I have recently been diagnosed with vasculitis in my lungs. I am being treated with Cyclophosphamide, steriods etc.

[dizzy49]

Having been really active I feel as though I have been slammed against a wall. I would just like to know anyones experience if I will get back to a good level of activity after I finish my treatment in the spring as I am told my lung xrays are looking good, or will I be limited by the damage done. Feeling pretty rotton at the moment, althought thankful that I was diagnosed quite quickly.

[LynneJ Vasculitis UK Volunteer]

HI there

I have fibrosis on my right lung due to the vasculitis.I am in remission with Azathioprine. It will always be damaged but the only way it hinders me now, is that I get breathless walking up big hills (stairs are OK) and I can easily get chest infections but my chest consultant says to get antibiotics sooner rather than later and so far after nearly 3 years I am back to relative normality.

I hope you go the same way.

Lynne

[dizzy49 in reply to LynneJ]

That is good to hear Lynne

[lisa-ranyell Vasculitis UK Volunteer]

Hi Dizzy

It varies from person to person but I believe it is ppssible to get back to normal activity, although there may be times when you need to rest more. Just listen to your body and build up gently after your treatment.

Best wishes

Lisa

[Ayla Volunteer]

Hi Dizzy!

Can't add much to the good advice given above but just be aware the initial treatment with high dose steroids and cyclophosphamide makes most people feel really grim. Worse, in fact, than before treatment started. The specialists don't usually tell you this. Once your doses are reduced you will begin to feel more normal. Take things gently for the time being.

Good luck and I hope you soon feel better.

Ayla

[pwc51]

As noted above, everyone is different. However I can relate my experience. I was a moderately fit 57 year old when diagnosed with WG / GPA (hill walking, mountain biking etc). In a short time I found one flight of stairs left me breathless. Fortunately diagnosis was fairly rapid and after a short spell in hospital cyclophosphamide treatment was started. I immediately started walking again (every day), initially 10 minutes but over a couple of months was able to get this up to an hour up and around the Surrey Hills. I have maintained this over the past 3 years. I have not yet tackled the Lake District fells again and fatigue can be a real issue if I do too much. I have found biking more difficult since - lack of practise here certainly does not help!

[jacmac]

I can identify with pwc51 as I too was diagnosed with WG at 57 with a history of liking most sports including Marathon running, fell walking etc. Now at nearly 65 I have had to trim my sporting ambitions to suit my fitness levels. From the lowest level where my Wife had to dry me after the exertions of just taking a shower, and being breathless on the stairs, I found a gradual improvement through the years. I am grateful to Dr George and Dr Sandhu of London for the dilation procedures performed on my lungs. Last year I managed a 3000ft fell in the Lakes and am playing regular Golf, Short mat bowls and Table Tennis. Moderate your goals and slowly work towards them...good luck. Jack McMenamin

[dizzy49]

Thank you for taking time to reply to my question. I loved to aqua run three times a week, gardenening and walking, because I have it in both lungs, walking up the stairs, getting showered feels like I have scrubed the house from top to bottom. It gives me hope that once my treatment is fininished and with time I will at least get back in the pool.

Can I ask jacman, what is dilation procedure, that sound painful

[jacmac]

Dilation of narrowing airways is performed under full anaesthetic and may need to be done two or three times to gain the successful widening of the airways. It is a Bronchoscopy type procedure i.e. via the mouth and windpipe. Thin metal rods are expanded in the affected narrow areas and small slits are made to prevent tearing, these are then injected with steroid. I found that I was breathing better after this procedure so personally would have it done again if the occasion arose. Hope this helps. Jack

[dizzy49 in reply to jacmac]

Thank you for taking time out to explain, hoping that the treatment I am having at the moment will do the trick. Thanks again to all those who have responded to my question your repsonses have been really helpful

Jacqueline