New member and just diagnosed

[Bob65]

Hi, my name is Bob and this is all new and scary to me.
I was diagnosed on Sept 3rd this year after about 3 months of the worse pain I have ever dealt with. I had severe swelling of the hands and feet and I thought my bones were broken. Once I was put on Prednisone, most of the pain and swelling has gone away. I hope I can get some information from the members because I don't mind saying, after reading about WG I'm scared. Thanks Bob

[Sangye]

Hi Bob,
Welcome to the group. Many of us know exactly how that pain is. That was my only symptom for about 8 months, until I developed increasingly severe fatigue and difficulty breathing.

What other drug are you on besides pred? And are you seeing a doc who specializes in Wegs (ie not just a regular rheumy).

[Jack]

Hi Bob,

Let us know all your troubles and we'll do our best to help.

Everyone's experience of Wegener's is different so there is bound to be someone who can empathise with your problems and offer advice. At least you have got past the first hurdle - diagnosis! It often takes some time and is sometimes too late. Your next step must be to make sure you have a medic that knows the disease and preferably specialises in vasculitis. He will be able to give you the correct treatment (very often not an easy task!) and should ensure a good outlook for you.

[Bob65]

I.m only on Prednsone right now, (60mg) and I don't see my doctor again until November so I guess this is it for now. I don't have the swelling and pain anymore so I guess the Prednasone is working. My doctor seems to know what he is doing, he had me diagnosised in just 45 minutes after he saw me. He may be putting me on something else later.

[Doug]

Bob, you also need to read up on WG. Scary as the initial explanation you get from your doctor is, the prognosis can be very good indeed if treated promptly and by doctors with experience treating WG.

http://vasculitisfoundation.com/

VF's a good starting point for learning more about the disease (their FAQ section for newly-diagnosed WG patients is very helpful) and resources available to you. Among the resources is information on doctors and institutions near you (depending on where you live!) where the best care is available.

Mayo Clinic, Johns Hopkins, Cleveland Clinic, and others post accurate, helpful facts on this disease, too. A caveat here: make sure you stay with well-known institutions' websites for information, and use that information as a basis for forming questions specific to your experience with the disease and your treatment when visiting with your doctors during appointments.

Many of us recommend making notes in a notebook about how we feel each day, any new symptoms, drug reactions, doctor's orders, in short, any and everything related to WG and yourself. Unless you have a better memory than me, the written notes prove to be very helpful during doctor's appointments and after.

As noted above, let us know your questions and concerns. Among us there are many answers to your questions.

[Jack]

I'm concerned that you are only on steroids, this was one of the earlier forms of treatment and did not have a good success rate.
I know that I should not try to diagnose and prescribe by internet, but I think you will find that most people on this site started out on much more agressive treatment involving chemo drugs.
Do a bit of research. Read some of the diagnosis stories on these pages and prepare a list of questions for your doctor. A Wegener's flare up can occur very quickly and do permanent damage.

[Sangye]

I agree with Jack. My first doc also dx'ed me right away (ordered an ANCA along with a full rheumy panel), but had no idea how to manage Wegs. There's a big difference.

How was your diagnosis made? What other areas are affected?

[Bob65]

I had many blood test about 41 vials worth including ANCA which was very hight. Along with the severe joint and muscle pain I have inner ear problems PET, nose bleeds, severe sinus headaches, chest pains, and fatique. It seems it changes everyday. Most of the pain except my nose and sinuses is gone for now. I have pressure behind my eyes also that sometimes makes it diffucult to focus my vision quickly. I,m not complaining just saying what my symtoms are. I'm so thankful that the heavy duty pain is behind me. Bob

ps I had a chest X-ray and the doctor said it looked normal.

[Sangye]

Hey, a "textbook" case! Still, some docs might have missed it, so yay for your doc for getting the dx right.

And you don't have to worry about complaining--we know you're not, and even if you want to, this is the place!

Unfortunately a chest x-ray alone will not always show Wegs activity in the lungs. When my lungs were fully hemorrhaging in '06, my x-ray looked suspicious for atypical pneumonia, but no one thought my lungs were filled with blood. And in my current flare my chest x-ray looks normal. A chest CT should be done to check for silent damage, lung nodules, etc.... If you had chest pain, you had lung involvement to some degree and this must be assessed.

Pressure behind the eyes can be due to sinus involvement, but it can also be a result of eye involvement. A CT of sinuses should be done along with the chest. A brain MRI with an orbital study is also in order, to rule out involvement with eyes.

Repeat CT of chest and sinuses would usually be done within several months or sooner if symptoms worsen.

[Dumpy]

Hello Bob,

I to was one of those that had a diagnosis of a auto immune disease called BOOP but it was the wrong diagnosis. I was put on 40 mg pred. and did well for a while and went back to work after being off for 2 months. I felt great but little did I know that a great deal of damage was being done to my lungs and my sinuses from our BFF. After 6 months from the original diag. I went down again for anther 2 months and was finally diag. with WG.
Where I am going with this Bob is Sangye, Doug and all of the rest of us here stongly urge you to be very aggresive with your treatment before damage is done that is not reversible.
Take care of yourself and lets us know how it turns out.