In 1988 I went to my G.P. with joint pains which fluctuated around my body. When I booked the appointment I had pain in my neck and shoulders, by the time I saw him it was in my knees and wrists! The pain was put down to my being pregnant (with my second child), hormones etc. - advice, take pain killers. I would not take any because of the baby, so quickly the pain became unbearable.
A week later I was unable to drive myself to the doctors. My husband took me and demanded action, an appointment was made for the next day to see a general medical consultant at my local hospital in Crewe. I was admitted immediately as by now I had many other symptoms and my breathing was affected. From there I was ambulanced to Wythenshawe hospital to see a chest consultant. After 10 days I was moved to Withington under the care of the rheumatology consultant.
After a week, Wegener's Granulomatosis was diagnosed. I now realise how lucky I was to have been diagonosed so quickly. It did not feel quick at the time. Because of the drug treatment I lost the baby, but I know my baby probably saved my life, certainly the quality of life I have now due to the quick diagnosis and I will never forget that.
Cyclophosphamide and prednisolone did the trick. A month later I was home, back to my husband and 2 year old daughter. Over the next few years, I had a few hiccups but nothing too bad. I continued on a high dose of steroids and cyclo' or azathioprine and managed to work part time and look after my daughter as sadly my marriage did not last. Another casualty of long term illness!
In 1995 I had a very bad relapse despite telling the docs. I felt unwell at follow up appointments throughout the year. I ended up in hospital for 4 months! I was not responding to the normal treatment and was critically ill. The WG attacked my bowel, stomach, joints, lungs, eyes, ulcers in the mouth and I had other vasculitis symptoms. A renal consultant Dr. Venning was brought in (despite me having no kidney involvement at all, nor thankfully since) who suggested 3 plasma exchanges. 15 sessions later! I was back on the mend but it was slow progress.
It was during this period that a nurse told my family about the 'Stuart Strange Trust'. So little was known then and the information provided by them helped enormously. Thank you.
The I.V. Cyclo went from weekly to fortnightly to monthly and finally to every 6 weeks. I convalesced having given up work, but slowly joined in local activities etc. and eventually was busy as ever. I was taking all the usual tablets to combat side effects e.g. HRT, calcichew D forte, losac, iron, folic acid.
3 years later I started my college course. By now I was on 12 weekly intervals and in between times feeling really great. But in Jan 1999 I began to get some joint pains and partially lost my hearing. In the July I was given a hearing aid which was great. I went back to 6 weekly intervals now including I.V. Immunoglobin.
During this time I realised my nose had never been right e.g. loss of sense of smell, crusting, hemorrhages, blocked. I had always put it down to the fact that I was born with a cleft palate and lip. I now know the problems WG cause. Co-trimoxazole and glycerin drops helped. I do not have the classic 'saddle nose' look, I think because of surgery to rebuild my nose as a child and teenager.
2 years later and I had a second hearing aid gratefully received. By now I was on Methotrexate as I had over time had 47 IV cyclophosphamide infusions!
A root filling on the 23rd Dec 2004 led to me being admitted to hospital on Christmas Day with facial swelling and fever which lasted a week. Again my low immune system had not coped. I changed dentist!
In 2006 I had a funny turn at work, primary school teaching assistant, when I felt a numbing sensation on the left side of my scalp and a bit dizzy. Felt fine and carried on and only went to the doctors a week later because I couldn't feel the temperature of the water on my head, in the shower! He sent me straight to A and E at North Staffs, 20 miles away because they had a neurology department. I left my handbag at work!
For 3 weeks tests were done but I can not have a MRI as I have metal in my skull from surgery as child so a CT scan showed some information. I was becoming increasingly agitated as communication between the hospitals was non-existant dispite my requests for information to be shared, something I am sure is common with some of you reading this. Also I was in the final term of my degree course (in Education) and had to finish and hand in my dissertation. A laptop was allowed in and despite blurred double vision and partial ptosis, I produced the best piece of work I had done in 3 years! They told me I had had a TIA (mini stroke) and had 2 orbital pseudo-tumours with calcification behind my eyes.
A consultant neurogist, Dr Sussman now sees me at Manchester and put me on asprin (small dose) and statins.
Next came more double vision issues and joint pain so time to change treatment. On to Mycophenolate which helped but in 2008 I was becoming increasingly fatigued and grumbling disease was present. So I was offered Rituximab. One infusion before Christmas, one 2 weeks later. My joint pains settled after the first dose but began to return as due to a flu outbreak in hospitals, my treatment was delayed to a 4 week gap. That said, I felt amazing and blood results were perfect. They said the effects might last 18 months. 5 years on and I am still fine. We know if I have a bad relapse Rituximab will help. A great reassurance to me.
In Jan 2010 my consultant at my local hospital who monitored my hearing (and aids) suggested he could do an operation on my ears and nose! My Manchester team said no way and referred me to Mr Rothera at Salford Royal, a specialist in WG and ENT. What an amazing man. First he asked why I wore hearing aids! Had anyone suggested grommets. No. He booked me in. I was very gratefully for the hearing aids but the grommets are brilliant. Replaced a couple of times but worth it.
March 2011 saw 'Slapped Cheek disease' in school (Parvovirus B19) which I caught and which left me with palpitatations, rapid heart beat and sometimes light headedness.
Felt really well until Sept 2012 when 999 was called and I was rushed into the local hospital this time with stomach pain, vomitting, diarthoea and rigors. Not pleasant! Local hospital suggest diveticulitis but I think it was just gastroenteritis made worse by my low immune system and past problems. Again the local hospital does not have access to my mountain of notes in Manchester..
Over the years other related problems have occured. I have had pleurisy in both lungs several times which has left me with lesions on the lungs. Scleritis is often a problem and osteoporosis is present, I have cracked cartilage and several ribs but Risedranate Sodium is helping. Twice I have had psuedo tumours removed from my right cheek. My face looks like the underground train map!
Two weeks ago Mr. Rothera performed surgery to reconstruct my nasal airways and the result is amazing. I had a removable stent which I inserted every other hour for a week to aid healing and now am sporting a lovely nasal splint to keep the nostrils open. For the first time in 40 years I can breath in and out through my nose. A very odd sensation.
My nose tilts to the right and over the last couple of years the younger children at school have made comments. Also my daughter got married in 2010 and I had asked if any surgery could be done to straighten my nose before the big day. Due to my complex (triple!) cleft palate issues and the grumbling WG nothing was done – until now! Mr. R now says he will perform another operation to build a support for the airways using and will straighten my nose at the same time. Fantastic news.
I have always kept a positive attitude, even when forced to slow down and rest. I count my blessings every day and have faith (found when desperate in hospital in 1995) and that helps but this year has been particularly hard for me as my partner died suddenly and unexpectedly, after we thought recovering from pneumonia, in February. He was a wonderful, active man. I only knew him for 4 years but in that time he has been so supportive and his love and care helped me through a bout of, ironically pneumonia with pleurisy and a bad case of shingles in 2010. I feel his loss greatly and at times like this, having surgery on my nose and feeling so low, he would have been by my side, making me laugh at myself. Very hard without him and I know having him around has helped keep my condition stable. Since his death, my ANCA B3 levels have been going up.
On the plus side I have a loving family nearby, my lovely daughter made me a grandma two years ago with another on the way. Something to look forward to in 2014. I am on the lowest dose of prednisolone for 28 years i.e. 6mg and my dress size and weight, which thanks to those little tablets, goes up and down, is the lowest for 30 years. That is all for now fols before I remember something I forgot.
Well you did ask!
All the best to you all and well done for getting to the end!
Angela from Nantwich, Cheshire
Hearing problems from Wegeners GPA
I have been taking antibiotics for a reaccuring tooth infection but have noticed that there has been an increase in pains in my joints.
WG remission experiences?
High blood pressure!
