Hi, my husband has been diagnosed with sarcoidosis of the lungs. He is not on steroids but has to be minitored every 6 months. He is 52 years old.
He was given a PET scan and spirometers test. His lung age is 80 and has a decreased lung function. Any information on natural remedies that could help would be great.
Can people live long lives with this condition ??
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I don't remember many members on here with sarcoidosis, but the BLF website has some information. Give the nurses a call (info on the website), they are very helpful.
I have it in my lungs. I am 45 and have a lung age of 113 - but I consider this pretty meaningless unless me and my friends want to laugh about it. I work full time and try and keep as active as possible. it seems odd he is just being monitored without the prospect of any drugs. I agree SILA is probably the best place to go.
I know a few people who had it many years ago and are free from it, it can also go into remission. It depends if it is acute or chronic too.
There are a few people on here who have had it for much longer. If you are concerned speak to the consultant at the hospital too.
Marie x
I have a good friend who has it,among other things.A good diet and as much exercise as he can tolerate will help keep it at bay.Worrying won,t make it any better so try not to,best of luck! D. 💐
Good evening Rigge,
I have Sarcoidosis along with Erethyma Nodosum and it is knocking my life for six at present. I have been on a course of Prednisolone for it but that didn't seem to help much. The consultant wasn't sure where to go from there so I asked to be referred off to see an ILD specialist and have an appointment at Newcastle RVI next month. It was the BLF who suggested and ILD specialist so if you have any concerns I would suggest giving them a call and asking to speak with a specialist nurse as they are extremely helpful, also as previously mentioned the SILA site is good. X
Both the RVI and freeman are excellent. I wonder if its Dr Forrest you will see at the RVI? He is excellent.
I am sorry to hear things aren't great for you - I do feel that I am lucky with this disease considering the suffering I see others going through though.
Mx
Hi Marie, I'm not sure if it's dr Forrest or a member of his team that I shall be seeing but I understand from my GP that after the initial meeting they will be holding a multi team meeting to work out the best plan of action. I also have a barrage of other consultant meetings coming up following various scans. Thought last night that I would book a flight to Switzerland as I'm so fed up with it all but then today one of my sons made me laugh so that made the world a better place, even though when I laugh I start coughing then choke hahaha.
How are things with yourself Marie? Are you any further forward with new lung side of things? Xx
Are you from Newcastle area Marie? Xx
I'm in east Cumbria so its my nearest centre. Nowhere near new lungs yet. Still too heavy but doing a lot of swimming. Swum 5km last week. I could do with a month in a health farm eating only salad so when I am next at the Freeman they will be pleased with me!
Good luck with the appointment(s) - they are an excellent bunch.
marie x
What is ILD specialist stand for ??
Hi Rigge, ILD stands for Interstitial Lung Disease... Hope I have got that right xx
Any concerns the BLF are fantastic to talk to 😊
Thank again everyone. He is doing well on the symbacort and also has an inhaler.
He has to go back to the doctor every 6months for check ups.
I am particularly happy to hear from the people who have had it for a few years. that has been the most comforting and hope that will be the case with my husband !
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