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robbinsnancy
Member
| Joined: | Thu Jul 24th, 2008 |
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| Posts: | 2 |
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Posted: Fri Jul 25th, 2008 02:37 |
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hi, my sister is extremely ill with neurosarcoidosis. her vit D ratio has always been at least 2 since she became ill. i want her to start MP as soon as possible, but need to convince family members it is a good idea.
she is very nervous to wean off prednisone, and has been told that her pituitary or adrenal is not working properly, potentially due to a sarcoid (her ACTH is undetectable, and cortisol is barely detectable). i understand that long term use of prednisone may have caused this.
is it possible to try a therapeutic probe while on prednisone? or would she need to wean all the way off (which i understand could take a while) before she tries? would she induce immunopathology by just avoiding vitamin D without benicar and minocycline? i would love to be able to get results from a therapeutic probe; and use this to convince people that MP will work for her!
thank you so much,
nancy
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Julia
Advocate
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Posted: Fri Jul 25th, 2008 09:07 |
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Hi Nancy,
While your sister is on steroids, we don't recommend trying a therapeutic probe. Please see Weaning from steroids. Note that Benicar helps with the weaning process.
The only people who need to be convinced that the MP will help your sister are your sister and one prescribing doctor. It certainly helps if other family members are positive about it as well, but many of us have got well without that luxury!
It's good of you to do this research for your sister and I'm sure she appreciates it. However, it's been found that those who take charge of their own recovery and do their own reading about the MP and post their own questions (if at all possible) tend to recover better.
MP Memberships Temporarily Closed
Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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cathys2007
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| Joined: | Tue Jun 17th, 2008 |
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| Posts: | 17 |
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Posted: Fri Jul 25th, 2008 13:20 |
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Nancy,
I would like to share my recent experience. I weaned prednisone Feb 2008 without the benefit of benicar. Earlier this month, my doctor said that my ACTH was undetectable and cortisol was way below normal. I was very nervous about this and starting MP. I recently started the benicar and felt as though my hormones adjusted. I had more energy and I felt generally better. I wish I had access to benicar when weaning because I feel the process would have been easier for me.
Also, I started wearing the NOiR's in Jan 2008 and noticed a big improvement in my neuro symptoms. Your sister may benefit as well.
All the best to you and your sister,
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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