New to Forum but not new to disease

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New Member

Date Joined Jul 2011
Total Posts : 2
   Posted 7/4/2011 3:20 PM (GMT -6)   
okay so i am new to the forum but not new to the disease.
I was diagnosed with Lupus, Scleroderma, Raynauds in March of 2002. I took celebrex, plaquenil, and steriods to begin with. I then had issues with the celebrex skull and stopped it and began to take Humira. The Lupus went into remission for about 2 years. In 2005 i got pregnant with a beautiful little boy and the pregnancy was great UNTIL i was faced with a high stress situation. He was born 7 weeks early and stayed in NICU for 26 days. He is a healthy strong willed little boy now. i then didnt have any major issues with the Lupus until March 2010. I woke up one morning and had a extremely bad pain on my left side in the area of my diaphram. I went to an urgent care clinic and they treated it for pneumonia even though there was nothing seen in my lungs. Since this my breathing has gotten worse and i am oxygen dependent when i walk and sleep. They are questioning a shrinking lung syndrome, it was pluerisy at one point. I feel like the pain is in my shoulder and spine not my lungs. But to walk quickly i become out of breath quickly. I would love to have another child but need my body to cooperate and get back to its way of normal. I have seen a pulmonary dr, GI, cardiologist, blood doctor and no one can tell me what is wrong. Has anyone had any of these problems or any advice.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 7/9/2011 3:11 PM (GMT -6)   
Hi! and welcome,
I am so glad you found this forum. Hope you have had a good summer holiday week. When I first joined, I read lots of old topic threads and learned so much. What the biggest blessing has been, is finding friends here that understand how sick we feel, and have so much in common with. I was diagnosed with asthma years before I was dx. with lupus, and it has been a really tough few months, breathingwise. And, I understand your wish for another child, too. I have two beautiful healthy daughters, but then had a stillborn son and Group B strep, that led into 5 8 wk miscarriages from APS. I had a hard time accepting that my autoimmune illness would prevent me from having more children, and even went to NYC to consult a world renowned infertility specialist. You've seen alot of drs, too. Have you ever had a CT or MRI? And, I would strongly urge you to consult a high risk OB who has had lots of experience treating pts with autoimmune diseases. If you live near a big city with a teaching hospital, that would be a good place to start. You need to be as healthy as possible before getting pregnant and make sure any meds you need to take won't hurt the babe. And, with a hug, and please forgive me, I need to share my biggest regret is that I was so focused on what I had lost, and what I wanted, that for far too long I couldn't see the blessings I had been given. Your son and your husband need you muchly.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.
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