Bronchiectasis and Sarcoidosis

[Hetty11]

Hi everyone, just a question really. Is there anyone on here who has both bronchiectasis and sarcoidosis? I was diag. with bronch years ago but told by a rheumatologist 4 weeks ago she thinks I have sarcoidosis. I had a chest x ray and get the results on 3.10. Just wondering really? Hetty x

[Hidden]

Hi Hetty, well a rheumatologist who is also an expert in diagnosing lung conditions!

When you get the xray I suggest that if she still thinks that you have sarcoidosis you get a referral to a good bronchiectasis specialist. You should be under the care of one anyway and they would also be able to diagnose sarcodosis properly if you have it. Neither sarcoidosis or bronchiectasis can be diagnosed by xray and blood test alone.

[Hetty11 in reply to Hidden]

Hi littlepom, the suggestion of sarcoidosis is very new to me. But the bronch was diagnosed by a lung specialist many years ago by ct scan. I am happy with the management of my bronch but don't know any body that might have both, as well as mild asthma. But it does seem like the sarcoidosis will be diagnosed from an x ray which I had a month ago.

I agree with you about a rheumatologist diag. lung conditions although it seems to come under her remit as an auto immune condition. I never expected her to tell me I have reynauds either! She was staring at my fingers for a long time. Just falling apart I guess, but onwards and upwards, there's worse. I will let you all know my results on 3.10. Thanks for replying x

[Hidden in reply to Hetty11]

what a bummer. I have been reading the BLF advice on sarcoidosis. It seems to be a bit of a mystery condition. Do let us know how it goes.

[Hetty11 in reply to Hidden]

I will, I go on 3.10 so will update, hopefully get negative result.

[sassy59]

Morning Hetty, my husband has sarcoidosis and COPD but not bronch. Just want to say welcome to you. Xxx

[Hetty11 in reply to sassy59]

Hi sassy 59, many thanks, I have been reg on here for a while but don't tend to post too much. Do you mind me asking how long your husband has had sarcoidosis and how does it affect him? x

[sassy59 in reply to Hetty11]

Hi Hetty, Pete was diagnosed with sarcoidosis in 1991 so quite a long time ago.

He has been affected in many ways but mostly his lungs, airways, lymph nodes and skin. Petes breathing isn’t always great but he’s not in oxygen and does well really. He coughs a lot but that’s probably due to the COPD.

[Hetty11 in reply to sassy59]

Hi Sassy59, gosh that's a long time ago. You must be an expert on it now! It seems to be a very strange condition and reading up on it doesn't help much to be honest. I am still holding out for a negative result next Tuesday so fingers crossed xx

[sassy59 in reply to Hetty11]

Thinking of you Hetty. Xx 🤞🏼

[Symes]

Morning Hetty - I have COPD and Bronchiectasis but not Sarcoidosis. Sorry! Hope someone can help though xx

[Hetty11]

Thanks for replying Symes, which COPD do you have? Glad you don't have sarcoids x

[Symes in reply to Hetty11]

Thanks Hetty. I have standard COPD, if you can call it that. Not emphysema.

Alongside this and the Bronchiectasis, I also have asthma and Obstructive Sleep Apnoea.

[Hetty11 in reply to Symes]

Hi Symes, gosh you have enough to contend with! Bronch. is a strange beast isn't it? I went for 4 or 5 years with no infection then last year had 3 within 8 months. Its the steroids I don't like although my GP always says they are keeping you out of hospital! I don't know anybody personally who has bronchiectasis apart from on this site. People look at me strangely if I say what I have! Wishing you all the best x

[Denram]

Hetty11

I have Sarcoidosis and was diagnosed back in 1990. It has moved recently into my heart muscles and I had a Internal Cardiovascular Defibrillator (ICD) fitted in March 2016. I am now awaiting repair surgery to my Mitral Valve.

I think that Sarcoid will mask lung problems if it affects you unless the other conditions are major or advanced so many people have both but "live" with one.

Incidentally I have asthma and frequent suffer coughs etc

Cheers Dennis

[Hetty11 in reply to Denram]

Hi Dennis, thank you for taking the time to reply. I am sorry to read about your sarcoidosis. Until now, I had never heard of it. I still don't really understand the condition. I am awaiting a consultation next Tuesday to tell me if I definitely have it. My rheumatologist has written to my GP saying it is what she is thinking but I haven't had the chest x ray result yet so fingers crossed. I am more confused now than I have ever been! I wish you all the very best with your health problems, keep fighting it. x