Wegener's granulomatosis

Allergies, blood and immune system
1

I was taken very ill early this year, suffering from night sweats, high temperature, bloody discharge from nose including crusting, coughing up bloody sputum, body rash and a general feeling of fatigue. My bp was very high and I had a job with breathing. My gp sent me to various specialist consultants and eventually I was rushed to hospital with suspected pneumonia. On arrival at the hospital, I was given massive doses of strong anti-biotics intravenously, but my conditioned worsened. The doctors then thought I was suffering from an immune disease and luckily, I was seen by a visiting renal consultant who immediately diagnosed Wegener's granulomatosis and transferred me as an emergency, to the renal unit at St Helier Hospital in Carshalton.

At St Helier, I was given massive doses of steroids followed by cyclophosphamide both given intravenously and I felt slightly better within 24 hours. This treatment was followed by three sessions of plasma exchange by dialysis and then a blood transfusion. I have had a total of six sessions of intravenous cyclophosphamide plus various oral drugs in cluding prednisolone, co-trimoxazole, alendronic acid, azathioprine, mycophenolate mofetil and adcal-D3 tablets. I was in hospital for a total of just under 6-weeks and have now been discharged for about 6-months. I attend the vasculitis clinic about every two weeks or so and the doctors are very pleased with my progress and I am going towards remission. I am male and 83 years of age and apart from occasional tired spells, am keeping well. The treatment I have and am receiving at St Helier Hospital under the NHS, has been absolutely first class and I have nothing but praise for this hospital and the medical staff, to whom I thank from the bottom of my heart for saving my life.

2

Hello. Thank you for the interesting post. I am curious to know how your renal consultant confirmed the Wegener diagnosis. Was a biopsy performed?

3

Hi ron1 - I have just read your response to my notice of 5th December 2009! No biopsy was performed.

I think the renal consultant had lots of experience with Wegener's and she hoped to perform a biopsy but I

was so seriously ill that she decided to treat me for Wegener's immediately. I had a relapse last year and ended up in St Helier hospital once again. The relapse was due too quickly reducing the medication! I was in St.

Helier about 6 weeks, where they gave me massive doses of steroids intravenously and when I was discharged I was given high doses orally of steroids, mycophenolate mofetil together with a weekly dose of Alendronic Acid.

I have to take Adcal tablets every lunch time. the steroid dose has been reduced to 5mg per day and it is a

maintenance dose which I have to continue for the rest of my life. I saw the consultant last week & he told me I was going towards remission.

4

Thanks for the reply Mo. Best of luck with your ongoing recovery. I was curious for information as my son was diagnosed with WG in November 2012, and January was a tough month for us. He eventually recovered with similar treatment involving prednisone and rituximab / cyclophosphamide infusions, plus a number of plasmapheresis sessions. He underwent dialysis for a further five months, but happily this is not needed now. His age helped him recover (he is 19), so I really admire your strength and fortitude to tackle this in your 80's. Keep soldiering on! You are also lucky to have the NHS involved, the doctors bills here in the US total well over a million dollars, most covered by insurance fortunately.

5

Thanks for your kind thoughts! Wish your son all the best from a fellow sufferer albeit he has youth on his side. Regards to you both and I hope the treatment works - Mo Grant

6

hello,

I am a 52 year odl mother with a house still full of my 3 boys and my wonderful husband of 32 years.

One of the son's was born the year I turned 35. He is 16 and very active. I love to play with him and

after the past few years it's normal for me to be in bed most of the time, leaving my husband to go to

the football games and soccer games alone.

In 2010 I was diagnosed with a muscle dease (cant spell) called mitochondrial myopathy. It causes

muscle pain, flu like systems,fituge ect..

In 2011 my gp took a ct scan of chest to pelvis and found I had swollen lemp noids and granula. If he

told me this I must have been out to lunch, because I can't remember that discussion. I started having

stomach pain and pain in the pelvic area. So he did another scan. It showed no increase in growth and'

he would watch it. Things only got worse, I was so sick when I saw him and he sent me to my muscle

distraphy (cant spell) dr. I saw the nurse practician

7

Hi Dorothy

Thank you for your e-mail which I appreciate. My word, you have been in the wars and I only hope you get well again. As for my illness, Wegener's Granulomatosis, it is under control with the drugs that the Consultant the has prescribed. In fact, last time I saw him he advised me that the disease was in remission, but I have to stay on the drugs for the rest of my life. I will 88 years of age on May 2nd this year, so I have had a good innings!

It was good to hear from you and I hope you conquer your disease.

Sincerely

Mo Grant (My full name is Maurice Grant Baguley but I use the contracted form of Mo Grant for convenience)

8

Thank you so much!

I am from the south and we tell beginning to end but I was cut off. My problem is my doctor never gave me

any information about this daese, I pulled up my medical record on-line and there it was, so I clicked on it

all this information hit me like a tone of bricks, and also explained a lot of problems I have had for a while.

The main question I have is what doctor should I see for this? I will be seeing Dr Vada he is my Muscular

Distrophy doctor in June and I hope he will shine some light on this. I have all these systems I am not on

any of the medications. Have you had any stomach problems? My sinus drain and I have puss pockets on my tonsils. I have told my gp and there is no response. Two month ago I went in with my face,ear,

teeth and head killing me. I want antibiotics steroids. Two weeks ago I have to call and ask for more

antibiotic because the pain is back.

I do not want to complain (of course you don't) but ignorance is not bliss!

Mo 88 in May sounds wonderful. My mother died at 52 same age as me now. I loved her so much.

I just want to live forever!

Thank you

Dorothy