My husband's story

[Barbara1966]

I hate it, but helping me to breathe easily and also decreased the coughing, but with every puff feels like I have sand in my mouth and throat, my throat has a tickle like you need to clear that every couple of minutes even after I rinse and brush my teeth. Also my tongue is very tender and numb. I'm using this for last three weeks and the numbness getting better.

[Barbara1966]

Sangye,
They claiming that there are, the prednisone was increased because when we draped to 35 mg a day, I got so bed, I was not able to breath, and hardly walk. This is why my local rhemy send me to Yale. At Yale they switched me to daily cytoxon and increased pred and it is helped. My next visit is on Monday and the prednisone should be decreased.

My case is little complicated because of the TB ( I was vaccinated in Poland for the TB as a child and every test is positive) but finally at Yale they came to one conclusion that I do not have TB. The new pulmonary take his time to listen to me and really review all the slides and x-rays, everything.

Finally they concentrate on Wegs.

[Sangye]

It must be very complicated to have a false positive for TB! TB and Wegs can look very similar on x-ray, as you've learned!

I hope the new treatment continues to work well. Your cough may go away with Wegs treatment. I had a dry cough for a few years, but it seems to have disappeared. It wasn't a big deal, just annoying.

[Doug]

Barbara- In our own ways, we celebrate with you for feeling better, especially for the 15th day! I know the first day I felt good, not just better, was a profound and joyous moment. I have no doubt you will treeasure that special moment you felt that revelation, too!

[mikecaven]

Here is a word of encouragement for your husband and you. I first got Wegeners in 1981 at age 34. It stayed in remission until spring 2007. That was 26 years of remission for me. It came out of remission in '07 and hit my kidneys harder this time...causing anemia. So I went back on 150 mgs of Cytoxan and 60 mgs of Predisone (same as 1981). 3 months ago I came off and now take 6 Methotrexate tablets one night a week along with daily Folic Acid tablet. I am back to my same old self again....feeling normal. Labs are normal (the only issue is my Creatinine level is a little high).

Hopefully this will encourage your husband and you. Mine may come out of remission again...but I will immediately know it when it does. The routine is to have labs every month with monitoring from a Rheumatologist and Nephrologist every 3-5 months. Life's good again. I am now 62, work out daily, play golf weekly, work hard, and feel great. I know how overwhelming it can be...but there is light at the end of the tunnel.

[Sangye]

Mike, I continue to be stunned and thrilled by your case. I hope all Weggies can have an outcome like that!

[elephant]

Mike, I am thrilled and amazed that you were diagnosed correctly in 1981. Were you in Texas or a big teaching hospital? In 1981 I was falling apart and the doctors at Children's Memorial Hospital in Chicago did not have a clue it was Wegeners. They new I had a autoimmune disease, but didn't know what. I was finally diagnosed in 2008! I am glad you are doing great Mike!

[pberggren1]

When I think back when I was diagnosed it is truly amazing. I knew I had some sort of Auto-immune disease and I communicated this to the ER doc who is now my Nephrologist and he came back 15 minutes later with a diagnosis of WG. Sangye, I hope you find more releif soon. And Mike, I am amazed as well and wish you all the best and another 26 years minimum of remission.

[Doug]

I'm from a small community that's 4-1/2 hours or so away from the nearest teaching hospital with a rheumatology department with doctors who have any regular contact with WG patients, yet a Physician's Assistant correctly determined I had an auto-immune disease. Because I had pulmonary issues greater than the kidney issues at that point (though the kidney issues were pretty grim), the PA turned me over to a pulmonologist who comes twice a month to a specialty clinic (it happened I was admitted to the local hospital on a Monday, and the pulmonologist was scheduled for the coming Friday). The PA had ordered several blood and urine tests during the week, including a "stack", I think they called it, which was saving your entire urine output for 24 hours to establish kidney function, perhaps other things. When the pulmonologist arrivewd on Friday, he had had already seen my medical reports up to Thursday, and was able to give a preliminary diagnosis of WG. That Friday, I was sent to the regional hospital with which the pulmonologist is associated, and he had ordered a lung and sinus biopsy as soon as I arrived there. I was in that hospital long enough for them to determine drug therapy (based of what the head of the department of rheumatology advised my pulmoinologist to do in my case) wasn't working: I was losing ground, so they sent me to the university hospital, where rheumatologists guided all the other specialties through a course of treatment that saved my life.

Whew! Having written all that, my point is that getting the right treatment in time seems to be mostly a matter of luck of the draw. I lucked out in that a PA knew when to turn me over to a specialist, who knew when to turn me over to WG specialists. My treatment and recovery to a state of remission was relatively uneventful. The only problem I had was hospital billing departments that coulodn't get it straight that not only did I have insurance, I had the highest level (private room, no expenses after $1250 maximum, and so on) my company had available. They collect all that information at the emergency room door before they even let in, yet, in my case, it seemed they never could communicate that information to the billing department. One time they hit me just as I came back from my third session of dialysis, then plasmapheresis. For those who've been through this, you know you are in a medical state where all you want is to get into bed and sleep! In this case, the nurse was walking with me from a wheelchair to my bed when the lady from the billing department comes asking for my insurance card to settle the matter of whether or nor I had insurance (!~). I was in a hospital gown, of course, and I told her it was in my jacket pocket, in the patient's closet. So I turned to go there to get it, and the next thing, I'm seeing nothing in color. It looked like I was in a blizzard- all white and fuzzy. An hour later, I came to, and was told I had been given a blood transfusion and something else. They'd put me on a blanket, and a blanket over me. The billing department lady had disappeared by then. I hope they gave her hell, but I don't know.

[Sheila Schembri]

Thanks so much for your encouraging words Mike. We had a wonderful Christmas and are feeling very optimistic. Just before Christmas were given the good news that they feel he has been in remission for a year now and hope to decrease his Cyclophosphomide next year at this time. Other than a major nosebleed last night (first one in months and I am sure attributed to stress not at all related to his WG) things are wonderful!