My Neutrophils Count is "0" with Azathioprine, what should I do ?

I was diagnosed with Wegeners in April of 2012. Since that time I have had 29 rounds of Cytoxin infusions.4 of those sessions were 6 monthly infusions and 1 session was 4 infusions on a quarterly basis. I have also had 3 sessions of Rituxan infusions that occurred on a weekly basis. The infusions along with prednisone have put me into remission 3 times but the maintenance medications I was put on failed to keep me in remission. My ABSOLUTE NEUTROPHILS (white blood cell count)  tends to be on the high side. My last blood test showed it at 8646 when the normal level should be 1500-7800. The last several blood tests showed my Neutrophils levels (which make up the majority of white blood cells) between 77% and 93% My concern would be have you been misdiagnosed and may have something other than Wegners although I have read that steroids and chemo drugs such as Cytoxin can lower Neutrophils levels. You have only mentioned you have been on Cyclophosphamide for 4 months but not if it has been infusions or pill form and how often you are taking it. Maybe the doctors are not giving you the right dosage, I find it useful to keep track of all my blood work as I have a copy of every blood test since I was diagnosed. I see a Pulmonary specialist, Rheumatologist, Oncologist, and Nephrologist, all of whom I have a good relationship and who I can ask a lot of questions.

Hi Vidyasampath

Sounds like you have a much rougher time with this disease than me. Mine started with a terrible sinus infection, some minor nose bleeds, fatigue, loss of appetite and weight loss. Months prior to this I had a persistent cough. I had been seeing our regular family doctor all this time who was prescribing antibiotics for the sinus infection with little or no improvement. An ENT continued to prescribe antibiotics with the same ineffective results who then prescribed some steroids which seemed to alieve the sinus infection.  It was on Easter Sunday while at church when I felt extremely faint to the point I almost passed out. It only lasted a few minutes but taking my blood pressure about 45 minutes after the services showed it was extremely low so my wife convinced me to go to the emergency room to have it checked. My blood pressure had stabilized by that time but describing my symptoms to the attending physician he decided to a chest x-ray although all my other doctors said I had clear lungs with their examinations. He did not like the x-ray results so he ran a CAT Scan which showed lesions in my lungs. The pulmonary doctor I was referred to immediately recognized the lesions as Wegener’s and I was diagnosed with Limited Wegener's granulomatosis.

As I mentioned before I have just recently gone into remission for the 3rd time. The first time I was put on Methotrexate which only lasted a few months before a flare up and then the 2nd time I was given Cellcept which was also ineffective in preventing a flare up. This time I am going to continue Cytoxin infusions on a quarterly basis for a period of time and see if that helps. The flare ups were mainly identified by blood tests either by SED rate, ANCA-C or creatine levels as I have since experienced some kidney involvement which has responded well to the Cytoxin infusions.

I was unaware of Azathioprine as a treatment drug for Wegener’s as my research never ran across it and my doctors never mentioned it. It appears it has been shown effective for autoimmune diseases such as Wegener’s. I just read an article on it titled Azathioprine toxicity mimicking a relapse of Wegener's granulomatosis  https://academic.oup.com/rheumatology/article/40/7/831/1787981 .  From the article it looks like the patient experienced the direct opposite from what you experienced.

I was surprised to read that your doctor has reduced you to 5 mg of Prednisone so soon. With my last flare up which occurred in mid-April I was put on 60 mg and was just recently reduced to 10 mg which my Rheumatologist wants me to remain on for a period of time longer.

I hope your doctors can get control of your Neutrophils levels so you can get back on track for treating your Wegener’s. Hope you enjoy Thanksgiving and the upcoming Holidays.

Sounds good, i am sure the doctor is there to help you.