Invasive aspergillosis/sarcoidosis

[marypoppy49]

Hello

I’m feeling a bit fed up with being ill

I suffer with sarcoidosis of the lungs and invasive aspergillosis

I was diagnosed about 13 years ago since then I have been on voriconazole and steroids and a concoction of other drugs have been told I have holes in my lungs and I often get lots of chest infections and I am always breathless I have home oxygen and a home nebuliser I recently had a bad chest infection and I was put on doxycycline twice a day and co-amoxiclav 500mg three times a day

They help to a certain extent but I now feel much more breathless that I ever have I can’t seem to get rid of it

I have tried using my nebuliser and oxygen more but it seems to make no difference I’m now at times even short of breath at rest I am struggling and pretend that I’m ok because I don’t want my family to worry but inside I’m very scared that I will be left like this

I’m not sure if my condition has got worse and there is nothing anyone can do!

I often cough up blood and I’m worried I will have a long very uncomfortable death

I get lot of other aches and pains all over my body at times such as bad eyes pain in my ears , chest pain and joint pain I never know if this is because of the sarcoidosis or asergillosis

I am under the Royal free hospital

Mary

[sassy59]

Welcome Mary, I’m sorry to hear of all your health issues. I am carer for my husband Pete who has sarcoidosis (1991) and COPD plus other problems.

If you feel things are worse do contact your doctor and tell him how you feel. Always get any chest pain checked out just to be on the safe side.

I do wish you well. Xxxx

[marypoppy49 in reply to sassy59]

Hello

Thank you for replying sorry to her about your husbands health issues it’s nice that he has you to care for him

Thanks for advice i have an appointment next week and I’m hoping they can suggest something or have an answer to this

[sarcoid1234]

Dear Mary. I too have sarcoidosis (38 years) and for the last few years have had holes in my lungs, but I don't think I have aspergillosis. The Royal Brompton Hospital prescribed me azithromycin 25mg on Mondays, Wednesdays and Fridays on going and this has kept most infections at bay. Many people on this forum have said that they take this three times a week. Perhaps this may help you.

Someone in today's posts said that even if you use a nebuliser you must also do Active Cycle of Breathing (huffing) to cough up the phlegm. (Lots on the internet). I do both every evening and most mornings.

If your eyes are sore, that may be because sarcoidosis causes dry eyes excessively. I am prescribed jelly like eye drops which I insert three or four times a day.

Also, please know that The Royal Brompton Hospital says

rbht.nhs.uk/patients/condit...

Can I take vitamins and supplements? You should avoid taking vitamin D, as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis.

I do hope you will be feeling much better very soon.

[marypoppy49]

Hello

Yes thanks for your reply

Sorry to hear you too have sarcoidosis

It’s lucky you don’t have aspergillosis as well

I take azithromycin like you I have taken it for the last 5 years I definitely think it helped me in the beginning but now I seem to be getting more chest infections and more episodes of coughing up blood which is scary because you never know when it will happen

I also have had my cataracts removed and laser treatment to stop clouding of the lens and now I have manacular degeneration. I have been taking vitamin d because at one point my doctor told me I was vitamin d deficient but I will ask them to check my levels again

Thanks for information

Take care stay well!

Mary