Acute shortness of breath

[Llinos]

I have had WG for 15 yrs and am currently having my 2nd flare up. I was admitted to hospital in Leeds in January before this flare up was diagnosed with ? right lower lung pain/ Kidney pain. It was never treated or fully investigated as I was 300 miles from home and they wanted me seen locally. I have had 2 Rituximab infusions in Jan and Feb and am currently on 20mg of Prednisalone . For the last 2 weeks I have been suffering with acute shortness of breath. I was admitted for 3 days as they thought I had a clot in my lung. A CT shows ground glass lesions on my lungs.What is this? Now , my consultant, is not concerned about my CT and says I have a chest infection. I have no cough, pyrexia or sputum! I finished a 5 day coures of Co Amoxiclav last Tuesday I get extremely SOB just walking up the stairs. I am waiting to be referred to a Rheumatologist. Previous to this I was fit and well.

I am so scared at the moment, no one seems to be listening to me, as I have never had Rituximab before I dont know how long it is active in my body or even if it is working. What is happening to me? I'm terrified this is it for the rest of my life.

[Hidden]

Hi Llinos,

Ground glass lesions refers to the appearance in your lungs, slightly opaque and not solid. There can be a few causes ( haemorrhages, infection etc ) but some people get them who have no lung disease and are asymptomatic. I have certainly heard them mentioned in relation to Vasculitis before.

You are obviously worried and I guess that your Consultant hasn't managed to reassure you, hence you asking here. Where is your vasculitis treated, do you go to a specialist Vasculitis Multidisciplinary Clinic?

I would recommend that you give the VUK helpline a phone and speak to John Mills who will be able to give you information and hopefully reassurance. The no. Is 0300 365 0075.

[Suzym2u Moderator Vasculitis UK]

Please do get in touch with John. If you prefer to write an email his address is [e-mail] I agree with everything Keyes has said.

best wishes

Susan

[tintinrob]

Hi Llinos, I'm so sorry to hear you are struggling. Regarding the 'ground glass' opacities in your chest X-rays, these are common in inflammatory conditions and chest infections, and as far as I can read, seem to clear up without too much permanent loss of lung function as long as you can fix or at least quieten the underlying condition or trigger. So don't worry!

Re having no cough, I have had really plugged lungs at times and been unable to push enough air through and so I couldn't cough and had no wheeze. A high pulse of prednisolone (45 mg / day for 3 or 4 days) would usually reduce the inflammation enough so I could then be able to cough and clear my lungs. Paradoxically, in my case I know that coughing up gunk is a good sign - at least it is coming out of the lungs even if it sounds horrible to others around you.

The best thing i have done for my lungs is to start taking high dose vitamin D3, 4,000 to 5,000 i.u. a day. I can now breathe enough to walk more and I get far fewer exacerbations of my breathing problems.

I keep a 'rescue kit' of antibiotics and prednisolone and I am careful to take 1/2 mg per kilogram of body weight of the preds at the first sign of lung trouble. 9e.g. 90 kg body weight = 45mg per day of prednisolone tabs) But the vitamin D, which I get from a health food shop in Plymouth, means I rarely need to use it now and my oxygen sats have improved from below 90% to about 97 or 98% when I'm at rest :-] Ijust had them lungs tested at Derriford hospital and the decline has been reversed!!! Not planning to die any more now...

Rob