Newly diagnosed in WA

[Keli]

I was pleased to have found a forum for Wegener's. I was diagnosed 2 weeks ago after being sent home from the ER multiple times with a bottle of percocet for pain and an allergy medication. Being only 33 and sure of my own immortality, the dx was a tough one for me. I have poured over literature and websites and never found what I was looking for.

My story begins in June with a runny nose and a sore wrist or knee every now and then. Then one morning I woke up and could barely move. All of my joints just seemed to have frozen in place. But I kept going, thinking I was too young to be having any real problems and it would just go away. Then in August I rolled off my couch and could barely stand. I got in my car drove to the ER and thought I was going to die on the way through the parking lot just walking into the ER. (I honestly called the Ambulance Guys from the parking lot to help me the rest of the way) The blood tests come back intially with a diagnosis of RA but it was changed when my ANCA came back positive. The initial symptoms were nodules, runny nose, joint pain, anemia (requiring a blood transfusion), blood shot eyes (i scared small children lol) and blood in my ears. My symptoms were never all put together, but I am glad to finally have a name to this.

However, I am still very confused. Being so very new to all of this I still don't know what to expect. I have since been hospitalized 2 times in the last month and just recently was released after receiving 3 days of 500mg IV methylprednisone. I know I have been lucky to have a rheumatologist that is quick with treatment. I am currently on 60 mg pred, cellebrex and oddly a prenatal vitamin. I just like to be prepared. Just from reading through these forums, I know you will all be a lot of help.

[Geoff]

Hi Keli,
Welcome to this excellent website. Fellow Weggies will step up and give you detailed medical advice about your treatment requirements, for myself, I would suggest that you keep a diary of what is ailing you on a daily basis. WG can, in my experience, cause all sorts of syptoms from the top of your head to the soles of your feet so dont hesitate to jot it down. I found it very useful when seeing the experts. Like you I had joint pain and anemia as well as other stuff.

[Sangye]

Hi Kelli, welcome to the group! I'm glad you found us--lots of good info and experience here that will help you. What is your treatment plan? Prednisone alone is not sufficient to get active Wegs under control. They have to add an immunosuppressant.

This thread has info especially for you: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

[elephant]

Hi Kelli, Glad you made it to the forum. I agree with Sangye, you need more than prednisone to get this disease in control. The other medicines the Wegeners specialist use are; cellcept, imuran, methotrexate....if you get really bad they use cytoxan or RTX.
Keep us posted!

[JanW]

Hi, Kelli --

I will add to what Sangye says by saying that it sounds as though the cellebrex is in response to joint pain, but going on immunosuppressive therapy is not only necessary to fight this disease, but will eventually rid you of much of that pain. Please follow the link Sangye suggests and pop in any time with questions!

[jola57]

Hi Keli and welcome. I too am ssurprised that you are not on an immunosuppressant. But you are not the first on the forum where only prednisone is used. I would ask your rheumy why you are not given an immunosuppressant when your diagnosis is Wegeners.

[drz]

Hi Kelli, Glad you made it to the forum. I agree with Sangye, you need more than prednisone to get this disease in control. The other medicines the Wegeners specialist use are; cellcept, imuran, methotrexate....if you get really bad they use cytoxan or RTX.
Keep us posted!

I think most people start with Cytoxan or Rituxan. While some of us may have had a bad case, i think for many it is just standard conservative treatment approach and wouldn't want some new person to get the impression that they have a really bad case just cause doctor started them on Rituxan or Cytoxan. Sorry for contrary opinion and don't wish to upset anyone. Just want to help any new person maintain a positive outlook on their treatment.

[elephant]

No problem for the contrary opimion....I guess I was thinking about what my Rheumy's told me...that if I got worse ( coughing up blood, severe shortness of breath, multiple nodules, kidney failure) that I would be put on RTX. I had this disease for over 30 years....I am a great example of someone who lived a positve life.

[Keli]

I welcome all opinions... makes me think and helps me ask the right questions when I get with the doctor. She has mentioned methotrexate before. I have an appointment on the Thursday with my Rheumy and my first with the pulmonolo....well the lung guy. so we will see how it goes. Thanks for all the help!!!!

[Sangye]

The BVAS (http://vasculitis.med.jhu.edu/research/bvasform.html) is a tool that the Wegs docs use to evaluate Wegs activity. Anything labeled as "major" involvement warrants ctx (or rtx), according to the JHU guidelines (http://vasculitis.med.jhu.edu/research/bvas.html). I thought it was interesting that scleritis or sensorineural deafness are considered major. Someone with that involvement might not feel that sick and might not think they have severe disease.

[pberggren1]

The BVAS (http://vasculitis.med.jhu.edu/research/bvasform.html) is a tool that the Wegs docs use to evaluate Wegs activity. Anything labeled as "major" involvement warrants ctx (or rtx), according to the JHU guidelines (http://vasculitis.med.jhu.edu/research/bvas.html). I thought it was interesting that scleritis or sensorineural deafness are considered major. Someone with that involvement might not feel that sick and might not think they have severe disease.

I find that strange as well Sangye that sensorineural deafness are considered major.

[JanW]

I don't know, as someone who has neither, I would think that potentially losing your sight or hearing is pretty serious. Not as serious as other life threatening things that can happen with WG, but that's huge.

[Sangye]

That's just it-- they have it in the category with life-threatening things like alveolar hemorrhage, stroke, kidney failure, etc....

[JanW]

I guess that I look at it like paralysis -- not immediately (or necessarily ever, I suppose) life threatening but a serious and permanent life altering event. I would put stenosis in that category (don't know if BVAS does or not), and it's not immediately, only eventually, life threatening, and sometimes not even then.