Re: Re: New Member needs Advice

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Deb Z,

Keep your appt with the Rheumi. What you'll find is that pulmonologists will only address the lung issues, and lean totally towards prednisone as the only treatment choice. At least, the Rheumi will address the body pains-- and have alot more info on treating with DMARDS and BRMS. These are steroid sparing-- and with the sarc being multi system already, you don't want to have to do years of prednisone.

DO NOT TAKE SOMEONE ELSES PREDNISONE OR SOLU-MEDROL, AS THIS MEDICATION REQUIRES THAT YOU WEAN OFF IT. When you take steroids-- the prednsone sends a signal to your adrenals that you are getting to much (our body produces 15mg of cortisol a day) so it stops producing cortisol. This hormone regulates heart rate, most of our pituatary and hormones--so you can put yourself into adrenal crisis by not titrating off it. Cortisol is also the bodies natural pain killer, so as you wean off prednsione, your body has to relearn to make it's own steroids again-- so that wonderful feeling of euphoria and energy burst from the prednsone is followed by a crash of energy as you go down in strength.

Same is true with antidepressants-- any sudden stop can result in energy and increased depression-- so easing up on the dose, and easing down is rule of thumb.

As for adding the MS issues along with the other stuff, many times (in fact most of the times) I answer multiple issues in a single post-- with the volume we have at times-- it's the only way the mods and I can handle the volume-- so please- read em all! Your answer is in -a post - somewhere. It's also that with 600+ members, I can hardly remember my name-- and issues, so don't worry, I do read ALL the posts-- and go from there. (Much of the confusion is that I too have severe neurosarcoidosis!)

Glad you found us, and whatever issues come up- share and we will answer--

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, March 15, 2010 4:45:10 PMSubject: Re: New Member needs Advice

Tracie,Thank you for all of your good advice. At least I know I'm on the right track with diet changes and things. There is so much conflicting information that it's hard to know if you're doing the right thing or not.For example, my Vitamin D was tested and came back in the "insufficient" range, but not deficient... basically lower than it should be. In the past (pre-diagnosis) I was taking a D3 supplement 2-3 times a week. I've since stopped that because I read that Vitamin D can be a problem for us. I just read your post about D3 and now wonder if the supplement I was taking added to my problem and caused the flare???It's funny how you think you're doing things to help yourself...like eating low or no-fat dairy for the calcium content (and again Vitamin D), etc...and later finding out you may actually be hurting yourself in the long run.Anyway, I was able to get an appointment with a Pulmonary specialist in a few

weeks, so will start there and then decide if I want to keep the appointment with the current Rheumatologist or go to one that has experience treating this condition.Thank you again...the moral support available on this site is invaluable.Oh, and it wasn't me that asked about the bone pain, but I made note of the MSM since my joints have been aching for weeks now. And I wasn't diagnosed with MS, so I think you may have mixed my post up with someone else...hopefully they'll see your response to their questions here.Be well,Deb Z.Michigan>> Rheumatologists are actually a great choice to help you with your sarcoidosis. ..> TRIMMED PREVIOUS POSTS

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