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KP, I'm relieved to read that you have found another doctor & hopefully things will now move forward.

I had taken the liberty of bothering one of the co-owners, Tracie, who is supposed to be on a much-needed break from the group, because I was so worried about you. Tracie worked with a group of opthomalogists for many years & was herself a certified optical technician (I may have the title wrong) and she is extremely knowledgeable about eye problems & sarc. I hope you & everyone else in the group takes her advice to heart.

Date: Wed, 27 Oct 2010 23:33:43 -0700Subject: Re: please helpTo: mamadogrose@...

She needs another doc. The man's an idiot.

She needs a GOOD OPHTHALMOLOGIST. M.D. HE'LL FLIP WHEN HE SEE THE RAPID TAPER OF THE PRED. PRED FORTE DROPS may help with her eyes-- but even that is a SLOW taper.

Since her doc doesn't have a clue about sarc-- and what it can do -- she has to get another doc. There has to be another one on her insurance that can take over-- otherwise she has the right to go "out of plan." She needs to contact her plan administrator-- what insurance is it anyway?

I suspect she has lung involvement also? What else?

Since her eyes are still screwed up, that alone is a sign that the pred has NOT even started to settle any of the systems down-- and she'll flare like a wildfire with this approach.

She needs to be on Imuran, Arava, or one of the other alternatives while she tapers-- as she is "multi-system."

SHE HAS TO GET ANOTHER DOC!!! FIRE THIS IDIOT'S ASS. NO BONES-- HE HAS TO GO-- HIS CHOICES WILL MAKE HER AS SICK AS TERESA WAS FOR SO MANY YEARS-- AND I KNOW TERESA CAN SPEAK LOUDLY HERE--

We can hope that some of the vision loss is from the high dose pred-- since it skyrockets blood sugar-- it wreaks havoc on the vision-- but a fast taper on that dose will throw her into adrenal crisis.

Search the ARCHIVES for some of the articles I've done on adrenal crisis.

I'm not online much-- but I'll check back and see what info you send.

You can forward this, or copy/paste my reply-- whichever works best for you.

Love ya,

Tracie

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Thanks Tracie,Yes she is like gold, with many words of wisdom, she helped me through a few crisis, help me get Remicade that I fought a whole year for, she is amazing, and knows her stuff. Thanks Rose,

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

KP, I'm relieved to read that you have found another doctor & hopefully things will now move forward.

 

I had taken the liberty of bothering one of the co-owners, Tracie, who is supposed to be on a much-needed break from the group, because  I was so worried about you.  Tracie worked with a group of opthomalogists for many years & was herself a certified optical technician (I may have the title wrong) and she is extremely knowledgeable about eye problems & sarc.  I hope you & everyone else in the group takes her advice to heart.  

 

 

Date: Wed, 27 Oct 2010 23:33:43 -0700Subject: Re: please helpTo: mamadogrose@...

She needs another doc.  The man's an idiot. 

She needs a GOOD OPHTHALMOLOGIST.  M.D.  HE'LL FLIP WHEN HE SEE THE RAPID TAPER OF THE PRED.  PRED FORTE DROPS may help with her eyes-- but even that is a SLOW taper.

Since her doc doesn't have a clue about sarc-- and what it can do -- she has to get another doc.  There has to be another one on her insurance that can take over-- otherwise she has the right to go " out of plan. "   She needs to contact her plan administrator-- what insurance is it anyway?

I suspect she has lung involvement also?  What else? 

Since her eyes are still screwed up, that alone is a sign that the pred has NOT even started to settle any of the systems down-- and she'll flare like a wildfire with this approach. 

She needs to be on Imuran, Arava, or one of the other alternatives while she tapers-- as she is " multi-system. "  

SHE HAS TO GET ANOTHER DOC!!!   FIRE THIS IDIOT'S ASS.  NO BONES-- HE HAS TO GO-- HIS CHOICES WILL MAKE HER AS SICK AS TERESA WAS FOR SO MANY YEARS-- AND I KNOW TERESA CAN SPEAK LOUDLY HERE--

We can hope that some of the vision loss is from the high dose pred-- since it skyrockets blood sugar-- it wreaks havoc on the vision-- but a fast taper on that dose will throw her into adrenal crisis.

Search the ARCHIVES for some of the articles I've done on adrenal crisis. 

I'm not online much-- but I'll check back and see what info you send. 

You can forward this, or copy/paste my reply-- whichever works best for you.

Love ya,

Tracie

 

 

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