My mum

[hgibbo]

Hi there. My mum has been recently diagnosed with Wegeners granulomatosis. She's in her 50's and I am beyond worried and upset about her prognosis. I'm not well educated in the facts and progress about her condition so any help or info would be so greatly appreciated. Thanks in advance.

[Musedave]

Hi hgibbo,

I am in my 50's and was diagnosed with WG in January. There's a wealth of information available on the internet and most of it very good. You're on the right pages to get started, but bear in mind that it is different for everybody, a significant factor in the prognosis appears to be how early it was detected, and the quality of care after diagnosis. In my case my GP practice have little or no experience of WG, they do their best but I don't expect them to be proactive in my care or monitoring, my Rheumatologist is busy, has a lot of patients to monitor and doesn't have a lot of time when I see her, so I would roundly endorse what John Mills (a Vasculitis hero with WG) and others have said elsewhere; use the resources on the internet, find out as much as possible about the disease, get your mum to be self aware of her condition and symptoms, stay fit, live life to the full, and we can't beat Vasculitis, but we don't have to let it define who we are. There's a Vasculitis Patient Symposium in London on 18th April. That might be a good starting point if you can make it.

I wish you and your mum good luck. Phil

[Lauriescott1]

Hi there - I'm slightly older than your Mum at 60 but contracted Wengers in 2013 at which time I was very ill & hospital for 5 weeks until it was eventually diagnosed at Kings - Since that time I have been fortunate to have been with a very knowledgable Consultant.

In the initial period your Mum will undergo a series of checks, bloods, urine & hospital visits until such time as they have stabilised the condition - As you probably know there is no cure but they can, like me now, get it into remission.

They will almost certainly start with cyclophosphamide & a high dose of steroids ( I started at 30mgs) along with other tablets to sustain calcium levels & a regular BP - Your Mum will graduately start feeling considerable better with these immuno suppressant drugs but it's essential that she stays as isolated as possible from people with colds & goes to her GP straight away if she contracts a cough or any flu symptoms, rise in temperature.

Things will get better for her with time & with a greater knowledge of the condition & help from your Consultant.

[Lamama]

Hi Hgibbo

The previous Replies are hold! I too was floored almost a year ago to the day when my prviously superfit, super healthy, clean living husband was hospitalised with near kidney failure "out of the blue". I was shocked at the severity of the treatment but by asking lots of questions, using this site to verify, and questioning professionals, good support and care can get you to near "normal" again.

All the best

[Nadine99]

Go to the Vasculitis UK website. Loads of information there for you. My husband was 54 when his symptoms started, diagnosis took a year and he's still being given different drugs to get him into 'remission' but this in no way deflects from the fact that he is still able to live a near normal lifestyle. He has chronic fatique which limits some things but at least he does the ironing now!! Your mum will begin to understand the illness, live with it and get the better of it. Good luck and happy reading.

[Jase222]

I have MPA very similar to wg and had it very severe in hd unit for a week, to be honest I found the drugs were a part but it's all the other problems that vasculitis causes that drag you down !I would do a lot of reading and write a lot of notes as many doctors don't understand !

[DevonLottie]

Hi, I'm in my 50s and have had wegeners for 14 years or so. Just to add a practical note to what everyone else has said, try to make sure someone goes in with your mum for every consultation. When it's all new it's quite confusing and really useful to have someone to check with on what the consultant said. It is also good to keep a diary of appts and medication changes as your mum may well see different consultants from different departments who may not have access to her notes. I do hope they get her disease under control quickly. Which hospital is she being treated at?

[hgibbo in reply to DevonLottie]

Thanks for your reply. She's being treated at the Western in Glasgow

[DevonLottie in reply to hgibbo]

Have you checked out the local support group section of vasculitis uk? If you go to their home page (vasculitis.org.uk) and click on support groups on the top right hand side you'll find there is a telephone number for a lady in Glasgow who may well be able to give you advice on the western and how to access the best care. Hope that helps x

[Hidden in reply to hgibbo]

Hi hgibbo,

I stay in Scotland as well and have possible Behcets.

There is a new Vasculitis Clinic based at Glasgow Royal Infirmary headed up by Dr McGeogh who is a Rheumatologist but they have links with other specialities as well. I have met her once at a support meeting. She is very personable and has had special training in Vasculitis.

As the others have said making sure your mum has access to the best treatment possible by Dr's experienced in managing vasculitis is key. I hope your Mum can access this clinic.

Best wishes

Keyes

[AndrewT]

Dear hgibbo,

Sorry to hear that your mum has become so ill. You don't mention where you/she lives or indeed which hospital, or consultant, she is under. Whilst on the subject, can you get her to Addenbrooke's Hospital Cambridge? Dr David Jane, the country's (worlds?) leading expert is based there-he also happens to be a consultant to our 'sister organisation' Vasculitis UK. I had a Kidney transplant there, in July 2013, and have opted to remain under their care for vasculitis. (My 'transplant' care is now under Ipswich Hospital-who looked after me originally.)

Please don't think that other hospitals don't have Vasculitis/auto-immune specialists, I know that they do-my own 'Transplant Doctor', Dr Andi, is in fact extremely knowledgeable. I'm sure that John, or Susan, at Vasculitis UK, our 'sister' organisation, can provide more details of what is available to you locally.

Please see if you can get to Addenbrooke's. In any event we all send you and your mum our love, and best wishes.

AndrewT

[luggsey]

Hi Higbbo, how is your mum doing? My mum has had vasculitus in a real acute way and for the last couple of years we as a family have been through hell. On the plus side my mum pulled through and although now disabled by the vasculitus she is generally very well. Along the way you learn so much that can be passed on to others so do come back with some more questions if you need to about anything at all. I am 100% sure all of us here will try to help you with our knowledge and experience if you want us to. Best wishes.

[lfu2]

Hi hgibbo,

Just a bit of usable advice.... when she goes for a consultation, tell her to put her phone on voice record.... record the whole consultation because if you rely on memory alone you will forget things said. She can play it back time and time again at her leisure. It is also useful to make a list of points/symptoms that she wishes to bring up with the consultant and refer to it. Best of luck.

lfu2

[hgibbo in reply to lfu2]

Thank you very much

[hgibbo]

Thank you everyone for your replies, they're so helpful and comforting. It's early days so just taking each day as it comes.

[Suzym2u Moderator Vasculitis UK]

hgibbo if your mum is experiencing any problems at all please feel free to contact John, [e-mail] he will be able to give you the names of people to contact in Glasgow and doctors too...

meanwhile you could check the website vasculitis.org.uk/

best wishes to your mum, my John was 57 when he was diagnosed 14 years ago.

Susan

[hgibbo in reply to Suzym2u]

Thank you very much Susan