sarcoidosis

this site offers an overview of sarcoid(not specific to neurosarcoid), and it has some useful links near the end of it, which ive put here...


www.sarcoidosissharma.com/commonlyaskedquestions.html


Sarcoidosis Links & Websites

These websites include many links to other invaluable resources:


WASOG: World Association of Sarcoidosis and Other Granulomatous Disorders Resource for scientific journal Sarcoidosis Vasculitis and Diffuse Lung Diseases
Link: www.pinali.unipd.it/sarcoid/

Foundation For Sarcoidosis Research:
Andrea Wilson
P.O. Box 577-849
Chicago, IL 60657
and: 122 South Michigan Avenue, Suite 1700
Chicago, IL 60603
Link: www.stopsarcoidosis.org

Sarcoidosis Center:
Link: www.sarcoidcenter.com/

Sarcoidosis Research Institute:
Link: www.sarcoidosisresearch.org

Sarcoid Connection: The Reference Library
Link: www.sarcoidconnection.com/

SarcoidosisOnlineSites.com:
Link: www.sarcoidosisonlinesites.com/

National Sarcoidosis Resource Center:
Link: www.nsrc-global.net/

Sarcoid Buddies Group-Chat Site
groups.msn.com/SarcoidBuddies

Dr. Sharma’s Websites:
Link: www.sarcoidosissharma.com
and
Link: www-hsc.usc.edu/~osharma/#profile

Erythema Nodosum Support Group
health.groups.yahoo.com/group/erythema_nodosum_Group/

...suzan xx...............................

below is a link to a site which amalgamates all the recent medical profession et al. web activity......this site is extremely useful, so try it using their search engine, for more info. regarding your specific medical condition.

sarcoidosis


www.medworm.com/rss/search.php?qu=sarcoi...=Any&o=d&f=c

neurosarcoidosis

www.medworm.com/rss/search.php?qu=neuros...tions=on&info=on


xx suzan xx

Hi Suzan, I finally made it to this site. I thank you for all the info u posted. I am currently awaiting insurance approval for enbrel. I am refractory to prednisone and many of the other meds traditionally used to treat sarcoidosis. Enbrel is in a drug class called biologic's. It is a protien that inhibits the body's immune system from making TNF, tummor necrosis factor, the typical use for this medicine is for RA and other inflamatory diseases. Some studies suggest that it may help with sarcoidosis. We will see. I am eating oily fish and taking omega 3 supps. Just started so not a noticed difference. My pain med is 10 mgs of hydrocodone x6 a day. Numbs me up but doesn't take the pain away. Thanks for listening.

www.ablehere.com/component/option,com_jo...tid,11/id,2774/#2774

hiya mark ..yes chronic systemic sarcoidosis can be difficult to bring undercontrol, im sorry you are having this problem.....contolling the inflammation (and thus minimising scarring on the organ involved) and finding effective pain relief...can be a long process, and is person specific, wot works for one person may not work for the other.

you say that you are unable to take steroids, which are the first line of attack in sarcoid, i do hope that enbrel will help you.
below is a link to an overview of enbrel, as with other antiinflammatories, includins steroids, it can make you vulnerable to infection. if you suspect you have an infection, you should consult your GP/hospital.

it can take a few weeks before you notice any difference to the condition, so bear with it.

hang on in there my friend, and good luck.....

xx suzan xx


www.webmd.com/drugs/drug-16772-Enbrel+SubQ.aspx?drugid=16772
ETANERCEPT - INJECTION
Brand Name(s): Enbrel

Enbrel SubQ Uses

This medication is used alone or in combination with an immunosuppressant (e.g., methotrexate) to treat certain types of arthritis (e.g., rheumatoid, psoriatic, and ankylosing spondylitis), as well as a skin condition called psoriasis. These conditions are caused by an overactive immune system (autoimmune disease). The immune system attacks the body's own healthy cells, causing inflammation in the joints and skin.

Etanercept controls your body's defensive response by blocking the action of a certain natural substance (TNF) that is used by the immune system. Treatment decreases redness, itching and scaly patches in psoriasis as well as the pain, swelling and stiffness of joints in arthritis. This medication can stop the progression of disease and joint damage, resulting in improved daily functioning and quality of life.

This medication treats but does not cure autoimmune diseases. Symptoms usually return within 1 month of stopping the medication.

OTHER USES: This section contains uses of this drug that are not listed in the approved professional labeling for the drug but that may be prescribed by your health care professional. Use this drug for a condition that is listed in this section only if it has been so prescribed by your health care professional.

This drug has also been used to treat another autoimmune disorder called Wegener's granulomatosis. It should not be used with other immunosuppressants (e.g., cyclophosphamide) for this use.
How to use Enbrel SubQ

Read the Patient Information Leaflet provided by your pharmacist before using this medication and each time you get a refill. If you have questions about the information, consult your doctor or pharmacist.

Etanercept is injected under the skin of the thigh, abdomen, or upper arm, usually once or twice weekly exactly as prescribed by your doctor.

Make sure you learn the proper way to inject this medication from your health care professional, as described in the Patient Information Leaflet from the manufacturer. If you will be giving yourself the injection, your doctor may want you to have the first injection in the medical office.

Allow the medication to warm to room temperature before injecting. Do not shake the product. Before using, check this product visually for particles or discoloration. If either is present, do not use the liquid.

Before injecting each dose, clean the injection site with rubbing alcohol. It is important to change the location of the injection site each time you use this drug to prevent problems under the skin. New injections should be given at least 1 inch (2.5 centimeters) from an old injection site. Do not inject into areas of the skin that are sore, bruised, red, or hard.

Learn how to store and discard needles and medical supplies safely. Consult your pharmacist.

Your dosage is based on your medical condition and response to treatment. Do not change your dose without first consulting your doctor. Use this medication regularly in order to get the most benefit from it. You should start to see an improvement in 1 to 2 weeks. It may take up to 3 months to receive the full benefit of this medication.

Tell your doctor if your condition persists or worsens.

A good point well-made Suzan ...Ive been on Enbril for four years and picked-up any infection on the block....Never used to suffer with cold etc.....Last chest infection ,after a heavy cold left ,still persists today ...to the point where GP prescribed an Inhaler.......Shortness of breath come and goes with no idea if its long term.....
All a question of balance I suppose...If you had seen me before Enbril......Just as handsome,stunning wit,but less mobile .........xxxxx;)

Thank you Suzan, good info. Tony, glad to hear that it helped you, a bit of insperation for me to think about until I use it. I have read some of your posts. you are quite witty, as well as quick witted. with all of that and your stunning looks u need to vacation with me in the states. You would be a women killer 4 sure, i don't mind the left overs but my wife would. lol
At this point i am just about ready to try anything to control the pain. It affects my family and the people around me so I really hate it. Just so all u UK peeps know, I am 5 hours behind u on the clock. I have heard that some of you foreigners aren't too bright so that is all the fingers on one hand or all of the toes on one foot. lol I know i will pay for that one. Don't be shy, slam me right back:P . I am also on a new NSAID but it hasn't had time to start working if it works at all.
I am amazed at other peoples strength and tenacity. I admire them. Thanks to all for making me feel welcome. Mark