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Vasculitis UK
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Has anyone got WG?

Anyone with WG?

I was diagnosed in 2016; 2 years into retirement. Previously I was fit and healthy with never a day off sick. I had pneumonia and was hospitalised for 1 month before they knew what the problem was. Now I have to wear hearing aides due to fluid in the ears, I have constantly blocked up nose, am breathless on the slightest exertion and am nothing like I used to be. I come under rhuematology, renal, respiratory, ENT and the appointment system is very stressful. I had a ‘flare up’ in Dec 2018, had treatment with rituximab in hospital. I’m interested in what treatments others have had and their effects. I get depressed and angry at having this incurable disease and although having to adjust myself to it have not accepted its presence. What are your experiences? I live in the southwest

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Hello Egre,like you I was perfectly fit and healthy before the onset od WG which took 5 mths to diagnose and 7 GP`s who failed to diagnose ,by this time (feb 2011)mylungs and kidnys were affected.I had a flare nearly 3 yrs ago I was down to 1 mg Pred but have been on 5 mg since then.....am resonably ok,but am on 1500mg Cellcept daily (mycophenelate mofeteil)I get days when I am SO lethargic that i just have to lie down....I hate this,also anything which involves bending,dont like that either,just feel I cant get my breath....my nose is very mucousy in the morning but this does subside during the day....what can we do about it,not a lot it seems we`ve just got to grin and bear it......I hate being in this position

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I have the bending problem as well. There are so many things too numerous to mention but life goes on......

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Come and join the FB page for Vasculitis UK and you will be able to read lots of info there

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I’m not on Facebook and don’t want to be but thanks for the info

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I was a member of the face book page (husband has GPA) but found it very depressing/distressing. I prefer this support tbh.

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I just thought that more people were responding on there but I do agree, it can be depressing although I also recognise how well off my husband is compared to some.

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Hi egrets

I have gpa I also took around 6 months for diagnosis It was in Dec 2015 was very fit before running 6 miles a day never had a day off work in 25 year then needed a whole year off I had lots of visits to gp in the six months to get to the bottom of sinus trouble,severe joint pain,rapid weight loss and being out off breath ended up in a&e due to coughing up blood and hardly able to breathe luckily the consultant has another patient with gpa and suspected I had the same I was treated with steroids and cyclophosphamide only trouble I have now is subglottic stenosis which I have had two ops for currently on no meds due to low white blood cells I currently work 50-60 hrs as a hgv driver feel good but suffer from back pain I just take each day as a blessing it could have been worse you will have good and bad days hopefully the good outweigh the bad keep your chin up it will get better

Regards Russell

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Hi Russell

How Does DVLA look upon WG ?

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The dvla at first said they weren't interested because it wasn't on there list of illnesses but the occ health at my work basically put pressure on them to look into it properly because they didn't want to take any chances I don't think it matters for cars but I drive hgv's it came back okay took 5 months I only have to inform them if my health changes the stenosis is not great had two ops the relief of being able to breathe normally is underrated had last op Nov 17 and it's still okay but my pulmonary consultant has referred me back to ent after a recent ct scan shows new soft tissue scarring in trachea I'm okay just now but when it gets bad I can only describe it as trying to breath through a straw and at 48 it's not great but I have a good ent consultants phone number so I can contact him directly cuts down on the waiting

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Sorry about the stenosis part that was meant for egre

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Thanks for your reply Russell.

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I think a lot around the diagnosis is down to ‘luck’ as the medics don’t see it very often. I saw various drs and because I became ill at the same time as having pneumonia and the fact that they were trying to get me discharged that I think more effort and tests were done. I saw a dr who followed up what she said she’d do and she kept trying while the others seemed to loose interest.

Sorry to hear about the stenosis. That’s one thing I dread getting.

The thing that stresses me is that health specialisms are so uncoordinated and it feels like I have to harass them to get seen. This has been especially true with respitory which is a main issue for me.

Nothing can ever be taken for granted again so you’ve got to keep the chin up..

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Your correct with the diagnoses part they thought I had lung cancer at first after being discharged the constant hospital appointments can be a bit too much but as you improve they space out mine are if every 3 months the med will make you feel better in time it sure gives you a different perspective on life the best thing I have done is adapt to it and not let it rule my life

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Hi there egre,

You’re not alone. My rheumatologist suspected I had Wegeners (GPA) early summer 2017, because I tested positive for c-anca. This was after years of telling every doctor that would listen, “something is wrong with me.” I’m depressed and in denial— worst is, I’m not as ill as many are. I present “atypically.” I was first diagnosed with migraine associated vertigo, because of my terrible daily headaches and chronic dizziness. I too feel l’m weaker now, plus tinnitus, ear and face pain, blocked up nose that comes and goes ......too much to list. You’re definitely not alone. I belong to this group too m.facebook.com/groups/22546...

All the best,

Claire

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Thanks for the info. The thing with this condition is it can change from day to day so I don’t think there is any ‘atypical’

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Hi there Egre, I have had WG for nearly 30yrs ( I was in hosp. 6wks then as no one new much about it) now and had a relapse 8yrs ago which caused lots of problems this time, it takes a long time to accept that you have this horrible disease for the rest of our lives but think POSITIVE I no its hard but you will get there. I have bad days but rest is the best thing on those days. I suffer with nasal problems too and ENT department gave me AVAMYS NASAL SPRAY and it is great don't suffer now, I am on 5mg prednisolone (among many other tabs) and follow up Retuximab. You will begin to feel better soon, try and keep as busy as you can, it is hard but trust me you will get there xx

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Thanks for the info and support. I think that’s a steroid spray. I will as Ent next time.

30 years is a long time. I know i’m ‘Lucky’ to get later in life. Must be a lot more unbearable to get while younger. Horrible at any age though

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yes it is a steroid spray and I find it a tremendous help xx

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Hi Egre

I feel your pain and frustration. Try to keep your chin up and not let this control the rest of your life.

I was diagnosed with GPA in April 2017. The main area of impact was my lungs which collapsed. I was in intensive care for many weeks.

I was given cyclophosphamide Initially as 6 X weekly infusions . Since July 2017 I have been on azathyoprine tablets 175 mg daily and prednisilone which has fluctuated between 5-30 mg depending on how I feel.

I relapsed in June 2018 with symptoms of pain and itchynes in my nose, bleeding from my nose,swollen joint in my knee,streaming eyes, loss of hearing in my ear and uncomfortable when I breath

Ct scan has shown lesions on my lung again and rheumatologist advised 4x weekly infusions of rutixumab in addition to my azathyoprine and increased steroids. I am still on a reducing plan of stereods and now at 15mg daily.

I am just managing to get back out on the golf course and have been able to play a full 18 holes for the first time in ages.

I refuse to let this control my life and although I have some limitations in what I used to do, I have resigned to the fact that I need to make some adjustments to my life.

It is a frustrating and difficult disease to live with and I know there is no cure so I make sure that I make the best of what I can.

You can control this. Go enjoy your life

Stuc

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Yes I know what you mean about ruling your life and getting control. I’ve found when a main issue is about breathing you have to teach yourself how not to panic and to try to keep calm. Easier said than done. I saw a respitory nurse for the 1st time in 3 years and was show about breathing techniques which I am putting into practice and for me are helping so I’ve got some positive out of the recent flare up.

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Hi egre,

I've had gpa for 18 years with a fair few flares on the way but since the introduction of rituximab have been much much better. It is hard to accept our limitations but I find it helpful to concentrate on what I can do compared to when I was at my worst. Where abouts are you in the south west? We have a couple of support groups down here, both run social gatherings and are very upbeat. If you'd like to know more we have a website: vasculitiswest.wordpress.com.

Charlotte x

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I am in Cornwall and don’t think there are any groups out this way. I’m not really a group person but would be interested to know.

I had Rituximab when first diagnosed as the cyclophosphamide failed to get it under control. I don’t know how often this can be given as it targets certain white cells the good as well as the bad.

I will look on the website you gave.

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The nearest to you is Plymouth who are meeting up for coffee on 17 February if you are interested. I've had rituximab every six months for 3 years.it has compromised my immune system and I have replacement igg infusions to protect me from infection. It is worth it though as I'm very well otherwise.

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Dear Egre

I fully understand how you feel i was diagnosed 2015 with the same and went through Plasma Exchange then Chemo.Then had Azothiprine until i had a flare up then this was stopped and went on Rituximab every 6 months which at this present time has kept me in remission.It has left me with Stage 3 CKD and of course this wont get any better but i do look after them with diet.I do get your depression it does get to you when you think it is incurable and like you i am retired and maybe more time to think about it.I have found that doing other things and going out with my wife who is a great support works for me.Going on here i also think helps even if its just for a moan because there are others in the same boat.Keep talking we are all here.Good luck.

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You are right about having more time to think. This is especially true lying awake for hours on end due to the prednisolone but thankfully this is reducing now.

Keeping busy in the day does help and having some kind of goal however small. I guess it’s all part of the adapting.

Best wishes

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I’ve found it difficult to accept my GPA (Wegeners) too: it’s two years since I was diagnosed and my life has changed completely. Because high dose prednisolone made me mentally unwell (suicidal) I’ve been on the waiting list with mental health services for counselling. I’ve just started and it’s helpful to be able to talk. The GPA & the treatment has affected my eyes, nose, lungs, stomach and joints. I’ve got nerve damage in my feet and around my eyes. I’m on regular rituximab which has given me my energy back most days, which makes life more bearable.

Prednisolone does have a big impact on emotions, people talk about (ste)roid rage, so be kind to yourself. I hope to keep adapting, but it’s too hard to accept what this disease has done to my life.

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I can relate to steroid rage and emotional intensity which is hard to control. The treatments seems worse than the disease at times. Words cannot convey how debilitating and life changing it all is. You can only keep going forward in hope. I wish you all the best.

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Hi i don't have wg but my husband did. Just after he died i was diagnosed with churg Straus very similar. All the above you are going through is the same kind of things i have been through. I was very fit and healthy walked miles on the beach with dogs. I am lucky if i can walk to the car some days. Had counselling re the loss of my health and independence. I too have retired. But it was my health that took away that decision. If you want any suggestions shout. I am under neuro Southampton.

Rheumatologist at Christchurch hospital

Bournemouth hospital. And Poole for brittle asthma which was the start of churg strauss..

All the best carol

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So sorry to hear what you are going through. Reading other people’s experiences is something else.

Thanks for the offer. Seems like Rheumatology take on the majority of vasculitis cases unless you come within a an area with a specialist like at a university hospital. I wonder if the specialists are any more effective at the treatments and outcomes?

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My husband was diagnosed with GPA 18 years ago ... John was very fit and healthy, was an NHS dentist, he skied, renovated our house himself. Then he started coughing up blood which set the alarm bells ringing with the doctors in A&E and lucky for John the doctor on duty that day in A&E had a hunch John had WG ( GPA ) he saved John’s life. The GPA damaged his lungs and they are still scarred to this day. It took John two years to come to terms with the GPA, believe it or not, he also suffered two relapses, a DVT due to the Vasculitis and bladder cancer due to the accumulative dose of cyclophosphamide. ( back in 2001 the options for maintenance drugs were pretty small ) Azathioprine did not control John’s GPA, he did not have Methotrexate because of the liver implications so he was bit stuffed until Mycophenolate came along in 2006. MMF worked very well for John for quite a few years. But life didn’t come to an end , it was different to the one we planned not worse just different. We travelled a bit , bought a house in France to renovate and we look after our grand children from time to time. We also work hard on the Charity. It is a big shock when he was first diagnosed and it was hard in the first two years but he is still here today to tell the tale.

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Thanks for sharing your husbands experience. Yes life is different and full of compromises and tuning into yourself..

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