Ongoing chest problems

[Essex-jill]

I was diagnosed 17 years ago with WG. I have 6 monthly infusions of Rituiximab at Addenbrookes.

I developed a chest infection 2 weeks prior to the infusion and now 10 weeks on and 6 visits to the Gp, 2 courses of antibiotics, inhalers and a chest X ray which shows no abnormality I still have a hacking non productive cough, shortness of breath on exertion and breathing that sounds like 'Darth Vadour ' as I'm going off to sleep.

I wake feeling uncomfortable, as if someone is sitting on my chest and use a vaporiser in my bedroom all night.

I do not know what to do next. Gp is insistent that it's a virus and it will take me time to recover !!! But 10 weeks on, yes I'm better than I was but its just taking so long to go completely.

Has anybody any advice please and has anyone else experienced this or similar ?

I know my body and somethings just doesn't feel right.

[PMRpro]

If it were me I'd bypass my GP and contact my specialist. My daughter (who doesn't have anything as complex as WG) was given that spiel the entire winter last year "it's the time of year" - until she had an asthma attack at the practice and was blue-lighted to hospital with sats of well under 90% (not good) and her colleague hid the monitor (she's a paramedic herself). The chest consultant took a rather different view to the GP and she is now fine after a big change in medication. GPs are just that - general practitioners, and sometimes they are just a bit too general. He may be right - but he may not be and with something like WG I think it is better to be safe than sorry.

[Silentcorner]

Hi,

My WG started about 8 years ago. I was diagnosed originally with post viral bronchospasm and then treated for two years with asthma before an astute GP at my practice realised that it was more than that when I turned up one day struggling to breathe.

I too had a cough that didn't improve with antibiotics and inhalers, breathlessness and sounded like Darth Vadour as it progressed. I was diagnosed with tracheal stenosis which is one of the complications of WG. That was actually my initial symptom along with ear problems which were initially put down to recurrent ear infections. It took a long while of me being persistent to get them to realise there was more wrong with me and eventually I was diagnosed with limited WG.

I would get in touch with Addenbrookes and explain the situation to them. I had a scan which revealed the stenosis followed by a bronchoscopy and then surgery.

I hope it is just viral for you, but better to be safe.

[MAC12]

My experience of having WG with chest complications is that, even if you have had chest scans, the only sure way to get to the bottom of chest problems is to insist on seeing a specialist and demand a bronchoscopy.

Best wishes

[Skipper55]

I am a Churg Strauss sufferer and your symtoms seem the same as mine and these diseases seem to be similiar . I saw my 3 specialists on monday best in there fields in Aust having said that i hate this chest pain and the Emiritus Prof of medicine for Aust calls it GON that is God only knows and there dozens with immunology . SO I have been on metablasta that chemo tablet 50mg of prednizone for 4 days at a time then 25mg for 3 days then 11mg and a double dose of antobiotics . 10 weeks this has been going on for so we have stopped the chemo for 3 months and let the body build up its ability to fight infections and probably if the chest is not fixed and fever gone I will have to wait until the 29th of Feb next year so the short answer is they are running with steriods stopping chemo and let the body help the antibiotics as the chemo has nullified the bodies ability to fight infection.I expect to still have the pain in the chest it somehow goes with the territory.The asthma plan they have been working on is containing it although for 6 weeks it was a battle 120 endone tablets a month helped but the pain was still hitting me , I notice the first post by starmore under CSS under this great web blog has the same issues . I use a sleep apnia machine at night and my lung capacity has lifted in the last 6 months at 72% when I was well to 85% on monday and i was expecting a shocking result with the constant asthma so the plan ( asthma is working ) I was knocked over by the result , try and keep off all sugar and as much carbs as you can . I can post the asthma plan that is related to the peak flow results , the work that department has put in has been enormous. and that was in MAY this year as I was in isolation and acute care . Hospital is no longer a place we are allowed as we have no immune system and can infect other patients or they can infect us that is the result of being on chemo . I have a question as I live in Australia in August I took a big risk and chartered a yacht and sailed around corsica and Sardinia for 6 weeks and 2 weeks in Rome I was 70% well on boarding the plane after 2 days in the Tuscanny area I was so well I had balance no burning feet wlked up 400 steps and not out of breath and waled 12km in one go without side effects i am 60 and felt like i was 40 . then after returning home 1 week later Asthma started balance gone chest pains weak etc it was a 50ft yacht and my doctor and his wife joined us on boaed for 3 weeks and he was shocked , we cannot work it out now the pain control dept wants to change my pain medication to lyrica etc tried and hated that drug , but how could I be so perfectly well for so long and sick either side of it ? I cannot leave Aust as i have full medical cover and the best doctors and there home / mobile numbers and they always ring back in 2 mins

[PMRpro in reply to Skipper55]

Are you ever OK when away from home in Aus? Maybe there is something environmental in your home/locality that is causing the trouble. There was a young girl in Scotland who was OK during the school holidays but in school had constant asthma attacks - it turned out to be something in the coatings used for the wood in her classroom! I live in Italy and there are apparently a lot of things that aren't allowed here - in the way of environmental chemicals for example - that are allowed even in other EU countries.

Shame you can't come and live here - it is a lovely country even if it weren't for your health!

[Hidden]

Hi Jill,

So sorry to hear that you are feeling unwell. I think the problem with being on immunosuppressants is that it places us at risk of the weird and wonderful bacteria, fungi and viruses.

Have you had a full atypical bacteria screen, viral screen and managed to provide sputum specimens?

Atypical bugs don't present in the normal ways and just because a CXR was negative it doesn't mean that there isn't anything there.

Sometimes you need a long course of antibiotics if bacteria such as pseudomonas or some of the rarer influenzas are present. Are you on Co trioxamazole ( septrin ) antibiotic prophylaxis as that can help in WG?

If you haven't done so then I would phone the Vasculitis team at Addenbrookes for advice. Good luck and I hope you feel better soon.

[Essex-jill]

Thank you everyone for your advice. I will contact Addenbrookes and make an appointment.

I have not had any viral screening done or sputum specimen ( unable to produce any sputum)

I take prophylaxic antibiotics for recurrent kidney infections ( have renal failure too ) such as 3 months course of cefalexin, then septrin and then ciorofloaxcin.

I think I need a bronchoscopy as I had one many years ago with a similar episode.

Thanks once again to everyone.

[Hidden in reply to Essex-jill]

Good luck, Essex Jill.

I still have some nagging "discomfort" in my chest since I picked up a cold a few weeks back. It seems that the chest is a well-favoured site for autoimmune diseases.