Re: Sarcoidosis Explained

[Guest guest]

Hi Mona,

Sarcoidosis is an autoimmune disease. What that means is that your body can't make the distinction between what is healthy tissue and what needs to be healed-- like a cut. The scientists don't know what causes sarcoidosis, or how to cure it.

It is a disease where our immune system sends out white cells to take care of an infection, then our immune system follows up with TNF-a and TNF-b cells. Each one cleans out the process of the previous one.

For some reason, we don't clean out the old cells, and the followers end up building one on top of the other-- and form granulomas.

For most people, they may never know they have sarcoidosis. However, for many of us, we end up with it in our lungs-- and may have been going to the doctors for respiratory infections for a very long time. Finally, someone orders a chest xray, and there is the "etched glass" look -- a sign of sarcoidosis.

There are multiple stages of sarcoidosis-- Stage 1-- is where you have some minor infections, but a short dose of prednisone or solu-medrol, generally gets it's under control. You may have some intermittent periods of shortness of breath, and your docs, as well as you yourself, will blow it off as seasonal allergies, or maybe mild asthma.

Stage 2-- You've started having more problems being short of breath, and maybe more intense repiratory infections-- and you may have some lymph pain around your chest. It's become a more common problem, without many breaks between treatment. There is minor scarring of the lung tissue, and this makes it harder to get air across the lung tissue where it's picked up by the red blood cells and taken as oxygen to your body. Fatigue is starting to become an issue.

Stage 3- Pulmonary function tests start showing a problem with DLCO--Diffuse Lung Capacity Oxygenation--- as your lungs are now scarring (much the same as pulmonary fibrosis) and you have a tendency to not be able to get the bad air (carbon dioxide) out of your lungs unless you learn to REALLY FULLY EXHALE and blow that air out. You may have some numbness in your hands and feet-- as your body needs the oxygen to keep the vital organs alive, so it cuts back the amount that goes out to your extremities. You may need supplemental oxygen during exertion.

Stage IV. You have significant scarring, lung capacity has dropped down (ie. mine is 64% of normal) and you will need supplemental oxygen full time. This level gets trickier, and you may develop pulmonary hypertension where the heart demands more oxygen than the lungs can provide-- and eventually the huge vessel that goes from the lungs to the heart has to thicken to hold the extra blood pressure. As it thickens, it narrows from the inside, and this can put you at high risk for a blood clot either in the lungs or heart. (I've been in Stage 4 for 8 yrs now and yes, I do have pulm hypertension.)

Normal healthy lungs look like your new kitchen sponge-- and with sarcoidosis, ours beging to look like the sponge needs to be tossed out, as the cell membranes tear or fibrose (scar) over. Mine look like the sponge that is falling apart, and so old that it can't absorb much-- I've only got 2 (out of 5) healthy sections left.

Sarcoidosis can affect any organ. Lungs, eyes (iritis or uveitis), liver, kidneys, muscles, joints, ligaments, bones, heart, nerves, -- it doesn't care. Somehow, the signal got sent that there was a problem, the immune system kicked into hyperdrive, and even if the problem has long gone, your immune system isn't shutting down to normal.

Fatigue-- not "I've had a long day" fatigue, but exhaustion that will make you feel like that one time you had pneumonia as a kid was a calkwalk- fatigue; is huge. Body aches and pains--- the docs will tell you it's fibromyalgia, or arthritis, or chronic fatigue syndrome-- (and it may be) but it doesn't let up.

Sarcoidosis loves our hands and feet and ankles. It is a form of sarcoid-induced arthritis, and anti-inflammatories do help.

This disease mimics Multiple Scleroisis, Rheumatoid Arthritis, Peripheral Neuropathy, Dementia (neurosarcoidosis), Fibromyalgia, Chronic Fatigue, all wrapped into one.

Most people do not get sarcoidosis to that extent-- and for those of us that do- we will be needing to learn to pace ourself, rest when the body dictates, take multiple anti-inflammatories, and immune suppressants. Generally the docs start you off with high dose prednisone, and then as they wean you off- and your symptoms return, they need to add a different immunosuppressant-- Ie. Imuran, Arava, Methotrexate, Plaquenil, or the bigger guns-- Humira, Enbrel, Cellcept, Remicade.

It is important to start with the least offensive, and add or adjust as needed-- one at a time. That way, if you've got any side effects from the meds, they can figure out what is causing it.

Hope this helps,

Tracie

NS Co-owner/moderator

Subject: Hello AllTo: Neurosarcoidosis Date: Tuesday, March 31, 2009, 9:41 PM

This past week has been so bad for me. The prednisone is really messing me up bad. I'm starting to swell in my face real bad and in my feet. My moods are so bad. One minute I feel like climbing the wall's the next, depressed and in tear's. I get confussed alot to. As I've said the sarcoid is in my lung's. I guess my question is does it effect you all over your body in someways even though it's only been seen there? There is so many many unanswered Question's I have about all of this still. I'm still scared in many way's. I feel like my family sometime's get tired of me alway's finding some new kind of problem almost everyday. It's been about 2 month's since my doctor said oh it's back second stage we have to hit it hard, so it does seem like there is a new problem everyday now, I haven't had to face it like this before now. I feel like I have a long road ahead, I worry about the long term prednisone

I may have to take, right now he said maybe 2 month's at 50mg, but by everyone I've read about or talked to it has been alot's longer. Is there any advise out there that any of you can send to my family and maybe help them to see what a nightmare this is to all that has it. I worry about how they feel. I know there are many question's they have also and I'm not much help at all right now. Please if anyone can help out with my family and help them understand alittle more please write them I will make sure they read it. thank you Mona