so bad, as there are certainly a lot of you that have been through so much more than me. I look forward to reading the posts and finding out more about medications and how others are faring.

Wishing everyone the best,
Jeff

[Jack]

Hi Jeff,
If you are having a Wegener's relapse has your medication been adjusted to try to knock it on the head? I ask because you have not mentioned the reaction of your Rhumy to the problem. Is it also being reflected in your blood test results?

[jkthomas56]

Hi Jack,

My rhumy is planning on upping my methotrexate dosage but he wanted to see my blood work first. I see him on Wednesday so hopefully I will be on my way to putting this to bed for awhile. Strange thing, the only blood test that has been elevated has been my sed rate. Everything else indicative of WG has always been negative. I am having some scar tissue in my left ear removed Friday and they plan to look at it for any evidence of WG.

Jeff

[Sangye]

Jeff, if you're feeling short of breath they need to do a chest x-ray and possibly a CT. You can have lung bleeding and not know it, or you might be having an allergic reaction to mtx. The shortness of breath, fatigue and pain can occur either with Wegs or with a mtx reaction. The allergic reaction causes pneumonitis (inflammation of the lungs). It looks exactly like atypical/viral pneumonia on x-ray. I had it and was misdiagnosed and treated for pneumonia for 3 months. Please call your doc first thing tomorrow and get this checked out properly. S/he should not just raise your mtx.

[Kami]

Hi Jeff, nice to meet you! Welcome to the world of WG. My rhuemy has me do blood work every 8 weeks just to keep an eye on the ANCA and the ESR as well as kidney and liver functions. My ANCA tests have been a very good indicator of how the WG is behaving. I also have lung function tests a couple of times a year to make sure my lung capacity isn't decreasing because of the mtx.

The website can be very helpful, informative, calming, it can be many things, welcome!!
Kami

[jkthomas56]

Hi Kami, it is nice to meet you too. There is so much to learn about WG I am just beginning that journey and reading everyone's stories is very helpful. I have my blood work done about every 8-10 weeks, which is how often I see my rhumey. So far the only tests that have come back above normal is the ESR and now my blood sugar has climbed to over 100, though I think some of that was my sweet tooth. I will ask my rhumey about the lung function tests when I see him Wednesday. I am also having some scar tissue removed from my left middle ear Friday and they will test that for any evidence of WG. Thanks for the warm welcome and will be hearing you online.

Jeff

[pberggren1]

Jeff, I have never heard of scar tissue being removed from the middle ear. Do you have hearing loss? Tell us more about the procedure and why your doc thinks this is the route to take.

[jkthomas56]

Phil,

My ENT, who has several WG patients, wants to clean out the ear since the scar tissue is pushing up against the eardrum and cutting down on what I am able hear. It also is being done to improve the drainage of fluid from my ear as that has been a problem since last year when the tissue became inflamed. He is going to put a tube in also to see if that helps with keeping the middle ear open. The tissue will be examined for signs of WG, which might confirm once and for all that I have WG. My rhumey thinks the procedure is a good idea too.

Last year when I was diagnosed as likely having WG (never have been able to confirm it) the major issue I had first, besides nightly fevers for 4 months, was congestion in the nose which progressed to my ears and resulted in hearing loss. At first they thought it was a glomus tumor but they did an angiogram and figured out it was just inflamed tissue, which we nowbelieve was caused by WG. My left ear lost significant hearing and my right ear lost moderate hearing. After starting on the prednisone/mtx routine in December the hearing in both ears has gradually gotten better. I still need a hearing aid in one ear, but generally do not wear one in my right ear.

Take care and if you have any more questions just let me know.

Jeff

[pberggren1]

Thanks Jeff.

I was also wondering if your eustachian tubes are functioning or not. Have you had a CT or MRI done? Has your ENT ever told you that the eustachian tubes or not functioning?

[jkthomas56]

Phil,

I have had several CT scans and MRI's over the past 8 months and nothing unusual. The ENT thinks the WG is causing inflammation in the tubes causing them to close up some. Visual inspection only shows a little inflammation but they appear to be open.

I remember your post said you had some major hearing loss. How is that progressing? Mine responded well to prednisone and keeps improving gradually.

Best of luck to you,

Jeff

[pberggren1]

I have no hearing left at all. It was the antibiotic Amikaciin that wrecked my auditory nerve.

[jkthomas56]

I am so sorry to hear that Phil. So there is nothing they can do? Why do they use that antibiotic if it can cause that much damage?

[pberggren1]

I am so sorry to hear that Phil. So there is nothing they can do? Why do they use that antibiotic if it can cause that much damage?

Thanks Jeff. Nothing can restore my hearing except God.

The Amikacin was neccessary because of the lung infection. It was the main drug that came up in susceptibility testing. I should be off of it by early June but now the damage is done.