Progressive sarcoidosis

[limbobimbo]

Hi everyone,

Hope you're all well, can anyone tell me what progressive sarcoidosis means. I'm getting increasingly anxious as I've been burying my head in the sand but the events of the past week have made me think I might be worse than I care to admit.

Thanks in anticipation Liz

[Jo_BLFHelpline British Lung Foundation]

Hi limbobimbo

Usually Sarcoidosis is acute or chronic - so either a short illness which may or may not require treatment or chronic which is long term.

Are your symptoms getting worse and what events leave you thinking you are worse than you are admitting?

If you give us a call we can arrange for you to speak to one of our respiratory nurses - 03000 030 555.

Cheers

Jo

[limbobimbo in reply to Jo_BLFHelpline]

Thanks Jo I will do

Liz

[phillips1]

Hi Liz

I noticed that you hadn't had many replies. I also noticed that the BLF survey shows that only 2% of the members have Sarcoidosis. That probably explains the lack of replies but it also means that you are very special. Keep your chin up. Love from Bobby xx

[limbobimbo in reply to phillips1]

Bobby thanks sooo much for that!

Liz xx

[Hidden in reply to limbobimbo]

There may be only 2% with sarcoidosis but that's still 6 people and the more the six of you start chatting to each other, the greater chance that more people with sarcoidosis find their way here - and soon that 6 will grow and grow - and soon ther may be 20 or 30 - and just think how much support 20 people can give each other!

So start a blog about sarcoidosis and let's see where it goes.

Mark

[limbobimbo in reply to Hidden]

Thanks Mark.

Liz

[Hidden]

Hi Liz

I'm one of the 2% on here that suffer. I've not heard the term 'progressive' but I think it's probably as Jo says. For some of us this illness will be with us forever along with the medication. I'm not sure if I've got acute or chronic but it my consultant seems to think its burned itself out but my ACE levels are still tested and I'm still on immunosuppressants. It's a horrible disease but I do think its manageable. Then again I sometimes think I'm one of the lucky ones despite the state of my lungs. Sorry I can't be of more help.

Marie x

[limbobimbo in reply to Hidden]

Thanks Marie

Liz x

[nuttiella]

Hi Liz,

I'm not sure what Progressive Sarcoidosis is either. I presume it's another way of saying Chronic Sarcoidosis? It's just a guess.

I also have Pulmonary & Cutaneous Sarcoidosis. I was diagnosed in 2009.

If you're worried, have a word with your consultant, or in the meantime give the BLF a call.

Keep positive!

Ells x

[limbobimbo in reply to nuttiella]

Thanks Ells

Liz

[LuckyGirl]

The complication of Bronchiectasis with chronic Sarcoidosis is quite common establishing the condition reducing physical ability with the consultant familiar with the case using clinical symptoms would be my advice. Some research on bronchiectasis complicating pulmonary sarcoidosis ncbi.nlm.nih.gov/pubmed/121...

[limbobimbo]

Thanks LuckyGirl

Lliz

[sassy59]

Hi Liz, you are indeed special as is my husband Pete who has had sarc for 22 years now. He is chronic (in more ways than one!) but manages to keep as well as he can and be very positive in his outlook. He is on lots of medication but just gets on with things. He also has copd amongst other things but I care for him and try to keep him well. You take care and stay positive. Thinking of you. xxxx

[limbobimbo in reply to sassy59]

Hi sassy59,

Thanks for that !

Liz xxx

[martinpatricia811]

Hi hun I am one of the 2% and I am new on hear I have chronic Sarcoidosis and my sister has it too we can talk to each other about it but would too speak to you as we don’t no a lot about it I do no that is a horrible Disease and so Restricting I am on Oxy now and carnt do a lot please feel free too message me xx Trisha

[Caspiana in reply to martinpatricia811]

Hello Martin. This post is eight years old. I hope you get a response, but perhaps you could also write a new post introducing yourself and your condition. We'd all love to hear from you. 👋😄