I have been asked to share my story. Make yo... - Vasculitis UK

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I have been asked to share my story. Make yourself comfy and I will begin .......

Moley1 profile image
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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

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Moley1
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24 Replies
HiveMind profile image
HiveMind

OMG Angela! You've been through so much. What an amazing woman you are to keep going through all of that. You're an example of true courage and strength. You've blown me away with your story. I'm astounded at your spirit and I truly am in awe of you. I wish you nothing but happiness and health from now on. You surely deserve it. X

johnyenglish profile image
johnyenglish

RESPECT! Hope you have a healthy and happy Christmas.

After waiting 14 years for it to happen again, my partner and I had my 2nd child in February. After a very difficult pregnancy and lots of nose related and joint problems which continued post the planned c-section birth (initially all blamed on pregnancy hormones) I was finally diagnosed with WG on 6th November this year...an early Christmas present! I am having weekly cyclo and I'm on 60mg preds daily. I know you have struggled but I'm so happy to hear you are alive and you're going to be a grandma again! You have confirmed my hope that despite these bad bits and the challenges I can still enjoy seeing my son and daughter grow and have some life. I think you need the positivity you have shown, you are a worthy role model. Thank you!

Moley1 profile image
Moley1 in reply to

Not sure if you will read my general reply so

One of the proudest moments of my life was the honour of giving my daughter away. Sounds so odd. I was able to make a speech, a quote follows -

'Thoughout Judith's life I have suffered bouts of ill health. I remember thinking I hope I see her start junior school then I hope I see her start high school. Then through GCSE's, A levels etc. Well I made it through to see her graduate from University with a first class, joint Honours degree in Speech Therapy and Psychology. A very proud moment for me, as this day is.'

Knowing I had to be strong for Judith helped and now my hope is to see the birth of my second grandchild and see little Meghan start her school life. vjt1300 - when bad days come, take a tiny step forward and note it. Over the days you see how far you have come. When the good days arrive, rejoice and enjoy your family and the world.

in reply to Moley1

Thank you for taking the time to reply to me.

You have strengthened my courage in (what feels like) the battle to fitness. You have summed up all my hopes too with your speech that must have been amazing to deliver at Judith' s wedding. She is a credit to you, you must be proud of all her achievements.

My whole view of life has been shattered and my perspectives have changed...one thing I have found is that if the there are lots of kind wonderful people, like you.

I have the love of my children which is the strongest medicine I can get and they have a wonderful father and me, a loving partner.

I hope you can continue to be strong without your partner and that you have happier times again.

Kindest regards Vicky

rrahman profile image
rrahman

Well done u!! And thank you for sharing.

It's very reassuring to hear battles of courage and perseverance.

And am sorry for your loss. I hope your faith allows you that ease of comfort from the pain.

A verse from the Quran

"Verily in the remeberance of Allah, hearts are reassured" 13; 28.

I always say.....what doesn't kill you, only makes you stronger.

everything happens for a reason, there's good in every bad. And it's nice you saw that about your early diagnosis despite losing your unborn child. Drs probably wouldn't have taken it that seriously had u not been pregnant-sad but true.

I wish you well and congratulations, may you live a long healthy life and see your great grandchildren too!

X

Moley1 profile image
Moley1 in reply to rrahman

Not sure if you will see my general reply so

I say ' If you are going to have something wrong with you, make sure it is an interesting illness!' I have grown so much through battling this illness and the different treatments. But it has given me confidence to tackle anything and now I have a job that I love and couldn't have dreamed of in my youth.

My faith is helping in many ways but it is still hard. I love your optimistic hope about my great grandchildren. Wow. I have a smile on my face. Thank you

suffolkgirl profile image
suffolkgirl

Thank you for sharing your story. You've certainly been through a lot, but still seem to come out smiling! You are an inspiration to us all.

DevonLottie profile image
DevonLottie

As Craig Revel Horwood would say: a-maz-ing! Thank you for sharing your brave story, as others have said you are a real inspiration to us all and I wish you better health and every happiness for 2014. x

Moley1 profile image
Moley1

Thank you for you kind responses, you seem a lovely caring group of people.

To reply to vjt1300, one of the proudest moments of my life was the honour of giving my daughter away. Sounds so odd. I was able to make a speech, a quote follows -

'Thoughout Judith's life I have suffered bouts of ill health. I remember thinking I hope I see her start junior school then I hope I see her start high school. Then through GCSE's, A levels etc. Well I made it through to see her graduate from University with a first class, joint Honours degree in Speech Therapy and Psychology. A very proud moment for me, as this day is.'

Knowing I had to be strong for Judith helped and now my hope is to see the birth of my second grandchild and see little Meghan start her school life. vjt1300 - when bad days come, take a tiny step forward and note it. Over the days you see how far you have come. When the good days arrive, rejoice and enjoy your family and the world.

To rrahman I say ' If you are going to have something wrong with you, make sure it is an interesting illness!' I have grown so much through battling this illness and the different treatments. But it has given me confidence to tackle anything and now I have a job that I love and couldn't have dreamed of in my youth.

Good wishes to you all

Hi Angela,

Thank you for sharing your wonderful story which I will remember to help me get through the dark days.

Hope you have a wonderful festive season.

Regards

Keyes

Angela your story was so impressive and humbling that I have decided from henceforth not to worry about my own health stuff - which is relatively minuscule. You're amazing!

I hope you and your family have a great Christmas.

RArebird x

Katie18 profile image
Katie18

thank you for sharing your story. You are amazingly brave and an inspiration - i must stop moaning! have a happy and healthy new year

John_Mills profile image
John_MillsVolunteer

Wow, what a story!! I think we should all feel humbled by it.

John

Moley1 profile image
Moley1 in reply to John_Mills

John, I have just read your profile. It is I who should be humble. You do so much for us all.

I see you are an ex-dentist which reminds me I forgot to mention I had 3 teeth out, one being a wisdom tooth and one the aforementioned root filling, in October after months of discussion. My dentist wouldn't do it so referred me to the local hospital. I healed well but now have a very uncomfortable full plate which I am finding very hard to get used and has affected my speech. Odd as I have had plates since I was a teenager.

Anyway I ramble on again, so just to say thank you for all you do.

All the best

John_Mills profile image
John_MillsVolunteer in reply to Moley1

Hi Moley, sad that you have lost several of your dental "friends". If you've only lost 3 teeth (inc one wisdom, which doesn't count), I guess one must be a front tooth, so you needed a partial denture, which you've had for years. But you can easily manage without a molar or a premolar, so if the new plate is much larger than the old one, ask your dentist to cut it down in size.

I reckon you've had enough else to cope with.

BW - John

Moley1 profile image
Moley1 in reply to John_Mills

Hi John, Thank you for your reply.

The problem is added to by my cleft. I now have only one tooth top left (right fine) and that is not where it should be! Two back ones have caused me great pain with abcesses for a year and yes, very front tooth which kept falling out in class! The dentist has made the plate go right over the wound site at the back, to 'help healing' but my tongue has no where to go! I went back and he filed a bit away but then over did the adjustment (his words) on the side metal clip and now the plate rocks as well. Am having to use polygrip to keep them in. All very disheartening. So I will ring up and ask him to look at it again.

Kind regards

Angela

John_Mills profile image
John_MillsVolunteer in reply to Moley1

I guess from this that due to the cleft you have a narrow, high palate so the extra thickness of acrylic leaves little room for your tongue. It sounds like a difficult job that needs careful thought. Not easy to make suggestions without being able to have even a look. Best of luck with your dentist! John

Silentcorner profile image
Silentcorner

Hi,

Thanks for sharing your story with us.

Can I ask you a question please about your hearing please. You said that you suffered from hearing loss and were given hearing aids. Did they say what caused it? I have got Anca negative limited wegeners with sub glottis tracheal stenosis. I can't tolerate methotrexate or azathiaprine so I was taking mycophenolate but this also gives me side effects although it has put me into remission. I have now had an external ear infection for 8 months + so I can't take the medication. The right hand side of my face has also been swollen up. I personally feel it is a reoccurrence of the wegeners but my doctors in London and locally. They have offered me a hearing aid also but I don't think it is the answer. They are reluctant to give me a trial of rituximab even though they keep mentioning it. I am very frustrated to say the least as my symtoms are coming back!!

kind regards

Jenny

Moley1 profile image
Moley1 in reply to Silentcorner

Hi Jenny

I am sorry to hear of your medical problems and the resulting issues with treatments. It is so hard to keep a focus when constantly wondering what will happen next. But we do know our own bodies and symptoms and we do need to keep asking questions and this is why this group, sharing knowledge, is so valuable to us all.

Being a patient, but pro-active, patient is a vital requisite of having our disease!

I have bilateral posterior-superior retraction pockets with middle ear effusions. Also some erosion of the long process of the incus bilaterally. This means I have bilateral conductive loss but surprisingly good underlying cochiear function. My Eustachian tube function is also compromised, possibly due to cleft palate but mainly to the Wegeners.

As I mentioned I was given air conduction hearing aids 13 years ago (Withington, Manchester) for which I was very grateful. I hadn't realised how bad my hearing was until I switched on!

3 years ago my local hospital (Leighton, Crewe) said I had perforated ear drums and offered an operation, which is when my WG team based in Manchester, involved the Salford Royal ENT team under Mr Rothera, a Wegener's specialist in ENT with immense experience in this field. He suggested tiny titanium grommets! He also recently performed my nasal stenosis operation with great success. Back tomorrow for check up.

Of course having grommets is better but they do get blocked (v thick glue ear behind the eardrum). I go every 6 months and have the canal cleared with great results. However it might be that we need to alter the situation and put in a more permanent solution (under a general) but we are to discuss that in the near future. Always something to look forward too!

Can I ask what side effects Mycophenolate is giving you? Also is the ear infection on the right side? Is it the whole of the side of your face that swells? Over the years I have had 2 psuedo tumours in my right cheek which have been successfully removed, could it be similar? What sort of hearing loss do you have?

Sorry lots of questions. Look forward to your reply.

Take care. Angela

Silentcorner profile image
Silentcorner in reply to Moley1

Hi Angela,

Thanks for your reply, it is very detailed and interesting to read.

I am being treated by Mr Sandhu in London for my tracheal stenosis and his colleague Prof Pusey. I am also seeing Prof Emery at Leeds when I am stable and at York.

The mycophenolate initially gave me terrible insomnia but that improved when they reduced the dose from 2 gram to 1 gram daily. I had a relapse last summer and they increased it back up to 2 grams and unfortunately it gave my terrible diarrhoea and gastric symptoms. I was referred to gastroenterology at York who agreed with me that it was the drug. I have hardly taken the drug for the past eight months and the symptoms have now gone but they are keen to put me back on it when the infection has gone.

I have had chronic otitis externa since may 2013 (I had a couple of bouts in 2012 as well but only for 6 weeks). I have had many antibiotics and steroids but nothing seems to be working to clear the pseudomonas infection in the right ear. I have had both ears microsuctioned twice in the past two months. It was the right side of my face that was been swollen, it has subsided but I do seem to be left with a swelling on my cheek and also under my right eye. I had a CT scan in August which showed a thickened ear drum in London. I then had an MRI in York because of the swelling and that also revealed nothing other than the thickened ear drum. The registrar at York told me the only way to decide if its chronic infection or Wegeners is to do a biopsy.

I am concerned because every time they microsuction my ears or even examine them it sets off the infection again. I think it has now spread to my left ear as the pain is now the same in both, radiating into my jaw and neck. I have conductive hearing loss in the right ear.

Do pseudo tumours show up on scans? It is visible to see the swelling, the physician I saw in December noticed it straight away when she looked at me.

I don't understand why they can't give me a trial of rituximab. I do obviously understand it is expensive but I think they need to look for an alternative treatment otherwise I think I will end up deaf in both ears!

Its nice to be in touch with similar problems thank you,

Best Wishes,

Jenny

Moley1 profile image
Moley1 in reply to Silentcorner

Hi Jenny,

Just posted a reply on HealthUnlocked

I wrote “I am feeling sorry for myself, still battling a long chest infection but getting to work this week with slightly raised energy levels and enthusiasm only to fall yesterday (slip on wet floor) at work resulting in A and E visit. damaged cartilage in my right knee (did same 5 years ago) and possible wrist fracture!!  Back to fracture clinic this afternoon.  What fun.”

So thought I would catch up with you message. I am on 1500g of mycophenolate and it is interesting reading of your side effects. I have bouts of insomnia but had put that down to my recent bereavement, general emotional state etc. I also ended up in hosipital (via ambulance) last year for gastric problems – still not resolved. Maybe I need to question my docs.

I have had ear infections since the grommets but not painful ones due I was told, to swimming twice a week (with ear moulds) and so for the last 2 years I have not swum. Microsuction always helps hearing albeit short term.

My pseudo-tumours behind my eyes were spotted after a CAT scan. A shock as I had no idea but explains slight double vision. The pseudo-tumours on my cheek were visible and you could feel the lump. They did get larger but as I have a very odd looking face anyway, I thought it was part of my birth issues as my right cheek has always been different. My last op was so long ago I can't remember when it was!

Have you seen John Mills request about Rituximab. I think many of us have benefited so much and I know my docs are very supportive. What treatment are you getting for the face swelling?

All the best

Angela

Silentcorner profile image
Silentcorner in reply to Moley1

Hi Angela,

Sorry to hear your feeling low and incapacitated. What bad luck slipping over, hope it's good news at the fracture clinic.

Insomnia is a definite side effect of mycophenolate. I couldn't function that's why they reduced my dosage. The gastric and bowel symptoms were also impossible to live with. I was put on ranitidine as well as omeprazole and loperamide to bung me up as they didn't want to stop mycophenolate!

I am going back down to London in two weeks so I hope to get some helpful news. They haven't really told me why they think my face was swollen and still looks asymetric.

Take care,

Keep smiling,

Jenny

Leeboyp profile image
Leeboyp

Hi Angela,

Wow what an amazingly strong woman. My husband has been through very similar circumstances & would really appreciate talking to you via e-mail. Would this be possible. I think being in contact with you would keep him strong & focused. Regards Sara

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