SARCOIDOSIS

[Firehoney4]

I'm an NJ firefighter with Sarcoidosis. I'm would like to contact any other firefighters who have this disease. I have found articles that indicate firefighters and nurses are susceptible. Please contact me with any info you may have about your condition and treatment. I'd rather not take Steriods if I can avoid it. Thanks!

Please contact me at Firehoney4@aol.com

[nsfirechap]

Hi,
I am a retired Air Fore Firefighter, now a volunteer-was diognosed with Stage 1 pulmonary sarcoidosis last January-has been a long haul for me-am on prednason-it helps-made a big difference. I'll email you with more details.
Lots of good web sites on sarcoid-got more info there than fro my docs-big thing is Sarcoid is still quite a mystery disease-no know causes'
Am also originally from Jersey-BAyonne.
Hang in there.

Jeff


[This message has been edited by nsfirechap (edited September 01, 2000).]

[enoble11]

I am a Captian in southern California and was diagnosed about 4 years ago. We still have a pending court case, but if you e-mail, I will be happy to talk to you about it.

Ed

[Firehoney4]

Just an update on my end. I managed to stay off steriods with the help of acupucnture. It was in remission for almost 3 years. Unfortunately, Stress can give Sarcoid a nudge, so it's been back for a while now. It's not responding to the acupuncture treatments anymore. Stress aggrivates the Sarcoid which aggrivates my Herniated disks, which aggrivates Me, which aggrivates the Sarcoid and round and round andn round.

My new pulmonary specialist (in my lungs mildly the last 2 years) is aggressive and has ordered all kinds of tests. My ACE levels were high (80). She gave me 3 weeks of steriods which dropped the level to 20, but I felt like hell. Stopped the steriods. Tried Plaquinel which helped with the muscle aches and pains for a few weeks, but didn't last. Now I'm on Methotrexate to see what happens. Of course she did blood work first and found my liver is having issues (probably because of the sarcoid). The Methotrexate will potentially make that worse. Only going to do it for a month to see what happens.

These meds are just a waste of time and money. Wish we could just replace parts like on my truck or computer. Would be so much easier! Pop the old one out; pop a new or refurbed part in!

Has anyone else had any helpful treatments?

[fdmed7]

I have sarcoid, pulmonary type 3-4, sarcoid of the liver, optic nerve, joints, skin. My doctors state it is from the FD, but said it would be tought o prove I was wondering if any of you guys have had any luck.

50 mg pred for 18months, plaqunil, now methotrexate. Still suffering, almost 3 years!