Re: The Long Road To Confirming Chrug

My story- started out with asthma that seemed to really get worse around the age of 18....played college level tennis inspite of the severe asthma. My asthma continued to get worse and over the years was put on inhaler at around age 35......then Severent until about age 42, neither seemed to really help before, during or after playing sports. Asthma, fatigue and sleep became more and more difficult at about age 46.....night sweats were bad, my PCP had no clue was to what was going on with me. I started having fatigue so bad that I final ordered a body CT scan myself since my PCP wanted to put me on blood pressure meds and Crestor as a solution. The CT scan showed multiple thin wall cysts in the lower left lobe of my lung from 2cm to 4cm in size.....started coughing up blood at age 47 every month.....six months later the thin wall cysts spread also to my upper left lobe of my lung....breathlessness and fatigue was terrible. It became so bad that when I fly on airplanes for business travel, I could not breath very well when the airplane pressurized the cabin....it forced air into the linings of my lungs from the cyst damage making it impossible to inflate my lungs with air.....the cysts spread to my right lung involving all three lobes. I went to the MAYO and they thought it might be a bacterial infection in a capillary of my lung......vision in my eyes and severe leg pain in my calf's of my legs....i would get strange round purple dots under the skin usually in a string of about 5 to 8 that would last 2 to 4 weeks with pain so bad that I could not go up the stairs of my home. The breathing, fatigue, night sweats continued....as a last resort, I was put on Vyannse 70mg which really really helped with fatigue and work. My eye sight was affected with my vision becoming blurry in trying to work on my PC or watch TV......I my cardo would say you can get air into lungs but not into your body, my lung specialist would say it's not your lungs even though you have cysts.....they all were right and wrong.....it was inflammation from within the blood vessels....that's why normal asthma drugs did not work. At National Jewish they found the most significant clue, I did not react to the test that they have you inhale stuff to cause asthma.....again it was triggered within the blood vessels the inflammation. They narrowed it down Srogren's, Chrugs or Sarcoidosis......my TSH level went up 8.2 due to the inflammation of the thyroid, at age 50 it started attacking my intestine's with monthly trips to the Doctor for steriods......the lung cysts after three years of hell all of sudden just stopped and disappeared.....for about 6 to 12 months things calmed down then it came back attacking my nerve and motor functions in my legs, ankles, feet and toes.....then my the joints in my shoulders and now I have a constant loud ringing my left ear with little control of being able to filter sound....it like putting a microphone on full blast into my ear.....it has attacked the nerve in my left ear.....my inflammation starts to really flare up I get a circle on my left side of my face of raised purple rash and my neck is scale red purple color.... Finally after about of 8- years of hell.....i was confirmed with Chrug and possible overlapping with Sjorgen's, not sure it really matters. I'm stage III with the disorder..I'm taking Vyvannse 70mg, Prediscone 10mg daily and plaguenil 600mg daily to suppress my immune system...so far this seems to have helped knock it down about 50% daily so far......when it flares my steroid dosage is increased to 25mg.....I have an MRI scheduled of my brain next week to understand the impact of the inflammation to the lining of brain. Any recommendations of positive reactions to drugs in stage III would be appreciated.....thanks.
mttulsa mttulsa
51-55, M
1 Response May 13, 2012

Hi. I am a 51 year old female who has just been diagnosed with css. after being sick for 9 weeks. They diagnosed influenza a, but symptons wouldn't go away. I had all the classic symptons fever, night sweats, fatigue, numbness in the hands and feet, joint pain, coughing up blood. when they admitted me into hospital my kidneys were failing. They are still only functioning at 16%. I am currently on 60mg of prednisilone and having cyclophosphomide. This treatment is working for my lungs and bowel, but kidneys haven't responded.
Kathy