I'm new here.

[missscarletwithabun]

Hi, All, I have just joined this group and would welcome any chat about Sarcoidosis, I was diagnosed last year and suspect it could be genetic, so if anyone else has similar I would be chuffed to chat, as so far I haven't met anyone with the same thing..

[sassy59]

Welcome missscarlet, my hubby Pete was diagnosed with sarcoidosis 25 years ago and it is not genetic in his case. He takes 5mg of prednisolone each day plus lots of other drugs for other conditions.

On the whole life is good and we take each day as it comes. Try and take good care of yourself and be as well as you can.

Nice to meet you. Feel free to ask anything and l will try and help if l can. BLF do a leaflet on sarc so may be worth requesting one. Xxx

[missscarletwithabun in reply to sassy59]

Thanks, Sassy,

So far I haven't had any medication as my Specialist is hoping it will burn out over two years...he is an optimist!

I am curious to know exactly how your husband was proven not to be of genetic origin?..I am sure my Mum had it plus my Grandfather, they both died swiftly of unspecified cancer which wasn't cancer..as far as my observations while nursing them concluded.

& they both exhibited my symptoms over a long period without getting the real diagnosis..

We shall see if I am right pretty soon.Thanks for your reply, it's a massive relief to speak to someone who knows what we go through, as people take a look at me and dismiss my illness as fantasy!

[sassy59 in reply to missscarletwithabun]

People are ignorant unfortunately but sarc is not a fantasy by any means.

When Pete was diagnosed we had never heard of sarcoidosis and his father died of emphysema and grandfather of throat cancer so no specific link. Petes mother is still alive but has dementia.

Our three children have wondered about sarc being hereditary but we are unsure about that. Your doctor could be right. Xxxx

[missscarletwithabun in reply to sassy59]

Well it is in the lap of the Gods at the moment, but my Gp has offered to give my only son a test, which I think is a good move, as he had asthma & exzema as a child and has some food allergies which he is aware of...I forgot to say I am also Coeliac..which I believe can be part of the collection of maladies which lead from one auto immune disease to another..

[sassy59 in reply to missscarletwithabun]

I would be interested to hear about your sons test results. Good luck xxxxx

[Jessy11]

Welcome to the forum missscarlet. I've no experience with sarcoidosis but sassy will be able to advise you. Just wanted to say hello & hope you'll join in with us on this friendly site 💐

[louiseBLF]

Hi there, we have some information about Sarcoidosis on our website, its actually more common than you'd think. blf.org.uk/support-for-you/...

[sassy59 in reply to louiseBLF]

Yes it certainly is now Louise and the info on BLF is worth checking. Xx

[mrsmummy]

The Foundation for Sarcoidosis Research (USA) says

"The fact that a person is more likely to develop the disease if someone in his or her close family has the disease strongly suggests that genetics plays a role. Researchers have not discovered the genes for sarcoidosis yet, but it seems likely that more than one gene is involved."

stopsarcoidosis.org/awarene...

[sarcoid123]

1. Many people have sarcoidosis for 1 or 2 years and then it completely clears up. That is a documented fact, and I have a friend in that category.

2. I have had pulmonary sarcoidosis (of the lungs) for 37 years and have always read that it is not genetic. No-one in my past family has suffered from sarcoidosis.

3. That webpage which was mentioned, from the American organisation stop sarcoidosis is very depressing and would be very worrying for a newly diagnosed person. I have never had most of the symptoms listed in the stopsarcoidosis webpage.

The stopsarcoidisis website says "Some research suggests that bacteria, viruses or chemicals might trigger the disease. Although such triggers might not bother most people, it is possible that in someone with the right genetic predisposition they provoke the immune system to develop the inflammation associated with sarcoidosis." which in my opinion does not mean it is genetic .

4. Several firemen after 9/11 developed sarcoidosis from the dust. This is just one of many webpages sarcoidunited.blogspot.co.u...

5. You could read the website of The Royal Brompton Hospital in London, which has a specialist sarcoidosis department. And also look at the links from the left hand side of the page. rbht.nhs.uk/patients/condit...

Especially, read "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. "

6. Also, if you take higher dose prednisolone steroid for a long time you should ask for something also to protect your bones from osteoporosis. I didn't know about this and have osteoporosis.