Wegener's Granulomatosis

[Dougiearchieizzy]

Hi, I am a single woman of 47 living with a 2017 diagnosis of GPA. I would love to hear from anyone who is suffering from the same condition.

[Canygirl61]

If you are on Facebook, you may find support here m.facebook.com/groups/22546...

m.facebook.com/groups/16632...

[ZiggyDiego]

I'm in the same situation: was diagnosed with Wegener's/GPA in January 2017. It's been a rollercoaster ride with emergency infusions and scary symptoms. I'm looking forward to my first planned Rituximab infusion in December, holding off people with infections so I'm ready for it. Living alone brings more challenges. What is your situation at the moment?

[zoe69 Moderator Volunteer Vasculitis UK]

Hi,

I have been diagnosed with GPA almost 4 years ago. It affected skin, joints, abdomen and lungs. Had 6 cyclophosphamide infusion and started with 60mg of prednisolone. Then I was put on azathioprine while reducing my preds. I am prednisolone free 9 months now.

A rollercoaster of a life, but I managed to start working full time a year ago.

I live in Devon, UK.

[nicholson27]

Hi, I was also 47 when diagnosed with GPA. That was now 3 years ago and I have just gone into remission in the last couple of months. Mine was a very refractory case which resisted the normal 6 cyclophosphamide infusions and eventually took 16 plus all the steroids and about 10 rituximab infusions. It has left all kinds of damage to eyesight, hearing, joints, lungs, no sense of smell or taste plus other symptoms. Most people’s cases respond to the treatments sooner than I did and don’t result in all of this and I hope that is the case for you. It is a complicated scary disease with so many variables that a good consultant is essential. I started at my local hospital who were unable to diagnose and sent me to Guys and St Thomas in London who treated me for a while and got the disease stable but did not really get on top of it so I transferred to Addenbrookes vasculitis clinic who have been excellent. Don’t give up hope is the main thing. Life will never be the same as it was before but that doesn’t mean that you can’t still enjoy it despite this awful disease. Good luck to you.

[Alanball]

Hi there.

I was diagnosed with GPA (WG) in December 2015. After spending 22 days in hospital with blood tests every day and ct scans and 2 kidney biopsy. I have lung and kidney involvement. I had to pack up work and may still not working,

There has been so ups and downs and quite a few emotional times due to being on pred, they are being reduced and am gradually feeling better.

Best of luck to you and hope all goes well

Regards

Alan

[sam05]

my mother also suffer from GPA but no worries she is alright now .

if you are gap positive consult good neurologist as early as possible to aviod numbness of body part.

[DevonLottie]

Hi I was diagnosed with gpa 18 years ago - I'm now 59. Do you have any particular questions/concerns? As others have said it's important to get yourself a consultant experienced in the disease - there are centres of excellency you can ask referral to. How are you now?

[Tbrz]

Hi, I was diagnosed with GPA in 2016 aged 47. I had been suffering with sinus problems for 2 years, seeing doctors repeatedly, with no response to antibiotics. It has been a long road, I’m nearly at a clinical remission but I have been left with dreadful neuropathy in my feet and left leg and of course the horrible side affects from steroids. I have had to go back up to 10/15mg on alternate days as I have been really suffering trying to taper with sickness, joint pain. Unfortunately my work got rid of me and I have not been able to work since, if I will ever be able to return, although I live in hope. My life has been tipped complete upside down, everything I took for granted I am now not able to do, I had a lovely job was about to get a promotion, was doing a masters with the intention to carry on and do a PhD, as well as juggling a family and household. Now, I am very house bound as not able to drive or walk very far, due to the neuropathy. Anything outside my daily routine, takes it out of me and need days to recover. I struggle going out for meals as it is so painful for me to sit. I used to love reading, but struggle with this now as I am sure damage was done from the sinus involvement, as my head was full with blood, it was literally coming out of my nose and ears. So yes life has been a real adjustment and definitely not easy. I do struggle not to feel like a complete waste of space, people do not really understand what a long term illness does, yes the emergency clinical part of the disease has gotten under control, but it is the lasting damage and the silent side effects which cause the most daily problems. The insomnia, the fatigue which means every step has to be thought about and even lifting your arms in the shower feels exhausting, I’ve never felt anything g like it. But, each day I strive to do something, however little, little wins, whatever they may be. Yes it’s hard and I admit I’m struggling at the moment, but I continue to fighting, looking forward and hoping that I can be useful. So I wish you good luck, it’s a difficult ride!

[CL10 in reply to Tbrz]

Hello, I have just read your post and it is the first one I have read that I can relate to. I have polyarteritis nodosa, I haven't had a flare for about 2 years but like you I have bad peripheral neuropathy in my legs and arms. I don't have a day without pain, I take a lot of different tablets of high strength but still cannot get through the day without taking frequent rests. I have chairs that recline so I can get my feet off the floor, my heels, ankles and feet are constantly throbbing, burning but are so cold. I wear thermal soft top socks but they are still ice cold 90% of the time. I find it very difficult to stay on my feet for any length of time, I walk with a limp because of the pain in my limbs. Like you I had a very good job but lost it because of the way I have been left. I, like you, struggle with simple everyday tasks due to muscle cramps in my arms and tiredness. I spend most of my time in the house I have started to learn a new language to keep me from thinking of my pain. I was told to exercise but I found that made me a lot worse. I wasn't told about how the damage from this disease would leave me and that's another thing i struggle with mentally, I would like someone (doctor) to tell me this is normal for this disease and I am not going mad.I know vasculitis affects others a lot worse than me and I am thankful that It didn't do more damage than it has. I know what you mean when you say you just keep going because there is no other way to deal with it, I don't want sympathy just understanding. Everyone tells me how well I look but they don't know how much pain and discomfort I am in and I don't want to tell them as I will put them on a downer.

[Keithtim10]

Hi Dougiearchiezzy i can totally understand your situation i was diagnosed with same in Dec 2015 and it also damaged my kidneys to the point i have stage 3 CKD.It is a long road with ups and downs i have had Chemotherapy,steroids by the dozen,Rituximab Infusions,Plasma Exchange and Azothioprine.I have had one relapse but most of the time and at the moment i am in remission.I have had and still have brilliant consultants who really look after me.I know it may sound a lot of different treatments and a bit daunting but in the end i feel not bad at all i get tired more quickly now but in general i can get on with life and go in my garden and i have confidence in the people looking after me and keep regular checks on me.It is hard and you do get depressed at times but the good times are a lot more so keep positive and talk to us on here as the help is tremendous.Hope this helps good luck.

[danerd1960]

Hi I also have GPA-diagnosed in January 2017. I’d like to keep in touch with you!

[russellk3]

Hi I was diagnosed with gpa in Dec 15 had the cyclo and pred treatment now on azathioprine only still suffer with aches and pains especially my lower back the only damage I have now is subglottic stenosis after two ops it seems to be lasting a bit longer than a year I have managed to return to full time work after a year off keep your chin up it will get better this is the best place to come for info as everyone says an understanding consultant is most important hope all goes well

[Dougiearchieizzy]

Hi Everyone,

Thank you so much for all of your replies. I'm so overwhelmed at the moment with everything I've read about you all (and scared too), I'd like a chance to take on board what you have all said. For now I would like to withdraw from any further communication until my mind set is a bit more settled. Thanks again.