Sarcoidosis

[livingwith]

Hi, I’m Cynthia and I have Sarcoidosis sarc is a autoimmune diease inw hich Lypmh Nodes can develop in the major organs and muskeltal parts of the body, I don’t like when i go into a flare(where the body is in pain, fever,fatique.) But I do know that with the attitude that I live with now is like I have to stay strong for my kids, husband and me.
I continue to live in normal setting which allows me to do the things I love such as going on trips, going to plays,concerts and just do...Read the full article

[caper]

hi...i was just diagnoised with sarcoidsis.I am 41,they told me at first it was lung cancer,they scared the S*** out of me.I spent 3 weeks in the hospital before they were able to rule everything out and tell me for sure what i had.I had been sick since feb.09...an awlful cough,sinus infections and feeling awlful. Finally on June 11th of this i couldn't take it any more...i was having a hard time breathing also then that morning i woke up with a red hot rash on both my arms.I went back to my doc,boy did things change in a hurry,he sent me for blood work and x-rays.The x-rays showed a large mass in my lungs.By Sunday i was covered in the rash from head to toe ,could hardly breath,and was coughing like a nut--to the point i would wet myself every time i coughed.I was sent to another bigger hospital then.I have been home now since the 3rd of july.I was put in 50mg of predisone and have been trying to wean of it ever since but every time i try the rash reappears and they tell me this is a flare up and up my predisone again.I have had 2 of them since i got home,now they are telling me they are going to change my meds.I do feel better than I did when i was in the hospital but it am so TIRED.I can not do anything and i am panting for air.It gets very maddening at times when i am very used to being a very busy person and i am unable to do this.I was wondering how are you feeling now and if you are able to work?I am a waitress but i am scared i might not be able to go back to this...Are you on predisone ? How many flares up have you had...and do you have any other side effects going on?I was very glad to see your posting..I have not been able to talk to anybody else that has this....It is nice to get to talk to someone that knows what you are going through.....Thank you in advance for reading this.....Any sort of comments i would love to hear......Thanks again...Donna

[mslucky]

I was diagnosed with sarcoidosis sept 1999. The first time was the worst because I was too sick to take chargeof my own treatment. I seem to always have flare ups in sept. Last one in about four years ago. This is a chronic disease but I have managed to continue to work. Though I am having a flare up now I am still on methotrexate and an inhaler. I think it was caused by having the flu last week. this may be my down time but I wiil be back up soon. Take care of yourself, Get plenty of rest and when you can breathe always exercise. Let me know how you are, I cant believe it been 10 yrs. Paula

[faith123]

Hi

My name is Brenda, new to the forum. I was diagnoised in 1995, sarcoid activite the whole time. I've been on steroids since 1995. The drs put me on Methotrexate, no luck so back to the steroids. How is the Methotrexate working for you? Best wishes Brenda

[mslucky]

I was sorry to hear that methotrexate didnt work for you, I hate being on steroids, drives me crazy and my blood pressure goes sky high. What steroids do you take? they always put me on prednisone. I hope to go back to work this week, not sure for how long. I am a nurse and work in the hospital so I am subject to pick up a lot of bugs. I'll pray for you and you pray for me, watch God change things. Paula

[faith123]

Hi

I've been on predisone for 14 years, sarcoid is always active and moving to different parts of my body. Right now Im on 20 mgs, because I've been on steroid so long, the drs have to increase the dosage. Today I will start 40 mgs. Right now Im out of work because Im dealing with the worst flare-up I have had in years. There is no way I can work on 40 mgs. When I was on this dosage before I had to monitor my blood pressures and my sugar level. The steroids was causing both levels to go up and down and I have insomnia really bad and Im always tired. Heard of a drug called Infliximab? Drs want to try this drug. I been researching this drug, dont know, have to pray about it. Best wishes Brenda