timer lady
Queen of Hearts
on the attack on my body.
No diagnosis as of yet as the almost 10 months of prednisone is masking so much. And that same prednisone is killing me - literally. That is what Mayo doctor had to say on Tuesday. husband & I were dumbstruck at his brutality AND it got our attention. It also got the attention of my neuro doctor & GP here in the TC.
The initial diagnosis no longer matters....... it's the Cushing's Disease that matters now.
Prednisone is being titrated down by 5 mg. a week. At the same time, methotextrate (a chemotherapy drug) is being prescribed to treat the auto immune symptoms. This medication is used by rheumatologists to treat vasculitis, polymyosistis, dermamyosistis, & Susac syndrome (but at a lower dose than if I were being treated for cancer). All diagnosis's that have been made, dropped, made again, dropped again & are all off the board until further notice.
Neuro doctor is handling the post herpetic, post meningitis, post CNS infection symptoms with strong pain medications & is increasing my neurontin & keppra.
Just for shi$s & giggles, GP is treating the blood pressure & rapid pulse issues brought on the prednisone; she's also in charge of all the blood work & ordering further tests that need to be done while on the methotextrate.
husband is to set up & monitor my medications as I keep screwing that up & there will be many changes done quickly.
My new exercise routine. Walk about the living & dining room for one minute three times a day. If you hadn't guessed it, I'm extremely weak. I've been told it will get worse before it gets better.
So Sunday, I'll be down to 45 mg/daily of prednisone. It will take approximately 2 1/2 months to d/c this stuff if my body doesn't go into adrenal crisis. At around 10 mgs of prednisone we will know if my body will start kicking in & doing this on it's own.
Last July 2nd this all started ~ my sed rate was over 120, my head felt as though it was going to explode, I was partially paralyzed & came home with a cane & a walker. I missed the tweedles 13th birthday because I was in the hospital.
Finally a team of doctors that have taken charge & are no longer messing around. They are making no guarantees as to the level of recovery I will make & are encouraging me to apply for disability.
I'd appreciate any positive thoughts, prayers & encouragement. I'm pretty down tonight.
Thanks for listening - just needed to "talk".
No diagnosis as of yet as the almost 10 months of prednisone is masking so much. And that same prednisone is killing me - literally. That is what Mayo doctor had to say on Tuesday. husband & I were dumbstruck at his brutality AND it got our attention. It also got the attention of my neuro doctor & GP here in the TC.
The initial diagnosis no longer matters....... it's the Cushing's Disease that matters now.
Prednisone is being titrated down by 5 mg. a week. At the same time, methotextrate (a chemotherapy drug) is being prescribed to treat the auto immune symptoms. This medication is used by rheumatologists to treat vasculitis, polymyosistis, dermamyosistis, & Susac syndrome (but at a lower dose than if I were being treated for cancer). All diagnosis's that have been made, dropped, made again, dropped again & are all off the board until further notice.
Neuro doctor is handling the post herpetic, post meningitis, post CNS infection symptoms with strong pain medications & is increasing my neurontin & keppra.
Just for shi$s & giggles, GP is treating the blood pressure & rapid pulse issues brought on the prednisone; she's also in charge of all the blood work & ordering further tests that need to be done while on the methotextrate.
husband is to set up & monitor my medications as I keep screwing that up & there will be many changes done quickly.
My new exercise routine. Walk about the living & dining room for one minute three times a day. If you hadn't guessed it, I'm extremely weak. I've been told it will get worse before it gets better.
So Sunday, I'll be down to 45 mg/daily of prednisone. It will take approximately 2 1/2 months to d/c this stuff if my body doesn't go into adrenal crisis. At around 10 mgs of prednisone we will know if my body will start kicking in & doing this on it's own.
Last July 2nd this all started ~ my sed rate was over 120, my head felt as though it was going to explode, I was partially paralyzed & came home with a cane & a walker. I missed the tweedles 13th birthday because I was in the hospital.
Finally a team of doctors that have taken charge & are no longer messing around. They are making no guarantees as to the level of recovery I will make & are encouraging me to apply for disability.
I'd appreciate any positive thoughts, prayers & encouragement. I'm pretty down tonight.
Thanks for listening - just needed to "talk".
I am sorry it has come to this, but you have to do the right things for yourself - even if you do not want to. 
