Me too - New GPA diagnosis. High Anca titer

**blm** · 10-01-2016, 10:49 AM

I had all of the same symptoms you are describing, funny feeling in ears, short of breath, feeling like I have low blood sugar. When I started tapering the prednisone they were reduced. I don't know if yours is related but it sure seemed like mine was. I am now down from 60 mg to 30 mg for the next few weeks. However, this morning my cheeks looked like apples!! And I have a lumpy neck!

I hope you can find some relief from your symptoms. Wishing you the best as you make your important decisions. I hope you have family to help you weigh all the options. If not, you know that we all will offer opinions - some more informed than others.

It takes time to process all of this. One step at a time. That's all we can handle.

--Becky

**Alysia** · 10-01-2016, 11:50 PM

You are beautiful Gab. You too Becky. No matter how your faces look like. Sending prayers & hugs & words of wisdom of my sweet dr. Phil. I hope its clear enough for reading.

2016-10-01 15.45.50.jpg

**Middlesista** · 10-03-2016, 05:25 AM

Gab - your feelings are well justified, you had the rug yanked out from under you and have had to endure testing, procedures, medications and the uncertainty that goes along with GPA. The physical changes effect each of us differently and may not help our sense of self. It su*ks and is our reality. With that said - like many folks here have said things do seem to improve. We learn to adapt, to be vigilant in monitoring our health and making sure our health care team knows their "stuff". Try not to be so hard on yourself Gab - regaining your health is the priority - the weight and the prednisone face will improve.

**Gab122** · 10-03-2016, 08:53 AM

Thanks Alysia and middlesista, I rejoined weight watchers today. I'm going to give it a try. Even if it helps me not gain further I suppose that's a victory.

**Gab122** · 10-04-2016, 11:29 AM

Feeling strong and confident and peaceful

**Gab122** · 10-07-2016, 03:05 PM

crazy roller coaster week...

Hi all,

Recap: I had Kidney Biopsy on Wed 9/21/16 and Chest CT on Tues 9/27/16 and though I found out the (good) Chest CT results quickly, I had waited a week to find out the biopsy results... it was a very difficult wait by the end of the week but when the results came in they were good news - so that was good.

Then, last Sun, I was finally able to read the chest CT report in my online patient record. It says my Angiomyolipoma has grown since August.
"Incompletely imaged, at least 6.8 x 6.1 cm, hazy fatty lesion, filling and

splaying right renal sinus and displacing right renal vessels has enlarged since
8/2016, at which time it measured approximately 5.7 x 5.7 cm. This mass extends
upward into the right suprarenal space and medially displaces the right adrenal
gland. While this lesion could represent angiomyolipoma, its location and
behavior seems somewhat atypical. Possibility of a retroperitoneal liposarcoma
is raised. Consider diagnostic intervention."
The Pulm dr didn't mention that to me when she called to tell me the lungs looked great.
Also, the Abdominal CT from 8/3/16 lists the mass as 7x5x4.7 cm (not 5.7 x 5.7) So I don't really know what to think about whether or not it's grown. And it's clear that the Dr who wrote the CT report, that mentions possible liposarcoma, didn't realize a kidney biopsy was already performed and the mass was already confirmed angiomyolipoma. The whole report left me very unsettled and anxious about this mass that the Urologist had told me there was no rush to embolize.

I sent the Urologist who ordered the kidney biopsy a message asking him to look at the Chest CT report and he replied that he looked at the images and it was "stable" - not growing.
So now I have conflicting info.

I've scheduled a consult now with Interventional radiology but won't see that Dr. til mid November. I do hope to go forward with the embolization of the angiomyolipoma before the year is out, even if there is "no rush" to do that. Even though he feels no rush, the Urologist's recommendation is to embolize it due to it's size and the fact that it's displacing parts of the kidney - and large angiomyolipomas have a greater chance of bleeding which could be life threatening. Honestly it kind of bother's me that he doesn't feel a rush to have the procedure done. He felt the chance of any problems arising in the next year were in the "single digits" but honestly, I don't want to risk it or spend any more time worrying about it. So all of that was troubling...

Then yesterday I went back to Boston for an Eye exam, Rheum follow up and Pulm Function test
It was my first eye exam done since Weg GPA dx. And it was awesome news that my eyes have no damage from this disease. They pressure in the eye is high (from prednisone) so he prescribed drops but there is no weg damage to the eye. YAY - great news.

Then I saw the Rheumy and she lowered my pred (tapering 5 mg each week til I go from 40 to 20) She thinks I've responded remarkably to treatment and that I'll be in remission as soon as she can taper me off Pred. She ordered labs as well - first time since the initial labs were done on 8/1/16. C-rp, Sed rate, CBC, Comprehensive Metabolic panel, C-Anca and Urinalysis.

Then I had a pulmonary function test done.

the Lab results are in except C-Anca.
C-rp went from 126 to 6!!!!
Sed went from 85 to 8!!!!
Both in the normal range now!
I'm EXTATIC about this!

Urine results, CBC and Comp Met Panel are all normal also!
Pulmonary Lung Function results look mostly normal after seeing the report (biggest exception is Expiratory reserve volume) but that doesn't seem to bother the Pulm dr as she said my PFT was normal and the report itself states in summary that my results are normal. I feel very short of breath in my lungs right now as I type though. Maybe its the prednisone? Maybe it's anxiety? I don't know...

So it's been a rollercoaster week... I'm very happy with the eye exam, kidney biopsy results, chest CT, lab results and that my pred is being further lowered, and at the same time I'm a bit anxious to see what the C-anca comes back at and I think I'll have to wait a week for those results. I was SUPER high at 1178 in august. I haven't had it checked since Aug 1. I'm kind of hopeful though that it will be much lower and I am aware that even if it's not lower it's not necessarily indicative of anything. And also I'm a bit anxious about getting rid of this angiomyolipoma as well. And I'm worried/hoping that the Pred taper doesn't bring back any GPA symptoms.

Soooo much going on in the last couple weeks/ months.
Just wanted to share with you all.

I hope you are all doing well.
- Gab

**drz** · 10-07-2016, 10:23 PM

Great Progress!

**Gab122** · 10-07-2016, 10:37 PM

THanks Drz! Do you know... Do people ever test negative for c-ANCA after treatment? Or is it generally just a lower score?

**Middlesista** · 10-07-2016, 11:35 PM

Labs are going in the right direction for you - that is GREAT! My Pr3 went negative first and a while later my cANCA became negative but my CRP has been up and down.

I understand you wanting the embolization done - I would do the same

Take Care