Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[Al]

Al, I think the more people that are diagnosed with vasculitis makes "the classic WG" less classic. I am positive MPO actually more often than I am PR3 - yet sometimes both are positive. I have lung granuloma, sinus, and kidney involvement. I do not think they should force us into standard boxes; however, for the sake of science it seems they must do that!

I agree, Trudy. Personally, I have kind of a love/hate relationship with diagnoses, both in principle and in fact. The main reason for a DX--any DX--is to justify a certain therapeutic course of action. Bully for Big Pharma (and for research based on pharmaceutical treatment protocols), but less meaningful, in many ways, to the actual sufferers. Yes, I know that patients like a diagnosis as a kind of "closure", and it is true that doctors would be irresponsible to begin harsh treatments without a clear path to some sort of remediation. Yet the bottom line is that, when you hurt, you hurt. The rest is, as they say, commentary.

I think that it is a good start that the present nomenclature does allow for many variations along several continua: Vasculitic vs. granulomatous characterization; ANCA positive vs. ANCA negative presentation; C-ANCA/P-ANCA/Atypical ANCA in any combination; and so on. There are a few normal (but not definitive) correlations, which is why certain names have a ring (but no guarantee) of certainty: Upper airway involvement is less usual for P-ANCA than for C-ANCA (as I have always had P-ANCA, this describes me); Granulomas are more associated with C-ANCA (my biopsies have suggested "vague garnulomatous formations", but nothing obvious); P-ANCA correlates more highly with kidney involvement (both correlate highly with lung involvement, though there there are fewer P-ANCA patients without lung involvement than C-ANCA patients); some sort of ANCA correlation is present in about 90 percent of those with any of the known vasculidities that we think of as "WG". Nevertheless, I am not a big fan of thinking of names as having magical powers. They are, to me, a feature of conversation. That is all.

Al

[HopeinTN]

I agree with you both. I'm just so curious about this crazy disease and thought I had an understanding until this stumped me. Nevertheless, as Al mentioned, I'm gettign the correct treatment, the rest is Alphabet Soup. It's all so weird.

I'm so thankful for wiser and more seasoned minds on this site. I would be so alone in all this without you guys.

Hugs to all!

[HopeinTN]

I had my 2nd CT scan since starting treatment Oct. 2011. I see my Dr. on Tuesday to discuss the CT and next steps of treatment. I was able to get a sneak peak at my scan and this is what I found:
Lymphatics: Conglomerate lymph nodes in the AP window measure 2.1 cm in long axis, unchanged. A right hilar lymph node measures 3 cm, previously 2.6 cm. Surgical clips are seen in the right hilum. A left hilar lymph node measuring 1.3 cm is unchanged. There is no axillary adenopathy.

Lung parenchyma and pleural space: Postsurgical changes of right middle lobectomy are again identified. A 6 mm nodule in the medial aspect of the left upper lobe is unchanged. No new nodules are seen. There is no pleural effusion.

So, If I have been on Cytoxan since Oct. 2011 shouldn't it show some change in the lung nodules? Any thoughts on what this means or what direction she may want to go. I need some help with questions to run by her for next steps. Also, why would a lymph node be getting larger?

In addition, this is what came of the CT for my abdomen:
Kidneys: Mild scarring is identified along the posterior aspect of the left kidney. No stones are identified in either kidney. The right kidney demonstrates a normal noncontrasted appearance.

Lymphatics: Small lymph nodes are again identified in the mesenteric fat; the largest identified lymph node on the examination is in the right external iliac chain and measures 6 mm in short axis.

I have had a few kidney stones that would explain the scarring in the left kidney. What's an iliac chain and what's up with these lymph nodes?

Even my lymph nodes are characterized as "fat". Just my luck. LOL!

[drz]

I think you have the right questions. Hope the answers they give you are OK too? Are you considered in remission? If so, for how long?

Lymph nodes might not be related to Wegs except as a side effect of treatment. I developed lot of lumps (possible lymph nodes I guess) in breasts and arm pits and have been evaluated several times for possible lymphoma and/or breast cancer but those evals say no cancer yet but keep checking often. Lumps are sometimes painful, especially to hard touch, and doctors think it might be just another one of the nice side effects to GPA treatment. Keep us posted.

[pberggren1]

What symptoms are you having now?

Why so long on ctx? That is scary.

What does your Wegs doc say?

[pberggren1]

Why was the CT ordered?

[drz]

I agree, Trudy. Personally, I have kind of a love/hate relationship with diagnoses, both in principle and in fact. The main reason for a DX--any DX--is to justify a certain therapeutic course of action. Bully for Big Pharma (and for research based on pharmaceutical treatment protocols), but less meaningful, in many ways, to the actual sufferers. Yes, I know that patients like a diagnosis as a kind of "closure", and it is true that doctors would be irresponsible to begin harsh treatments without a clear path to some sort of remediation. Yet the bottom line is that, when you hurt, you hurt. The rest is, as they say, commentary.

I think that it is a good start that the present nomenclature does allow for many variations along several continua: Vasculitic vs. granulomatous characterization; ANCA positive vs. ANCA negative presentation; C-ANCA/P-ANCA/Atypical ANCA in any combination; and so on. There are a few normal (but not definitive) correlations, which is why certain names have a ring (but no guarantee) of certainty: Upper airway involvement is less usual for P-ANCA than for C-ANCA (as I have always had P-ANCA, this describes me); Granulomas are more associated with C-ANCA (my biopsies have suggested "vague garnulomatous formations", but nothing obvious); P-ANCA correlates more highly with kidney involvement (both correlate highly with lung involvement, though there there are fewer P-ANCA patients without lung involvement than C-ANCA patients); some sort of ANCA correlation is present in about 90 percent of those with any of the known vasculidities that we think of as "WG". Nevertheless, I am not a big fan of thinking of names as having magical powers. They are, to me, a feature of conversation. That is all.

Al

This is a nice summary by Al of some important info that maybe ought to be filed some where else like under initial diagnosis. Thanks Al. Miss your input and caring concern.

[dennis2512]

welcome this forum has been great for me. my husband dx aug 2011. unfortunatly ctx didnt help my husband but he start rtx 2 weeks ago, soo far hes only symptom is muscle weakness which has effected hes back which was already troublesome due to a injury 30 years ago dennis is 50 yrs old. he gets very low at times feels he is a burden on the family but i try all the time to reassure him how much we all love him. unfortunately we have not been given much support we only have this forum and the internet for information . dennis has sinus and lung involvement crissie

[mishb]

Hi Crissie,

We in Oz don't seem to have the support that USA have in regards to any symposiums (sp) etc to attend or cluster type meetings.

Stick with us though and we will try to help as much as possible. I'm glad Dennis got to have the RTX.
Hopefully things will come good for him soon.
Maybe he can come on here as well for support and to know that he is not alone in his fight.

Take care of yourself and Dennis.

[HopeinTN]

The CT was ordered of the lungs to see if the CTX had made any improvement. The CT for the abdomen is becasue I recently changed urologist so all docs are now at Vanderbilt. I think she wanted to make sure there were no stones and have a good starting point (urological issues all my life). I would like to know that Wegs isn't in my kidneys as well since some symptons could be that but could also be other things (blood in urine).

I have not been told I'm in remission and they planned on CTX for 18 months. I still have pain in both lungs (my nodules are touching the pluera and it's rather painful and how we found out I had Wegs. I did not have ANY wegs symptons aside from severe pain in my chest that came on suddenly. Very lucky the way I see it. I had a CT after 6 months of treatment and showed no change in teh nodules. This is my almost 1 year follow-up (Oct).

In addition to the continued pain, I've recently started having nose bleeds and other respiratory issues. I will be seeing my first ENT in Oct. and will have a CT to make sure it's not Wegs. My last labs in June showed an elevated SED and CRP.

I go tomorrow to see my Rheumy and discuss the CT and next steps. After that I will see the urologist to discuss the CT and have a proceedure called a cystoscopy (take a peek in my bladder and make sure all is ok there- like I mentioned, I've always had issues, stones and now blood in my urine). Not too worried but not looking forward to this. Been there and done that. Yuck!

Thanks so much for the input. I too miss Al as he always said the best things and gave great advice!