Diagnosed with GPA over 2 yrs ago.

[Noza456]

Hi, I am 63 and have been on the usual cyclophosphamide and prednisolone to treat Wegners granulomatosis.

Changed to azathioprine after 8 months and am now medication free.

It's a struggle with the usual aches and pains, mainly in the knee joints but I still walk the dog daily for approx. 1 hr per day.

I manage to work every day on 30 hrs a week.

Very often I do have to go to bed early due to tiredness.

I try to keep active as much as possible but try not to stress the system.

I have generalized a lot of what I have been through, which has been tough, but if anyone wants to ask any specific questions please feel free.

Many thanks.

[Lauriescott1]

I like you have the same condition and of a similar age 65 having been diagnosed with Wegners since 2010.

I've been on the same medication and suffered the same symptoms wth acute joint pain, tiredness & pulparic rash, the later an indicator to a flare of the Vasculitis returning. I've recently had several multiple flares and am currently having a 4th Rituximab infusion allowing a reduction of the Prednisone & stopping of the Azathioprine although been informed that condition will never be cured only held in remission necessitating barrier maintenance drugs for the rest of time.

I have been fortunate enough to have had a very knowledgeable Consultant at Darent Valley in Dartford and can't fault the help and care I've experienced with the NHS having been hospitalised on many occasions with related immunosuppressant conditions, Sepsis, Pneumonia etc but also lucky enough to have retired early shortly after diagnosis and commend you on still working as at times, as you know, the condition has made me feel particularly unwell.

Wishing you well

[Noza456 in reply to Lauriescott1]

Hi, thanks for replying to my post.

I feel as though I have had it easy compared to what you have been through.

I originally had a chest x-ray when feeling unwell with an ongoing cough and continuous tiredness.

The result of that was being told that I had lung cancer with a 5cm tumour in my upper right lobe in my lung.

Long story short, I had the tumour removed and diagnosed showing wegners granulomatosis.

It also affected my throat, hearing, and the usual aches and pains in the joints.

I feel I have been lucky since I had been diagnosed and placed on medication pretty quickly.

My other organs do not seem to have been affected at present.

I am in remission and am being monitored at 4 monthly period.

I do hope you begin to get better very soon

Many thanks.

[nicholson27 in reply to Lauriescott1]

Hi,

I was interested to read that you gave a knowledgeable consultant at Darent Valley Hospital and was wondering if you can tell me who it was. I also gave GPA and live in Dartford but travel to Addenbrookes for all my treatments.

Thanks.

[Lauriescott1 in reply to nicholson27]

When first diagnosed I was with Kings/DVH under Paul Murray who was excellent however returned back to the West Country when his house relocation dragged on.

Sine then I'm under Jonathan Kwan & Andrew Coutinho as Renal Consultants & Dr Shafi from Haematology- I can't recommend them highly enough & my care over these last 6 years have been excellent.

Hope you're keeping well.

[Justjudes3824]

Hi Noza I was diagnosed with Wegeners in 1998 I had kidney failure and was really very poorly however after excellent treatment at Dorchester hospital and their care ever since I am still here 😀 I am 80 years old but like you exercise as much as possible going to the gym and trying to do my 10000 steps a day. Good luck and well done keeping going I know only too well it’s not easy. Cheers Jude’s

[Noza456 in reply to Justjudes3824]

Thanks for replying to my post.

I hope I do as well as you which is brilliant.

Have you had any relapses during your 20 yrs or so of remission ?

I am 3 months into mine and have good and bad days but I am in a position to accept this is normal so it's no problem.

Look after yourself and keep going.

Thanks.

[Justjudes3824 in reply to Noza456]

Yes I did have a couple of relapses and had to go back on high doses of the drugs but I didn’t have to go back in to hospital. So keep positive and I know you will do well. Good luck you have the right attitude and take care of yourself

[Noza456 in reply to Justjudes3824]

Thanks for the encouragement Jude.

I have always had a positive attitude even when I was originally diagnosed as having lung cancer (even though I had never smoked).

I had the tumor removed which was part of the vascular condition of wegners.

The biopsy of the tumour showed that I had GPA.

Then began the long road to recovery, which now seems a distant memory.

I wonder if anyone out there has fully recovered from this disease. I have been told that it is possible for auto immune conditions to burn out and reset the body's system back to normal.

Here's wishing that happens to loads of us sufferers.

Thanks

[Justjudes3824 in reply to Noza456]

The last time I saw my consultant she said I guess you are in remission so I’m sure you will get there. Take care x

[brown136]

just read your post i have just been diagnosed with same gpa mine was to do with sinuses the predolisne has kept me awake for week s with the hot flushes however i do not get headaches anymore and reading these posts i will have to go for more walks thanks for your advice

Ian Brown

[Noza456 in reply to brown136]

Hi Ian,

It's trying to show that you are not alone with this illness and it's bouncing practical and sensible suggestions to keep motivated and positive.

Sometimes I have not been able to get a walk in due to tiredness.

But it makes me more determined to walk further than normal the following day.

I am recovering from a sore throat and cough at the moment which makes you think that you're starting to suffer from a relapse.

I have just got back on the bike yesterday after 3 weeks off and started to feel much better.

Did a turbo session this morning due to the strength of the wind, since I didn't want to overload the progress of my recovery.

It's all about being sensible which I have to admit that I have not been in the past and have worn myself out to try and keep fit.

It has taken me over 2 years to get into this position whereby I only take vitamin supplements or ibuprofen if my knees ache too much to reduce inflammation, but this is not very often.

Wish you well on your recovery and if there are any issues which are concerned about don't hesitate to contact me (although I am not a doctor)it sometimes can be better to talk to someone who has experienced the illness.

All the best

Chris