Rheumy visit

[Guest guest]

Hi all,

Went in to see my rheumy today and wanted to touch

base and let you all know how it went. First off, I

am not to lower the prednisone again until I see him

in six weeks. In fact, I can raise it until my stupid

ears are more comfortable. Same old/same old. Asked

why my ears are so bad again and he feels it is

becuase I am not getting enough Remicade yet. Still

thinks I produce an extra lot of TNF. So, he is

upping it by another 200 mg. which will put me at 500

mg. per infusion. I get my next infusion on the 12th

of this month. After my last infusion of 300 mg. my

blood pressure went down to 91/51, so I hope this is

not going to create another problem!

I told him about losing two members last month and

asked for a pulmonary function test. I've had some

shortness of breath and can't even blow out a pillar

candle anymore without practically killing myself. I

am going to try and clear that with my PCP when I see

him on Thurs. If he has a problem with that, the

rheumy will handle it. Due to being in an HMO, the

order should come from my PCP.

Anyway, he told me that if RP is affecting the

respiratory tract it would be the inhalations that are

weaker, not the exhalations. The way he explained it

is that as the trachea becomes weak and floppy, when

you breathe in it creates a negative pressure and that

is what causes the trachea to actually collapse. He

said that some people with connective tissue disease

are short of breath because it can affect the lungs

and there is nothing that can be done about that. I

am dx'd with mixed connective tissue disease also. Not

a very encouraging appointment as far as I was

concerned. It's the old prednisone dance...two steps

forward and three steps back. I asked if I would ever

get off of it and he still hopes that I can. At least

I am on a single digit dose, and I am happy about

that.

My ears are still bad today and I may increase the

pred again tomorrow. Just increased on Sunday tho'

and want to give it a chance to get working.

Hope everyone is doing well and that you have sunshine

and blue skies where ever you are.

Love, squeek

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