New to this website

[tomntexas]

I was diagnossed with Wegeners in November, and it has certainly changed my life style. I have been on Cytoxan since November but late yesterday learned from my Oncologist that she doesn't think Cytoxan is working so she is changing my medicine. To what I do not know yet. Is changing your drugs a common or uncommon thing?

[pberggren1]

Welcome to the Forum Tom. Changing meds can be common but is totally an individual thing because no case of Wegs is alike. There will be similarities and you will find many on here that take the same meds as you do, but this is probably due to the fact there are not many med options for us.

[Jack]

It is unusual to be treated by an Oncologist and I would suspect that she is not a specialist in the treatment of Vasculitis. This disease can be very difficult to treat and you really need to be under the care of someone who has treated a very large number of patients with Wegener's especially if you are having difficulties.

This thread may be worth reading - http://www.wegeners-granulomatosis.c...need-know.html

[Palmyra]

Hi TomnTexas,
I agree with Jack...it is highly suspect for an oncologist to be treating Wegener's, and the Newly diagnosed section would be a good read. Where in our fine State do you live? (I am in Dallas). I hope you will share more of your history with us. This is a sharp group, with a lot of collective knowledge/experience. AND I am bored to tears! We have been iced in by the winter storm that has blasted N Texas and the rest of the US. Stay safe out there!

[tomntexas]

I am in San Antoinio. Who is treating your Wegeners? My Oncologist/Hemotologist is basically administering the chemo drug and acting as the lead doctor in my treatment. I also have a kidney specialist, an infectious disease specialist, and a pulminary specialist on board that she consults with.

I will try to keep this short, but after a physical last July, I was having difficulty breathing and went to the pulminary sp. He did what he does and after tests, including a bronscopy (sp?) said I had pneumonia. That went along fine and I was starting to feel better, but once I went off Prednisone within 1 day I was worse. Went to my GP who took blood and called me immediatley to check me into the hospital where I received 4 units of blood, they realized this wasn't pneumonia, and I was there for a week being tested and determined I had Wegeners. The GP brought the kidney guy in and when it was determined I did have Wegeners the kidney guy brought in the Oncologist/Hemotologist.

Obviously more details but that is the key stuff.

They are telling me the creatine level in my blood is the key indicator of whether I am improving or not and will tell them when I am ok.

Is this correct?

Good luck with the ice in Dallas. My 92 year old Dad lives there and can't stand the cold.

[tomntexas]

I went to the new thread Jack posted and see Rheumotologists are who people seem to be using. In my case, the Oncologist, Kidney specialist, and pulminary specialist have and are treating it here in SA. How succesfully guess I will learn

[elephant]

You really need to see a Wegeners specialist real soon. I waited a long time to see one and wished I would of gone sooner. But anyways, when you are new to the disease, you just don't know any better. I go to Cleveland Clinic and looked got her name thru the Vasculits Foundation. Wish you well and we are here to help.

[JanW]

Agree with all that a rheumy should be the lead doc in your case, but more importantly, a vasculitis specialist. This is a very rare disease and its not uncommon to meet rheumys who have never treated a case in their entire lives, or seen it up close despite having a patient load of thousands. An oncologist of course will know how to manage many of the drugs we take, but cannot possibly know the ins and outs of this disease (or any auto immune disorder for that matter) since it is so far from their specialty.

[Sangye]

Hi Tom, welcome to the group. I agree with the others-- gotta get a Wegs specialist overseeing your care. There's no way that an onc/hem would know how to manage Wegs. I saw the chief of hematology at JHU and even he didn't feel confident to oversee my care!

The fact that you needed 4 units of blood tells me they really missed the boat on diagnosing you. That's a LOT of blood. Unless you had acute pulmonary hemorrhage and began coughing up tons of blood, that level of anemia takes awhile to develop. Your bloodwork would have shown it for many weeks.

[Jack]

Creatinine will tell you how well your kidneys are functioning, but has little to do with the activity of the Wegener's. Although there are blood tests that help to monitor this and when all put together can tell quite a lot, no single test will give an answer. Very often the prime indicator is how you feel and what your symptoms are showing, but things here can get complicated with drug side effects in the mix. Perhaps this demonstrates how important it is to be treated by someone with experience.