It's definitely a flare up

[Dirty Don]

Be patient, the pimples go away with pred reduction, fatigue comes and goes no matter what, best of luck next week!

[Pete]

Hey Mike,

Have you had your kidney function, blood pressure and heart checked out lately? I'm concerned that your symptoms (fluid retention and shortness of breath) might be associated with kidney involvement or congestive heart failure. Just because we have wegs doesn't mean we can't have other problems. Whatever is going on, I hope it's fixable/treatable.

Sorry if I'm being too alarmist here.

[MikeG-2012]

Hey Mike,

Have you had your kidney function, blood pressure and heart checked out lately? I'm concerned that your symptoms (fluid retention and shortness of breath) might be associated with kidney involvement or congestive heart failure. Just because we have wegs doesn't mean we can't have other problems. Whatever is going on, I hope it's fixable/treatable.

Sorry if I'm being too alarmist here.

Yes, Pete, we've checked kidneys at every blood test, BP is fine. The shortness of breath is what got me to the doc in the first place. First the chest x-ray, then the CT and then they found out the lungs were flared up this time. So, it's definitely a lung thing, just like my original diagnosis. My PFTs have never come back over 75% since my original diagnosis. Part of it is because of the extra weight I've put on due to inactivity of the body, appetite from the pred, and to be honest, lack of self control. (-8 Food was the ONLY thing that I had that was good during the 4 months of CHRONIC, debilitating headache pain. So, now I have to work it off when I get the pred down and am able to be more active.

Every day seems to be betting a little better. Some days where a little isn't really very much though.

NEVER, NEVER be sorry for being concerned and alarmed at someone's situation. If we all keep an eye on each other, we can HELP each other!!

Thanks,
Mike

[MikeG-2012]

To top off a perfectly mediocre week health wise, we lost our 12 year old Golden Retriever yesterday...



So, this week officially stinks (I have better words for this, but will leave it rated G o the forum)!

Mike

[annekat]

I'm so very sorry, Mike. Sounds like it might have been sudden and unexpected. But either way, it hurts deeply, and ruins your life for awhile. I enjoyed seeing the pictures of your beautiful dog. You have my deepest sympathy.

[pberggren1]

She is very beautiful Mike. I'm sorry for your loss.

[mishb]

I'm sorry that you have had the week from hell, Mike.

It is also sad to lose a loved member of the family and I am sorry for your loss.

I am glad that you are starting to feel a little better, health wise.

Take care

[MikeG-2012]

Thanks everyone for the messages and posts. It's been a rough couple of days. The quiet has been the worst part. Our Lily doesn't bark much (not at all), so the silence in the morning around the house has been deafening. Our dogs are our children, and Cassie was an certainly an integral part of our daily lives. We miss her every minute, every hour.

If I can get through this week, things have to get better, right?

Thanks again everyone!

Mike

[Alysia]

Hi Mike,
I am sorry for your loss. I understand your pain.... and feeling of a "hole"...
she was blessed to have you and you were blessed to have her, so vital and pretty.
take care.

[MikeG-2012]

Latest Update:

Friday, December 13 , I saw the Rhuematoogist and found out what the next round of meds are: Azathioprine! So I start those tonight after I pick them up from the pharmacy. I also found out that the burning sensation in my mouth was "thrursh" and now have a rinse for that (Nyastatin). Tastes OK, but gives me the terrible case of burps for a couple hours after I swallow it.

Prednisone was lowered to 30 and will go to 20 in two more weeks. Then, two more weeks on 20MG Pred and I go back for more blood work and a new chest x-ray.

C-Reactive Protein and Sed Rate are sky high again, I'm worried about those because they were fine after starting the RTX and the higher doses of pred. they were the ONLY indicator that I was flaring up (except for the MAJOR SINUS ISSUES!). My ANCA has been negative in EVERY test since original diagnosis and treatment 21 months ago. Rheumy doesn't seem as concerned as I am though. I'm going to keep a watchful eye to make sure this isn't some marker to me flaring up again. With the sinus infection that is constant, the infection in my mouth, the inflammation markers may mean nothing, but they may mean everything. I'm keeping my spidey senses on high alert in the mean-time.

Hope all of you are having a great week. Thanks for the support and kind words when I was going through a really rough week a few weeks ago. Things are calming down to the new "normal" around our house.

MikeG-2012