Sarcoid for 6 years. Looking for any advise!

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Hello Guys! My name is Shaun and i was diagnosed with sarcoidosis unofficially about 6 yrs ago but they did not know where. Two years ago i had my gald bladder removed and it was found on my liver. It also affects my nervous system and muscles. Which really sucks considering that i am a fire fighter and personal trainer. I am currently on methotrexate but it causes me to catch colds a lot and the sarcoid has given me permanent bronchitis. I flar up from working out and also from stress. This is very counterproductive. Does anyone have any advise or ideas on any other medications to take. My rheumatologist is use to seeing older ppl that are not in the shape that Im in, So he always assumes that I am fine.This is very depressing but as bad as it sounds it feels good to know that I am not alone.

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  • Posted

    Hi Shaun ~

    I was dx'd in 2005 via biopsy of lungs and lymph nodes.  I'm just confused as you stated that your sarcoid was "unofficially" dx'd.  There are definitive testing to be done with sarcoidosis.  Perhaps you don't have it and possibly treating you for something else?  I know firefighters are in the line of fire(no pun intended) and get many things we haven't heard of...at least what I've experienced from my firefighter friends.

     Rheumatologist control the sarcoidosis meds as this disease is inflammation of a particular part of the body.  I was on steroids for 2 yrs.  Then on methotrexate and plaquenil for another year, while both made me nauseated, it was better than the secondary problems from steroids.  It went into remission.  It's back with a vengence but my immune system is shot from another autoimmune disease I have.

    I'm not sure if I can help but this site is good for other's to chim in and add their experience or suggestions.  And, no, you are not alone.  It's a horrible disease and those who don't have it, seem to think we look ok, why are we NOT ok!! because we aren't OK!! lol

    Anyway, I'll be happy to help if I can and when I can so keep the questions coming and when I see my Rheumi, I'll ask their opinions as well!

    Frustrated

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  • Posted

    Also, with all due respect, it's a disease of the younger person.  Older people can and do get it but in general it's from ages 20-40 and fitness has nothing to do with it either.  I was fit and trim and working out daily.  In an auto accident that left me with many, many sleepless nights and that's when the immune system went down.  That in light of many surgeries, put my body at risk for this nasty disease to take over my body.  It can get better.  Be prepared for that, too!  However, it does stay in some.  Being in the business you're in, late nights as a firefighter, most likely put your body at risk with lowering your immune system.  Please enlighten your doctor and let him know it's not a disease of the old!  ha! sorry wish I hadn't re-read that part.  I'm not laughing at you, this sucks really.  I'm laughing at the care we get in this day and age and the hole we allow our doctors to dig in and what they say is okay.  Try another Rheumi.  That may help?!

    Good Luck, Shaun!

    Let us know how you're coming along

    Frustrated

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  • Posted

    Hi Shaun,

    I know what you mean.I also look good; people can't say that I'm sick. My doctor also used to say that I'm fine. However, she changed her opinion as soon as she saw my lung function test results and x-rays. Additionally, most doctors are telling patients that they look good so that they don't feel discouraged.

    And yes, as you may already know, I suffer from lung sarcoidosis.

    Regarding the treatment, I don't know what to say. My doctor puts me on prednisone for several months whenever I have a serious flareup. I usually have my blood tests done every six months (especially angiotensin-converting enzyme (ACE)). If ACE levels are high (about 40, when they should be around 20), my doctor puts me on prednisone. However, not all people respond to prednisone. Unlike other drugs, prednisone is, let's say, considered "mild" if we could call it this way. If it's taken for a short time (3-6 months) it's not that dangerous.

    The fact that you catch colds too often is NOT a good sign. It may be your immunity, which is too low. This may cause many other (serious) problems. I'm not a doctor, but I have plenty of experience. In my case, low immunity ended up with a superinfection with tuberculosis, which took 20 months of very strong drugs to solve. Now, I'm very careful when I'm on immunitysuppressive drugs. I always ask my doctor when we are going to adjust the dose and stop the treatment. However, in my case, there is also a high risk of TB recurrence during prednisone treatment, so my doc is very careful. You can have some blood tests done to check your immunity.

    About nerve, muscle, and liver problems, here is what methotrexate can cause:"Methotrexate may cause severe and sometimes fatal side effects. These may include infection or stomach, bowel, bone marrow, blood, liver, immune system, nerve, lung, kidney, or skin problems." Thus, your nerve, lung and even part of liver problems may be caused by the drug you take.

    And yes, it's normal to flare up when you're working out and going through a lot of stress.

    One more thing: you should have your lungs checked by a pneumologist. Usually, sarcoidosis affects lungs, so it may have spread to your lungs as well. That "permanent bronchitis" can be a sign of lung sarcoidosis. And yes, recurrent "colds" can also be a sign of sarcoidosis. During flareups, I usually feel like I'm with cold; I even have low-grade fever (37.2 - 37.3 degrees C), I cough more, but these are all symptoms of lung sarcoidosis. As well, if you feel very tired after working out - or without working out (sarcoidosis can cause fatigue) -  and have any respiratory problems (difficulty breathing, or if you feel that you don't get enough air, or if your fingertips/lips trun slightly blue), they could be related to lung sarcoidosis. You should see a pneumologist and have some tests done (lung capacity + x-ray, at least) to make sure that your lungs are ok.

    And yes, sarcoidosis sucks. Due to this disease and its complications, I am unable to work. I can't do too many things around my house either and I'm not allowed to go outside if it's cold - so, i'm a stay-at-home wife during winter smile. I currently have a small invalidity pension and keep myself busy with hundreds of things so that I don't have time to pity myself.

    I really hope that you'll find the strength to go through everything...

    All the best,

    Magda

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  • Posted

    Shaun

    The advise the ladies have given you is excellant. So, I am only going to reinforce it.

    Bloods, get your ace and ferintin levels checked

    Xray and CT of lungs

    Confirmation of sarcoid via lung biopsy

    Full respiratory lab test...these will tell you alot, especially as you are so fit.

    At the moment you are only guessing, this needs to be remedied.

    After doing all of the above you will have a much better understanding of your health and start planning your future.

    Tangles

     

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