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Information on sarcoidosis and/or Wegener's granulomatosis

Posted: Jul 14, 2014

Does anyone know of a friend or relative diagnosed with the above? My daughter has been under the care of lung, RA and FP docs for the above. She started out with bleeding in the lungs on vacation. She was treated with high-dose steroids for almost 6 months and then tapered to off. All the usual blood tests for sarcoidosis and Wegener's have been done and still nothing showing positive except a slightly elevated RA factor. She had a coughing spell last week with fatigue and went to docs again. They did blood work and gave her Z-Pak and prednisone to get back on just in case it was a bacterial infection. She had coughing again with green sputum but that has cleared up. She just turned 36 years and is so active. Her regular lung doctor plus another lung doctor in group want to see her at the end of July. One doc stated the only way to really tell what is going on is to do a lung biopsy. Then discussed chemotherapy to put in remission. I am so scared for her. The weird thing is that everytime they do blood work everything comes back negative or within normal limits. Sometimes she will have a lymph node swell in her armpit, neck or groin. The syjptoms for both diseases are so similar. Her RA doctor though she might have lupus. They have run so many blood tests for autoimmune disease it is unreal. To look at her you would not think she was sick at all. I am such a worry wart since being in this line of work we all know just too much sometimes for our own good. I just broke down on her last week. I could not help it. I told her she may have to be on steroids for the rest of her life at a low dose. She used to be a drug rep but now has the job of her dreams. Just got marriedm, built a beautiful home and she has the greatest husband ever. Just starting her life really. Her husband said he was praying that they could have kids, but if it comes down to chemotherapy doctor advised against that. I told her to adopt and it was not worth putting her life in danger with stress of being pregnant even though information states that women do have successful pregnancies but after giving birth is when they might have trouble. With that in mind, I told my son-in-law please talk to all doctors involved before planning on a family. There are too many little kids that need a good home and they could adopt. He agreed. I am in a panic mode and I try not to think about it but it is always at the back of my mind daily. I just cannot help but worry. I am leaning towards sarcoidosis. The newest lung doc looked again at her chest x-ray and stated she boted something about her bronchus but has not seen my daughter in followup yet (end of July). I know on previous x-ray and bronch, when was in the hospital the first time, she had a granuloma in her lung that was biopsied in the left lobe and it came back benign. We live in East Tenn which is known for high allergy problems and it is very common to have these. I also have these in both lungs. I am sorry for rambling on, but I was just curious if anyone knew of someone with dealing with the above symptoms. Keep us in your prayers.

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Autoimmune disease - CAB

[ In Reply To ..]
I have sarcoidosis. It took them years to diagnosis it. I have it in my eyes and lungs. I had symptoms start when I was 34 right after my first baby. Your daughter has different symptoms than I did, my symptoms started in my eyes and I do have granulomas in my lungs, but my lungs do not bother me. Has she been on methotrexate? They put me on that for a while, supposed to slow down symptoms in lungs and eyes. I remember I used to have severe coughing spells when I was about 26, but no blood. It lasted for a few months then went away. I think being pregnant brought out the autoimmune disease in me and my body sensed a foreign body and started attacking itself. I was very tired and ran a low grade temp for 9 months. I felt like I was going to get the flu, but never developed it. I felt terrible but had to take care of a newborn. My eyes are messed up now, I had cataract surgery, shots in eyes all the time, glaucoma, blind in left eye now. Lungs do not give me trouble unless it is very cold out. What city does your daughter live> There is a great sarcoidosis doc at UC Health named Dr. Baughman. It takes a while to get diagnosed. Have your daughter ask about methotrexate. I still got pregnant with sarcoidosis. Tell your daughter to not give up and keep trying to get a diagnosis and treatment.

sarcoidosis - CAB

[ In Reply To ..]
Just a couple more things, yes a lung biopsy will tell the doc a lot of things, I had one it is nothing. Also if your daughter goes on methotrexate, she cannot get pregnant at all it causes birth defects. I don't know how long you have to be off of it to try to get pregnant. My doc was real paranoid about this.

Information on sarcoidosis and/or Wegener's granulomatosis - Vera

[ In Reply To ..]
i am so glad to hear back from someone that has experience with this. We live in Knoxville, Tenn. She had a bronchoscopy last year when bleeding started when she was in Aruba. When they got back they went straight to the hospital and x-ray showed what they thought was pneumonia. Gave antibiotics but she did not get batter and went back and this time they diagnosed her with blood in 4 of her 5 lobs. Bronc was done and it showed nothing but a granuloma that was brown and biopsy was benign.

She was on steroids for months and then eventually weaned off. She has has been married less than a year and she and hubby want to start a family this fall. I told them to get the green light from all docs before trying. Lung doc did mention last year to do a lung biopsy of tissue once she was off of prednisone to get a definite diagnosis. She is under the care of FP, Lung doc and RA doc. All the tests have come back negative but something is definitely going on. Lung doc mentioned chemo last year. I hope they listen to him. I told daughter she could adopt or find a surrogate. She has worked as a sales rep for chemotherapy company so she knows what it can do. I would just as soon she does not get pregnant but I cannot control that. I hope they listen to me. Autoimmune disease does run in the family with daughter and niece having some type of certain antibodies that I can never remember. Niece has Protein C and Protein S and 1 or 2 more and had to have daily injections so she would not have a miscarriage of twins. She lost 1 baby early on before they did genetic testing on fetus. My daughter had to have knee surgery before this all started and had to take daily heparin shots for a week or two. Just a few weeks later she started bleeding in the lungs. FP doctor said this was too far out from surgery but I have my doubts. At the end of July she has an appointment with lung doc again and this time I am going with her once more. I worry so much about her and sometimes she does not tell me what is going on, but I told her not to hide anything from me. I would find out eventually. To look at daughter one would never know she had this. Thanks for your help. It does help to talk to someone that knows what they are talking about. She is such an active person. She has a great job but has to travel a lot. Eventually I know this might come to her cutting back on work and so much travel. Hope it does not. Thanks for help.

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