Vasculitis UK

Just diagnosed with GPA and trying to keep positive

Hi all, just wanted to post about my recent illness and final diagnosis and to say hi really.

I’ve been suffering with sinus issues since Early last year, face pain, nose bleeds and discharge, hearing loss, headaches... the usual! Finally after what seems like forever I’ve been diagnosed with GPA and have started my steroid treatment today and am waiting for my ongoing treatment plan which will be confirmed on Friday. I’m feeling up and down about it all. Happy and positive one minute then upset and worried the next. Just wandering if anyone has any advice for me going forward really. What have people done about work and daily life? I have three young kids and I’m exhausted but I have to keep going for them. I have a stressful job and feel I have to keep going with that too. I don’t know where I need to be or what I’m supposed to do.

I’m a keen cyclist so am trying to keep riding, partly to keep fit and partly to have some me time in the quiet of the woods.

I guess I just want to speak with people the same as me instead of the usual ‘I know how you feel, I get bad sinus problems’ just want to tell people to p**s off! (Sorry for that!) but it’s quite annoying!

Anyway, any thoughts or advice would be welcome and appreciated..

thanks

John

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Hi John and welcome to the group.

I am sure there will be people along shortly to share their personal experiences. I don’t have GPA myself but in general patients do best when treated by a Consultant with good experience in diagnosing and treating Vasculitis as it’s a rare, complex disease.

Out of interest have they mentioned what the treatment options might be and do you have any other organs apart from ENT affected?

Lynn

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I can't help Wengle82 but maybe you could help me, I keep getting sinusitis and tested positive for ANCA, however my GPs are reluctant to send me to ENT specialist how did you get help. How many times do you have to suffer before they will do anything. I am currently off work and in a lot of pain, I am self employed so its really affecting my income, and ability to do everyday activities.

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You need to insist on referal if you are ANCA positive. Maybe ENT or even immunologist. Get checked out by somebo.dy who knows what they are doing

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Hi both, and thanks for the messages.

I have been advised it’ll either be treated with Rituximab or cyclophosphamide. Not sure which is going to be best for me but I guess they will tell me on Friday as I’ve had loads of bloods today to see which will work for me.

I am being treated at QMC Nottingham so from what I understand am in good hands.

Lc24, I’d really push hard to be referred if I was you. This isn’t something they should be ignoring. My doctor said it was nothing when I went in and it took three attempts to get anywhere. I went to a different doctor in the end and was referred straight away. What other symptoms do you have if you don’t mind me asking?

John

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Hi John,

Are you under Dr Peter Lanyon’s team in Nottingham? If so you are in excellent hands!

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My husband has MGN . Took 3 months to diagnose due to they thought he had Wegeners. He is on Prenisone 50mg daily and Cytoxin 150 mg . The Cytoxin is every other month. They said he would be on it for ? 18 months. Hard to sleep with prednisone. He went through sinus surgery-for biopsy. We pray for remission. He is older 66.

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Hi Lynn,

Yes thanksfully! Sounds like I’ve got the right team behind me. I’ve been seen more since being referred there than I was previously at Kings Mill in months. Plus they have done everything so quickly. They don’t seem to be messing about

John

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Dr Lanyon is always so very helpful to VUK so I am not surprised to hear your treatment has been excellent and timely!

As I said I don’t have GPA but a positive attitude and regular exercise helps me cope. I am sure there is a VUK local group in your area if you feel it would help to meet people face to face for a chat.

Unfortunately people don’t get it till they get it if you see what I mean. 😔

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The team there have been great and he is very good. Straight down the line but caring. Can’t really ask for much more.

My recent feel has been that cycling is the one thing that keeps me sane. Like meditation almost. Must keep on it.

I would be interested to meet up with likeminded people. You come across plenty who have ‘sinus issues’ or ‘know how you feel’ but like you say. They don’t get it because they haven’t got it. It’s amazes me really how it has affected me. And how quickly it has changed. Hopefully now I’m on the right track with the right team I can keep on top of it.

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Don’t underestimate the psychological effects of being diagnosed with a chronic, remitting, releasing disease.

Much of the focus is on the physical effects and treatment but it can be a real shock especially if you have never been unwell before.

I coped by learning everything I could and becoming an expert partner in my care, that was the way I took some of the control back of my life.

It does get easier, be kind to yourself and hopefully your expert treatment will bring about a quick remission.

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The link to the VUK local groups

vasculitis.org.uk/about/fin...

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Hi John,

I was diagnosed with GPA in 2015, with the most apparent symptoms affecting sinus etc, so sounds similar to yours. I think you've already had lots of good advice but here's a couple of things I have learnt of the last 3 years.

1. Don't ignore variations in your symptoms, and listen carefully to what your body is telling you. Stress, tiredness, unhealthy eating and drinking (I'm talking more than 1 glass of wine here!) have all exacerbated my symptoms, despite being on medication (methotrexate). We need to be careful to avoid a relapse.

2. Keep up the exercise and stay healthy.

3. When you get tired, one of the symptoms, take time out, sleep, relax; don't try to push through it to achieve what you feel needs to be done. Staying healthy and staying alive is much more important.

Good luck. Despite the shock of acquiring GPA I think most of us are lucky enough to continue to have happy fulfilling lives, albeit with a few changes of lifestyle.

Phil

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Thanks Phil

Nice to know someone knows exactly how I feel. People just don’t understand what we are dealing with.

Good advice, I think knowing how to be and feel is hard for me right now and I feel guilty at work or at home stopping and resting. Especially leaving my wife with 3kids! But she’d rather I had time to relax than not be there at all! Just need to get used to it all.

My aim to to definitely keep fit and eat well, although we had a lazy chippy tea tonight! But generally it is driving me to get fitter.

Good to hear you are doing well with it and hopefully I’ll be the same long term

John

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I second Phil's advice -- it's spot-on.

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I love what you say here to tell us newbies to not rush and to take care. And that you are ok after adjusting to what became your new normal.

This is why a site like this is so important..to help us see how people really LIVE ( not die) with such serious diseases.

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Hi John

After 11 years of attending doctors witch increasing symptoms of allergies, rhinitis, sinusitis, asthma, loss of smell,taste and hearing I was in so much pain in my arms and legs that I presented myself at QEUH A&E dept. After several days I was diagnosed with EGPA at the age of 55. Many of my organs had been damaged including liver, spleen, left eye, nerves and muscles in my legs and right arm and hand. Above all, my heart was damaged and I had to have a defibrillator fitted to my heart. The day after it was fitted I was allowed out of hospital - 5 weeks after going in. I have been a very fit man all of my life and played tennis 3-4 times and golf1-2 times per week as well as going to gym. I found that I was very tired but,like you, keen to regain my fitness. I was off work for 6 months recuperating but this allowed me to walk and go to the gym regularly and rest appropriately. I had an 8 week phased return to work and have just started working full time. I can play tennis and golf but still can’t hold the racquet or clubs properly with my right hand. I get tired more than I used to and don’t push myself to do as much cardio exercise as as I did previously. Only now do I feel that I will get back to somewhere near my previous fitness levels despite being very positive throughout. Other people have given you good advice and I would urge you not to get down about your illness. Like me you now know why you gave not been feeling well for a long time. I am sure that the medication will work for you as it worked for me. Good luck and good health for the future.

Harry

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Thanks for the message Harry,

I’m sorry to hear you have had such a tough time but it’s sounds like you have managed to come out of it positively and you are now getting back to some sort of ‘normality’ with work and doing the activities you enjoyed before.

It’s sounds like that positivity has got you through it and I need to remember that. I am very up and down at the moment but it’s early days and I need to remember I am being looked after and I will do everything I can to get through it.

I just need to remember the positive people like yourself and it’ll help me through!

John

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Hi Wengle82, I understand how you feel. I was diagnosed in November last year and began treatment immediately. It's a lot to wrap your head around and I can imagine it's especially difficult as you have little ones to take care of. I'm in my early twenties and when I was diagnosed I was convinced my life was over. Stay strong and I hope you're able to continue with your cycling. Its normal for your mood to fluctuate, especially on high doses of Pred. Don't be afraid to speak with your GP if you require additional psychological help :)

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Hi John

My husband was diagnosed with MPA in July 2016. His has affected only (touch wood) his kidneys and he's on dialysis awaiting transplant. He was previously v fit and active too. My tip would be to bear in mind that at the moment while you're on high doses of steroids you may get a false "high" and feeling of energy. But once the steroid dose is lowered as the cyclophosphomide or rituximab kick in you may well feel worse. But don't lose heart ; once they're doing their job you can start to assess and judge your "new normal" and take it from there. Hubby used to do lots of off road biking and walking 10-15 miles on the moors. Now he enjoys walks at a slightly slower pace and does 3-5 miles. So cycle, but plan cafe/birdwatching/photography breaks and enjoy the scenery. You say "the quiet of the woods" so you may be off road? Hubby bought a nice camera so he can enjoy his shorter walks and focus on admiring the scenery

I totally echo Phil's advice to rest when you need it. In time you'll learn how best to ration your energy to make sure there's the best chance of having it when you need it e.g. children's holidays.

Best wishes, if you and your wife work together as a team you'll get through this 👍

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Hi John. I think a site like this really helps fill in the gap for us between a bad test result or diagnisis and when (10 days later maybe) we FINALLY see and speak with THE DOCTOR. The real people on the forum help us in the moment.

Once my heart was ok and pneumonia gone my doc said ok to be active. If your cycling is emotionally restful and not taxing it is very important to you.

Change how you do things at home...ease up on having things just so. Use a clean plastic lawn rake indoors only to rake up the toys. Eat on paper plates picnic style sometimes to cut down on dishes. Get household help sometimes. Employ the kids in chores.

I didn't push anything until I got a doctor's green light. People who have this and are kind of adjusted, in. remission and managed well are the ones we look to, but they too had to first get the disease under control. Remission can come in 3 to 6 months if the medications are right, so I have read. But until then most of us have the life saving yet evil effects if Prednisone. High doses literally eat your muscle. You cannot expect the same strength. The book Coping With Prednisone was very informative. Then I knew why I felt shaky after walking a little while or emotional or impulsive with my words. I warned people around me...but I shudder at some things I said til I kept a bit more quiet.

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