Freaky's back from Addenbrooke's and...

**KathyB** · 02-14-2012, 04:26 AM

Hope you hear good news!!

KB

**Geoff** · 02-14-2012, 07:54 AM

Good Luck Sam, and fingers crossed for good news!!

Are you taking the 'Panther' up the M11??

Hope to catch up with you there for a coffee.

Al · 02-14-2012, 08:01 AM

Do well, Sam. We are rooting for you!

Al

**freakyschizogirl** · 02-15-2012, 12:35 AM

"Clinically in remission"

I have questions, but will save them for later.

Was lovely to see Geoff and Linda too xx

**pberggren1** · 02-15-2012, 02:47 AM

Totally Awesome!!!

Looking forward to questions and details.

**Geoff** · 02-15-2012, 02:55 AM

Great news Sam! and likewise good to meet up with you and Stuart.
Sam_Snow 009a.JPG

Weggies United!!!

**freakyschizogirl** · 02-15-2012, 11:06 AM

Originally Posted by Geoff

Great news Sam! and likewise good to meet up with you and Stuart.
Sam_Snow 009a.JPG

Weggies United!!!

Brilliant photo Geoff - eagle-eyed people will notice Dr Jayne's name behind us!

Yep, Remission.

So mixed about this! Been given the remission status before only to have it taken back when Wegs was smouldering. I think when i go back in May and the remission is holding i will believe it.

I expected to feel different in some way, i dunno how eactly, but like i said to Stu when i was sitting there having my infusions you'd think i'd feel differently with a litre of RTX coarsing through my body.

Typical of me i come out and think of questions i wish i'd asked!

My very helpful Doctor gave me a print out of my last 4 blood tests taken since July last year. What exactly am i meant to be looking at here? - In July 2011 my PR3 was 35, it went up to 69 and as of last Novemeber its back down to 50. What a "normal" person's PR3?
I'm still positive for ANCA but that didnt surprise me. Doctor thinks i'm slightly anaemic too - no surprises here either. What else should i be looking at on blood test results?

My next RTX is booked in for April and back to Adds in May. Doc says 6 monthly RTX for 2 years.

I can also now taper my pred too, so relieved about this. Been sitting at 5mg for a very long time now. Will start tapering tomorrow!
The doctor was also very cunning, she said that now she had said i can taper my preds that i needed to lose weight. She wants me to lose 7lbs by my next appointment.

She said i'd feel much better if i did. We'll see.

I will probably think of more things i want to know and ask more questions tomorrow. Thanks guys for being there with me!

**pberggren1** · 02-15-2012, 11:57 AM

My PR3 right now is 0. But it has been as high as 40 when I am flaring. So maybe your PR3 is just not reliable.

Other blood tests that I follow are CRP, ESR, CBC, WCC, Creatinine, and Urinalysis.

What is your BMI Sam? If it is really high then I can see your docs concern. Do you have a blood pressure monitor at home? Good idea to get one to monitor ones BP. Do you have your lipids tested as well?