Me too - New GPA diagnosis. High Anca titer

**Gab122** · 09-13-2016, 12:31 AM

So my heart rate got up to 139 last night with Blood pressure at 159/98. I called my pcp and spoke with a nurse. She thought I Shd go back to ER or call MGH RA.

I spoke to MGH. They said all my symptoms can be explained by high pred. He said anxiety, increased heart rate etc is extremely common on high pred. My BP did drop to 139/83 soon after I sat down. By 11 pm it was 111/84. With 87 heart rate - I am skipping all caffeine today and my BP this morning was 120/84. My HR is in the 90s. Fasting Blood sugar 88/ and after bfast 112. So despite all of that being fine I feel a bit shaky and light headed. I guess that's the prednisone?

I do have follow up to ER visit with my pcp today.

MGH RA doc thought I Shd have an anxiety med on hand like Xanax. Do any of you use that? I'm a bit hesitant. I've been pretty calm since my 8/1/16 GPA diagnosis despite all the craziness. Could I suddenly become anxious due to pred 6 weeks in?
Gab

**Dirty Don** · 09-13-2016, 02:58 AM

I carry Xanax with me at all times...and I take Lexapro daily. Neither interfered with my other meds. Pred can escalate a tendency to anxiety, but doesn't cause it. If you're gonna be 'anxious', it will happen & one can't control it until diagnosed. Relaxxxxxxxx!

**Gab122** · 09-13-2016, 07:23 AM

Thx Don!
But easy said than done.

I will try tho.

**DWendy** · 09-13-2016, 12:33 PM

Originally Posted by Gab122

Got on the scale today. Up 5 lbs since Wednesday?!?! My face is also starting to show that full "moon" look. Guess prednisone gain has started.

Sent from my iPhone using Tapatalk

As long as the prednisone is doing it's job then I guess the full moon face and weight gain are a small price to pay. I will keep my fingers crossed for you.

Sent from my iPad using Tapatalk

**blm** · 09-13-2016, 01:40 PM

Probably just water weight. Mine has been fluctuating some too. Goes up, then down, then up then down. Just like our new lives.
Hang in there!

**Gab122** · 09-14-2016, 11:01 AM

Thanks blm and wendy!

**Alysia** · 09-17-2016, 04:00 AM

maybe I am writing too late... only now back on the forum. I think that the drop from 60 to 40 mg of pred was too big. you needed to do it in smaller steps. it explain the shaky feeling. at least for me.
as for psych meds, I suggest to be careful. some have long term bad side effects. better to go to psychotherapy, to pray, to try relaxations methods, to listen to music, to drink camomile tea and to come to the forum

**annekat** · 09-17-2016, 04:37 AM

Originally Posted by Alysia

maybe I am writing too late... only now back on the forum. I think that the drop from 60 to 40 mg of pred was too big. you needed to do it in smaller steps. it explain the shaky feeling. at least for me.
as for psych meds, I suggest to be careful. some have long term bad side effects. better to go to psychotherapy, to pray, to try relaxations methods, to listen to music, to drink camomile tea and to come to the forum

I agree, no reason not to go a little slower on the pred drop. Can't say for sure what is causing your specific issues, but at your stage, being conservative about changes is a good approach, I think.

**Gab122** · 09-17-2016, 10:13 AM

Thanks Alysia and Anne!

I'm inclined to agree that it was too big a jump - but I've made the jump for a week now and don't want to go back up.... I will ask to have a smaller taper down next time. The shaky feeling has lessened a bit so i'm hoping it will continue to lessen. I'm not sure if it's the prednisone or the tapering down of the prednisone (or the fact that I did it on the weekend of 9/11, that date always makes me a bit anxious) but I did get very anxious right then and I did start to feel shaky right then. In anycase a smaller taper would probably be better.

to update you all....
I went to have the mass on my kidney evaluated further this week and because they can not clearly see where the mass is growing out of/ the point where it is attached to, I have to have a kidney biopsy which I've scheduled for this coming Wednesday. They still think it is a benign angiomyolipoma (AML) (which was just incidentally found when they were checking my kidney's for GPA) but because they are not 100% sure, we have to do a biopsy. It's a large mass (7cm x 5cm x 4.7cm) and it's sort of located in the middle of my kidney which is a bit of an unusual location for an AML. If it is an AML, they will probably do an embolization of it because of it's size. Which would be another procedure. **Sigh** But that would be a good problem compared to the other option of it not being a benign AML. It's all perspective right!

For those of you who had kidney biopsy's what was the recovery like the next day?

Have any of you had an Angiomyolipoma or had an embolization?

Would love any info...
thanks
Gab