Nasal Wegeners diagnosed in August 2013 . Losing confidence in the recent past.

[adith]

Hello Forum ,

I am from Bangalore , India and i am here on behalf of my mother looking to get some opinions and expertise from fellow members.

Brief Case history of my mother (3 years since diagnosed)

Sex: Female
Age : 53
Weight : 79 kgs
Height : 5 feet 3

1> Ear pain and infection back in june 2011 . She had lost complete hearing ability along with a disturbing noise in the ears(both) . Tried various antibiotics from ENT , did not seem to solve the issue. Ent later wanted to investigate the case further and did a biopsy from her nose clog. At this point it was diagnosed as Nasal Wegener . Thankfully the diagnosis was quite early on and then started the journey of Wegeners in the month of august 2013.

2> Rheumatologist started with the appropriate treatment of 40 mg prednisone with MMF (Mycophenolate Mofetil) . She got her hearing ability completely restored without any noise in the ear. About 1 month she continued with the dosage and then started the taper of prednisone and increased MMF .

3> The tapering of Prednisone reduced weekly and eventually when the dosage became low enough the rheumatologist switched to another medicine Methotrexate . Up until this point my mother was doing healthy with all the ear infection and noise issue solved.
Methotrexate when tapered to 2mg per day she started having degradation in her eye sight. Immediately we consulted an ophthalmologist and he suggested Intravenous Steroid therapy instead of tablets. She recovered her eye sight to the extent of 20 percent.

4> We met another rheumatologist who started my mother on a series of Infusions. Each infusion consisted of 500 mg of Cyclophosphamide and 6 such infusions were done once every fortnight. At this point my mother was doing much better and eye sight had more improvement with continued usage of prednisone 10 mg /per day and also added another tablet called Azaron 50mg per day for maintainence. Along these lines at some point prednisone became 5mg per day while azaron became 150 mg/ day .

5> With prednisone 5mg /day and azaron 150 mg/ day , CRP increased and hence prednisone dosage increased again to 10mg / day and Azaron 200 mg/day. My mother continued being healthy for about 6 months with the same 10mg /day prednisone and 200 mg of Azaron .

6> For 2 months the tapering of Prednisone began again with continued usage of azaron 200 mg/ day. Again when the tapering came down to 5mg prednisone , she started having shortness of breath and loud sound of breathing and severe fatigue. Again prednisone was stepped up to 10mg/day . Lung xray and nose xray was done and suspected infection of trachea . Azaron was stopped and replaced with MMF again of 1000mg/ day. CRP levels did not show improvement and hence another step up of prednisone to 20 mg and MMF 2000mg/ day was suggested. Another tablet Folitrax 5mg per week was also recommended .

At this point my mother complains of following persistent issues

a> Shortness of breath , chest pain

b> Severe loss of energy , fatigue and usual swelling of face.

c> Throat pain, cough , continuous running nose , clogging etc.

d> Watery eyes , loud breathing sound (loud enough that everybody around can easily recognise)

Questions i have regarding my mother case

1> Can her breathing ease? Will the sound of her breathing reduce ??

2> Can she regain her energy ??? (Relatively acceptable energy and enthusiasm)

3> Is she really deteriorating or is it the new NORMAL???

4> Can she get a higher dose of prednisone and do better ??? Is it really required to taper when every single time prednisone was tapered she got difficulties.

5> Can more infusions be done????

Looking forward to opinions and suggestions from fellow members and survivors and doctors for advice.

Thanks in advance.