Re: More sarc questions

[Guest guest]

HI Rob,

First off, there is no way to know how long you've had sarc. Most of the time our docs think that this is a disease that will "burn" itself out in 2-3 yrs. For most of us, it was a routine chest xray, or a bad respiratory infection where the doc finally decides to do a chest xray that finds the sarc. They won't even mention it if you're not complaining of shortness of breath.

The fact that you've got the symptoms of sarc-induced arthritis in your joints and muscles leads me to believe that you may have more than one system involved. You may want to try MSM powder--PUREMSM.COM and see if that helps. There is no side effects, and it may very well calm the muscles and joint pain down enough to keep you from needing prednisone.

HYDRATE, HYDRATE AND HYDRATE!!! The synovial fluid in your joints and spine needs to be able to act as a cushion-- and with your job where you are out in all kinds of weather-- it would be so very important. Wear that hat, and keep the sun protector on, so that you aren't getting overcharged with Vit D. There is one component of Vit D (1,25??) that may have some influence in about 20-30% of sarcoidians- but it's not totally proven. Have they checked your calcium, VIT D levels?

Prednisone does bring the inflammation down quickly, but the weight gain, the hyperactivity, the sleeplessness, can make it hell to concentrate. And when it's tapered off, the symptoms of sarc come back. Sometimes you get some time before it does, but most often, you'll feel the body pain coming back before you're off it.

Plaquenil or Imuran may be better choices. They don't create the prednisone brain fog. You can go to www.arthritistoday.org and pulll up the Drug Guide, and read about the various drugs. We also have a bunch of articles in our MESSAGE ARCHIVES.

As far as remission-- if you're feeling good, the body pain has gotten better, your breathing is less compromised, then you may be in remission.

Stress, pushing yourself beyond that place that says you are exhausted, eating the junk foods-- all end up keeping the cycle going. So listen to your body. You will have to learn to pace yourself.

Get rid of the gluten in your diet, (wheat), the refined sugars, and caffeine, sodas and high fructose juice will help. Cutting back on the dairy helps also. We have a tendency to not clear the toxins from our muscles-- so the lactic acid build up can be brutal.

Fresh fruits, veges, proteins (red meat should be cut back) in fish and chicken are good choices.

Keeping your blood sugars in check will also help with the body pain-- so grab some nuts and an apple for breaktime-- and watch the looks on your co-workers faces-- at least it's entertaining.

Hang in there, and let us know how we can help.

Tracie

NS Co-owner/moderator

Subject: More sarc questionsTo: Neurosarcoidosis Cc: robmcg2003@...Date: Friday, March 13, 2009, 7:01 AM

Thank you traci for your response I am 30 yrs old and my uncle also has sarc that is a blood uncle he has had it for about 17yrs but I never new it and he never complained about having it. How do you know that it is in remission. Also is there a way to tell how long you have had it for. I'm debating if I really need to take any steroids . I know there are side effects that I feel are worst then my symptoms are right now. Is more my choice or my docs choice to put me on meds . My real chief complaint is just joint and muscle aches. I am taking just extra strength tylenol. For the pain. Also my job is very active I am a outside electrical lineman I climb lots of poles and ladders. I really don't know what to take. I have to keep my mind clear for my job .one wrong move and I won't be worrying about sarc anymore. Any suggestions will be helpful. I also changed my diet to help the inflammation down is there any foods I must definetly stay away

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