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Rick, I looked on several sites & protein in the CSF (cerebral-spinal fluid) can indicate infection, inflammation, tumor, injury, etc. Since NS is an inflammatory process, elevated protein would be expected. Other causes should be ruled out, but I sure don't see why Remicade would be contraindicated. In fact, Dr. Baughman, one of sarc gurus, talked to me about Remicade a couple of years ago, and he knew that my CSF protein was elevated. Here are some resources to discuss with your doc. http://www.nlm.nih.gov/medlineplus/ency/article/003628.htm Here is an excerpt from: http://www.emedicine.com/neuro/topic557.htm Assessment of CSF protein level, while nonspecific, can be a clue to otherwise unsuspected neurologic disease. The high protein levels in demyelinating polyneuropathies, or postinfectious states, can be informative. A traumatic tap can introduce protein into the CSF. An approximation of 1 mg of protein per 750 RBCs may be used, although a repeat tap is preferable.

And lastly, this is the Univ. of land website: http://www.umm.edu/ency/article/003428res.htmRick, I hope this helps!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: jack11973@...Date: Fri, 19 Oct 2007 10:22:46 -0700Subject: RE: Remicade

Thanks Rose!

Rose <mamadogrose (AT) hotmail (DOT) com> wrote:

Rick, I've never heard that. In fact, elevated protein is a possible marker for NS. I'll try to find something on it for you.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: jack11973 (AT) yahoo (DOT) comDate: Wed, 17 Oct 2007 05:18:49 -0700Subject: Re: Remicade

Hi,

I was recently told by my neurologist that Remicade will be ineffective if there is an elevated protein count in my spinal fluid and recommends that anyone intending to use Remicade for NeuroSarc should have a lumbar puncture first. Any thoughts on this?

Ricktiodaat (AT) aol (DOT) com wrote:

Guys,

Remicade is probably not going to be FDA approved for sarc-- so it will continue to be off label use.

However, there are articles that state that it is effective, and I do hope that each of you is reading ALL the emails that are posted to the group and not just the ones that have your issue on the subject line.

So many times the questions we ask are situations that all of us are going thru, and I make my replys available to all. This is the greatest benefit of "group" process.

We all need to learn to "search" for information. The easiest way is to put in -the body part (ie. lungs) and sarcoidosis. Or search by "humira" and sarcoidosis. Or by "Remicade" and sarcoidosis.

You will get a a list of sites, and by clicking on anyone of them, you will get the referenced article. If it is a site that requires you buy the article, you may want to just get the summary (no cost) and give it to your MD. Maybe he already has a subscription to the primary site.

Local cancer libraries also have computer access, generally speaking, and you can often times get the articles from those locations without cost.

Best wishes for all of us,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

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