Hello WG Members,
The following is my husband’s life changing story in his own words:

I didn’t know it at the time but my sickness began on January 3, 2014 shortly after everyone at my job got really sick with the flu. I didn’t get sick like everyone else but I did get something. It started in the middle of a flight from Fort Myers FL to Atlantic City NJ. I had a high fever and very stuffy nose. I was sick the whole time that I was there. I then flew to Mexico two weeks later. I was still sick and came back even sicker. While there, I went to several ENT doctors that prescribed Prednisone, Vitamin C, Antibiotics and Saline for my nose. The lining of my nose was full of blisters and sometimes I would stain the pillow with blood from my nose. My nose was swollen shut. I could barely breathe. One of the ENT doctors tried to put a camera up my nose but it wouldn’t go through because it was swollen shut. When I came back, I went to an ENT doctor in Fort Myers. He did the same procedure and prescribed me Prednisone and Antibiotics. It didn’t work. When I went back, he did a CT scan of my face. It showed unexplained inflammation above and below my eyes. I continued to go to him until March 2014. All of a sudden everything went back to normal or so I thought. When it returned I didn’t want to go back to him because one day I told him that I had a fever every single night and night sweats every single night. When I say night sweats, I mean soaking night sweats and high fevers of 102 and above. The ENT shook it off and said that I probably had a cold.

I felt normal from April 2014 thru mid-June 2014. All of a sudden I got a lump behind my right ear. So I went to the walk-in urgent care (7/7/14). I was prescribed Prednisone and Antibiotics again. The antibiotics didn’t get rid of anything. So I went to a different walk-in urgent care (7/14/14). The doctor who took care of me that day was a caring doctor. He prescribed Antibiotics. He referred me to a new ENT doctor. He sent me next door to his office to get a CT Neck with Intravenous Contrast. The result was: There is a symmetric enlargement and heterogeneous enhancement of the right parotid gland relative to the left.

I went to the new ENT doctor (7/16/14). The ENT prescribed Prednisone and Antibiotics. I still didn’t get better. I returned to the ENT (7/23/14). I notified him that I had experienced extreme pain on the lump behind my right ear. I also experienced a sharp pain on my chest through to my back shortly after seeing him for the first time. He prescribed Antibiotics and Prednisone again.

I was getting worse instead of better. The high fevers and night sweats continued. I was getting shortness of breath and weakness of the knees. I would come home from work out of breath, weak and very tired. I went back to the walk-in urgent care (8/14/14). They did a chest x-ray. They diagnosed me with Pneumonia and told me that I might have TB. They urged me to check myself in to the hospital ASAP. On 8/15/14 I checked myself in to the hospital. I was placed in a quarantine room. They ran every test under the sun. Everything came up negative. So the next step was to inhale fumes in order to cough up phlegm but the results came up negative. So the next step was a Bronchoscopy (8/19/14) which showed minimal phlegm and negative for whatever they checked it for. That’s when the infectious disease doctor had them check me for WG. So the next step was a Thoracoscopy (8/21/14). They had to cut out two pieces of my lung for biopsy. That’s also when they checked and my blood count showed a high level of Vasculitis. On 8/23/14 I was diagnosed with Wegener's Granulomatosis. I was given Antibiotics and 200mg of Prednisone via IV. My sugar level went sky high. So I was given insulin. I was given many other medicines as well. The lung doctor prescribed me 60mg of Prednisone when I left the hospital. I was in the hospital for 12 long days.

On 9/25/14 I saw my rheumatologist for the first time shortly after my lung doctor contacted them and asked them why they haven’t called me yet for an appointment. The rheumatologist prescribed Methotrexate 25mg/ml (9/29/14). It was a shot once a week. I took Methotrexate a total of 4 shots. It made me feel extreme pain from my knees down in the calf muscle. I also had a burning sensation on the bottom of my feet. I felt very weak all over. My blood pressure was sky high but I wasn’t aware that it was sky high. Therefore, I had no symptoms to notify me that I had high blood pressure. So the rheumatologist discontinued the Methotrexate and advised me to cut back on Prednisone as follows:
30 mg daily for 2 weeks (12/1-12/15)
27.5 mg daily for 2 weeks (12/16-12/30)
25 mg daily for 2 weeks (12/31-1/14)*
*Lung doctor said I was in remission (1/2/15). From January – February 2015 I felt normal.
22.5 mg daily for 2 weeks (1/15-1/29)
20 mg daily for 2 weeks (1/30-2/12)
17.5 mg daily for 2 weeks (2/13-2/27)
15 mg daily for 2 weeks (2/28-3/14)**
**Dry cough and fever began (3/7/15).
12.5 mg daily for 2 weeks (3/15-4/5)***
***I got worse with coughing, fever and full body discomfort. On 3/31 and 4/6 went to the primary doctor and was advised to go to ER due to chest x-ray but I decided to see my lung doctor instead.
10 mg daily for 2 weeks (4/6-4/8)****
****I got even worse with coughing up phlegm stained with blood, high fever and full body discomfort. I wasn’t able to complete 2 weeks of 10 mg.
(4/8/15) Lung doctor visit resulted in Prednisone to be changed to 60mg which I started on 4/9/15.
(5/6/15) Lung doctor visit resulted in Prednisone to continue at 60mg. He added Bactrim (antibiotic) to be taken MWF every week.
(6/5/15) Lung doctor visit resulted in Prednisone to continue at 60 mg and Bactrim to continue MWF every week. Lung x-ray is still the same as last month’s x-ray. No improvement but not worse neither. Prednisone is causing my blood pressure to rise along with my glucose level to rise. Therefore, the lung doctor prescribed Enalapril 20mg (blood pressure), Metformin 500 mg 2x per day and Glyburide 2.5 mg. I told him that I’m willing to give Methotrexate another try. He told me to go ahead and try it two times if I still have some left at home. If I can handle it better this time around, he said I can call him and he will prescribe it again for me. I asked him if the rheumatologist communicates with him about me. He said he hasn’t received any notes from him. I’ll see him again in 6 weeks.

Prednisone makes me feel very tired. I feel the need to rest constantly. The bottom of my feet gets really hot. When that happens I feel the need to raise them up on a foot stool. Then they get cold and I start to sweat all over.

Sincerely,
ThePowerCouple