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Old 01-13-2014, 01:19 PM #7
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ElaineD ElaineD is offline
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Location: North Carolina
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ElaineD ElaineD is offline
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ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
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Dear en bloc,

I'm so sorry you had so many terrible long term consequences of the steroid therapy.

I know this is the very reason that no responsible doctor will put a patient on long-term steroid use unless it is a matter of life and death.

I know patients who plead to continue on steroids and who are so angry when it isn't allowed.

It is the same thing with long term use of most opioids. Good doctors just don't do it in good conscience unless there are overwhelming reason to do so.

In my case, I think that a very low dosage, perhaps the ADT, would be possible.

Or, since I take Medrol to tolerate the IVIG, and my reaction doesn't start until 48 hours AFTER the IVIG, I could do a short taper at the time of each IVIG.

Right now my Immunologist is trying to get me full of IgG through the winter months, since it is CLEARLY WORKING so well for me.

And I do have the autoimmune conditions that go with CVID, my PIDD that I have IVIG to treat. That's why I have a total immune response to the IVIG, 48 hours later. My immune system is really upset by the 'foreign IgG and other stuff" that comes with the IVIG.

All of this will be dealt with carefully and with patience, persistence, and acceptance of whatever is next.

Hugs, Elaine.
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