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Hi Luggie
I go by the name of Raven at the support group. I was diagnosised with sarcoid around 14 yrs. ago. I had went into the hospital for some surg.and when they did my chest x-ray they discovered a spot on my lungs.
I had a biospy and they did some lab work and told me I had sarc. I was knew what it was because my older sister was diagnosised 4 yrs before me.
At first I was treated with low doses of pred. As time went on and I got older the sarc became worst. I have had 3 lasar surg on my right eye and eventually I had to have a 4th surg and a vail was put in my right eye to control the pressure are I was told I would go blind in that eye.
I had problems with my lungs again to the point where I could not breath. I was put on high doses of pred starting at 80 and going down. Everytime my doctor tried to take me off the pred I would get sick again . He finally told me there was nothing else he could do for me so he referred me to Dr Baughman as he referred to as the sarcoid doctor.
I have been seeing Dr Baughman for about 8 or 9 yrs now. He gave me metho. I was seeing him every wk.
After about 4 yrs. of taking the metho. I stopped going. I lasted about 14 mo. I became very ill and had to go to the emerg room. I had to go back to Dr. Baughman he started me back on the metho. About 6 mo later I started having very bad headache. I had an MRI done and was told that the I had neuro sarc.
I was referred to his partner and started infusion. I was taking cytoxin every wk for about a mo are 2. Then every 3 wks. I did this for about 2 yrs are so. I was put on remicade along with the cytoxin. I did this for about 3 mo. Then I just had the remicade. This was working better then the cytoxin. I did this for over a yr the remicade. I was told by my insurance co that this was not approved for sarc that it was experimental so the stop paying for it and are trying to get me to reimbruse them.
My doctor had no choice but to put me back on the cytoxin. My doctors wrote letters and a mo later after being taken off the remicade I had a seizure. I have a lawyer but it is not looking good.
I am back on the cytoxin. I take infusion every 3 wks sometimes 2 wks sometimes 4 wks depending on how I am doing. I have lab work done 1 day before my infusion.
I was told that I am a chronic sarcoid patient and that I will probably have to take some form of treatment the rest of my life. That is why I pray that they find the answer or problem.
I know this is long but I did not tell everything. Thank you and I hope I can help someone else that maybe new to this. I love your support group and I think it is great because we don't have a support group here in Cincinnati.
Take care and keep up the good work.
Grace and Peace
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