Acute or chronic sarcoidosis

Hello, Sarcoidosis is an insidious disease in that it can attack any organ in the body, including the skin and bone.

When it attacks, it assumes the symptoms and characteristics of other diseases. It is this, which makes treating Sarcoidosis so complicated. You are not able to actually treat the Sarcoidosis, only the damage it inflicts. Some doctors and specialists call it an auto-immune disease, because it is the immune system attacking your own body other doctors call it a connective tissue disease. The tissue that effectively holds you together and seperate other organs from one another.

Sorry to hear about your suffering but do I take it that you feel better than when this started? I hope that's the case. So, you're not taking any meds any more?

Hello Chief, it doesn't get any better, does it. 

I feel much better I've had No Steroids or Prednisolone since 1992, but in saying that I take caution if I have a Common Cold, Hayfever or Sinuses are playing up with what happened to me about 10 years ago I copped a bout of Pnumonia the only tell teale sign was I had had heavy congestion for about a week (but I have congestion most of the time) anyway I collapsed up in the mountains whist cutting some wood also I was losing energy for some reason anway to cut it short I was addmitted for 3 days to drain fluid out of my lungs the Dr said I was to from now on I must come in earlier if this were to occur again as it could have killed me.  Seeing my lung capacity is only at best running at 75% been that way since that will never improve but must keep my breathing exercises keep them working so each year I must not forget my flu shot which I had not done prior to that episode, I'm only taking the usual blood pressure med's but take Sandomigran for my Bad Migraines, always had them before the Sarcoidosis and only recently taking a Cholesterol tablet & Vitamin D replacement as the Sarcoid has depleted my Vitamin D in my body also increased my Calcium output I'm also on Nexium plus one a day as I have had bad reflux ever since the early days of Sarcoidosis could have been the strong Steriod/Cortizone medication treatments I was on that caused that to happen, I have regular check-ups a big one each year for Bloods, Urine and X-Rays but see the Dr every 2 months or so but more so as my Wife sees him he will ask me how I'm going, he's a very good Dr and knows about Sarcoidosis as he had done a thesis on this when he was a training to become a Dr over in England.  Today I would class myself much better but still feel like death at times but I just keep a positive outlook and have a better understanding of my triggers and when to get assistance if I'm really under the weather which in truth not that much these days as I have some support around me for back when I was diagnosed they were still pulling at straws and hoped that throwing heavy meds would fix it yes it did in some ways but I had the side effects and still show some to this day but on a scale 1 to 10 with ten being the worst going back to my darkest year in 1986, today I'm about a 1 or 2 today so yes I have somewhat got better but Sarcoidosis effects different things in different parts of the body and can effect each person differently, for my 31 odd years I personally know nobody apart from forums like this as it's still a lot of unknowns but I'm happy to share my experiances with those that have this horrid disease but I always have hope that one day there will be a cure for us but most of all I stay Positive in my life.

Hello Chief, I have read your posts with interest. The thing that strikes me more than anything else, is the similarity of the symptoms.

My thoracic specialist said, exercise is crucial and pleased when I told him I go beachcombing every day. The sea air, the sounds and the environment have a thereputic effect.

Have you tried Pantoprazole to relieve reflux? I take that regularly to stop the constant feeling of a bloating stomach. It especially helps when I have to take the heavy doses of Prednisolone. The nausea I have taking that is beyond the pale.

I always get my 'flu shots every year. And renew any other vaccinations, because I know that if I get an infection I will be in a lot of trouble.

I have a theory on the rarity of Sarcoidosis. Because of it's ability to mimic the symptoms of other diseases and attack any organ of the body, you have to wonder if the disease being treated is in fact Sarcoidosis. The symptoms are so variable. I know the ones applying to Pulmonary Sarcoidosis and Uveitis, but are there common symptoms for other parts of the body?

Thank you for sharing your experiences, Chief. All the best.

Well Chief,  I just want to say that I'm really glad you're feeling better now even though I see that you still have a lot of issues that you still deal with. 30 some years of this sure is a lot of suffering to go through. I hope I'll have the strength that you have if my illness gets this bad. This illness is like hell from what I've read so far yet hardly any doctor seems to take it seriously.

So you're not taking any meds to treat the sarc. Reading some of the pieces on this illness they make it sound like taking cortisone is a must or we're dead.

I hope things get even better for you and for us all. Thanks for writing about your story with this illness. All the best to you.

Hi zss,   Yes my reflux is a prescription medicine only, Nexium (esomeprazole) my reflux has something to do with 3 things that may have occured: the closure of the glottis being impaired (hardened) either because of the steroid treatments, the Sarcoidosis itself or where they had cut for biopsy to remove Lymph nodes in my lung trachea as there is a now ridge of scar tissue where they cut and it has healed not far from there.  Yes I keep fairly mobile as a Sports Trainer and a carer for my wife and keep to a lean sort of diet most of the time keeping away from processed foods most of the time, I moved to the Country away from the Big Smoke of Melbourne and found my Hayfever and Sinuses are managed so much better for in Melbourne I was near on eleven months of the year with those problems but here in the Country maybe lucky to be 1-2 months it may effect me due to the triggers like Pine Pollen which is one of my triggers then there is Mold and Solanaceae Family being Deadly Nightshade, Wild Tabacco plant which can knock me for six, but the Tomato and Potato plants from that family are fine.  As for the Mimic that's correct some people may have been treated for other things like TB as it mimics this, with myself they needed to eliminate 5 bad ones being: TB, HIV Aids, Sarcoma, Leukemia and some rare form of lung cancer after all the testing and there were heaps taken from every part of my body nothing was missed which was at times very embarrassing for me with the tests and the questioning from Specialists of why I was like this, scared the hell out of me also at the time I had no one to talk to apart from my Father for a shoulder to put my head on as half my family ignored me they thinking I was trying to get attention or putting it on and my so called mates ignored me thinking I had some sort of infectious disease they stayed away, so very hard & trying times back then but got through the hard stuff, the only tell tale signs I show from outsiders to ask if I have, you got chicken Pox or Measles? (due to my blister pimples) plus I tend to scratch a little or rub my eyes a bit which then become darkened like I'm wearing black eye shadow so I tell everyone not be alarmed I'm still going through puberty lol but there are more people now that listen to what I have.  That's another good thing that has kept me going forward is my sense of humour for being able to laugh at one's self does help quite a bit.

Hello Chief, I live in the southern suburbs of Adelaide. Right now, I'm trying to finish a room I'm renovating. Illness had slowed things up considerably, actually it's come to a stop. When it's finished....... I intend to resume my Uni studies in electronic engineering. I also renewed my interest in RC model aircraft, this time NO internal combustion engines. Everything is electric, it combines both my interests in electronics and aerospace. These are what is keeping me going. I will get there eventually.

BTW, tangles is a resident of Melbourne. He's in this thread further up.