Duration and signs of flare-up

I have pulmonary sarc, though never biopsied (only x-ray, CT scan, lung function tests - enough to know I guess). I - and my pulmonogist - believe the disease has been in remission for last few years.

I believe we are correct in this determination, but I seem to be tired ALL THE TIME these days, find myself always sweating far more than others around me, and seem to suffer daily with bouts of "brain fog".

Admittedly, this could come with middle age (I turn 45 this month) but I am finding it to be a condition not exactly conducive to productivity in my line of work (okay, I'm a lawyer...).

My question to those of you with active sarcoid: what are the first signs you are having a "flare-up" and how do you know, if you can know, that it has passed?

I can only think back at my bad times to determine the periods the disease was active. I pray mine stays in remission, but am curious whether I'll be able to recognize when and if the disease has decided to act up again.

Thank you all for sharing,

Terry

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Hi Terry, I have never been in remission so not sure how to tell when you are getting a flare up. However, I am always tired and suffer the same brain fog you describe. I also have a very difficult time regulating my body temperature, I went as far as to get a prescription deodorant that seems to help only minimally. If cost wasn't a factor, i would get the botox injections in my underarms, I guess that helps a lot of people with excessive sweating.

Hopefully someone else will come along with more useful info!

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Hi Terry, I, too, have pulmonary sarc. Lately, I seem to be tired a lot, and some coughing spells have returned. My doc is very gradually decreasing my prednisone dose (currently alternating 6 mg and 10 mg daily), and I attribute the fatigue to the lesser dose. Maybe a decrease in meds is causing your fatigue? Not sure about remission or flare ups, as I seem unable to get below a certain dose of pred. Good luck!

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Terry--

My ankles act as a good barometer for sarc weather changes. I'm learning to jump on a flare right away with ibuprofen and sometimes pain meds.

Fatigue, lethargy and depression usually come with the ankles.

You know, it is like having a process server from your ex's atty show up while you're in the bathroom.

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Hi Terry, I have neuro and pulmonary sarc. Both biopsied for confirmation in July of 1997. I've been in remission twice but mine usually gets found in the eyes first. Oh yeah, it's in my eyes too. Last year I went in for a regular check for my eyes and it was back. I had no symptoms except the doc could see it in my eyes with inflammation in front and behind the eye. While I was doctoring that it went back into my brain and I didn't know who I was or where for 5 months. I always get caught off guard not realizing it's back. I'm always worn out so I can't use that as a sign. Guess I'm not much help, just thought I'd get my two cents worth in. Also I read your bio. Welcome back to the church. It's a great place to come home to isn't it? Hugs, Kathy

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Hi Terry;
I too have pulmonary sarcoid, first diagnosed around 98 - 99. It was in remission for several years but when I had chest pains and massive breathing problems a couple months ago, I mentioned it to my doc - just happened to be going in to see my gp that week. The chest x-ray told the story. After doing research I have learned that a lot has been learned about sarcoid since I was first diagnosed. I now look back and can say "that was probably sarcoid related" about tiredness, brain fog and general aches and pains. The breathing is what gets to me most, but I'm glad to be able to put a cause to the other things. There were times, especially with the brain fog, that I felt useless and stupid. Didn't know what was going on. I'm on advair now and that is it. My choice because I don't want the weight gain associated with some meds and my job is a sit down (probate paralegal - we have something in common) so I don't have to rush around like some people do. Oh, by the way, when is your birthday? I'll be 47 the 27th of this month. I don't turn the everlasting 39 for 3 more years. LOL

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Terry,

Probably about 1/3 of all sarc sufferers have liver involvement, though it is seldom definitively diagnosed. When your liver is affected it can cause an overall feeling of malaise and fatigue, and sometimes fever - which could be causing the sweating. Before my diagnosis I was having frequent bouts of night sweats -- and inexplicable sweating at odd times throughout the day. I thought at the time it was menopause setting in (I'm 51), but the night sweats only lasted a few months, and I haven't had them regularly since then (no menopause!). My doc said my liver was enlarged and it appeared that there were granulomas throughout the liver and spleen, which were more than likely contributing to the sweating and fatigue (yeah, I had that too). So, you probably just have some other organ involvement.

Drink lots of water and wait for it to pass :)

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I am quite a bit older than you are and also had brain fog and tired all the time--it was sleep apnea, and no, I am not overweight--it is a common problem that seems to go along with sarc.
My sleep apnea was so mild we considered not treating it--however after a trial of sleeping with oxygen we found the brain fog and tiredness improved greatly. I no longer use oxygen but have CPAP to keep me breathing at nite---sometimes it comes off and then I wake up tired--but most of the time the brain fog is gone and tiredness is greatly decreased.
good luck--I was really resistant to this but I now think of it as a blessing
cc

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Annie G - I am very fortunate not to need any medication for sarc at this time. I believe the sarc has been in remission for many years. Which is good, because it's allergy season and I'm tanked up on Allegra and Nasarel (I know these are comparatively mild to what some of you are taking). I hope you, too, will some day be able to say you are in remission - I guess this is the most we can hope for?

Kathleen – could you tell me more about your neuro sarc? Was the biopsy of that as involved as I am imagining? Sorry about your eyes as well – I am beginning to experience some changes in vision, and am having annual eye exams with a doctor familiar with sarc and willing to use retinal photography to watch for changes. Any suggestions on any other steps I might want to take? And yes – mother Church welcomed me back with open arms after 20+ years away. May I never stray again...

Jmaze – can I take it from your story that there were noticeable changes in your chest x-ray? I sympathize on the breathing problems – it is frustrating to get so out of breath simply by pulling weeds or raking grass in the backyard. By the way, I do almost solely probate work, so we DO have something in common. I agree it is good that most of our "deadlines" can be seen months in advance, but it is too bad we have to sit around at a desk all day. And I'll be 45 on June 29. Hi to your Hubby for me – I was in the Army from 1983-1987 and if I had stayed in (I was a 98G2LKPK3 if I recall all that correctly) I could have retired at 20 years five years ago (that's scary...).

Cindy – thanks for the heads up on the liver issue. In fact, after I my physical last year the doctor called me back for extra blood work because the first results showed slightly elevated total bilirubin. Hmmmm. My little brother has Gilbert's Syndrome, which I believe is primarily a liver condition, but I never even thought that this might be sarc-related. How was your doctor able to spot the granulomas in your liver and spleen? I assume a CT scan?

CC - I have often thought I could use a "hit" of oxygen every now and then with the vague idea that it would help clear the "fog". May just be my innate dimwittedness, though 8-)

Thank you all for continuing to share your stories - this really is wonderful website.

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Hi,
I have pulmonary sarcoidosis and I'm thankful that I don't have breathing issues. Although I haven't had anything new going on in my lungs (had a CT scan recently), my blood calcium levels are elevated so I know it's not gone. I'm actually pretty healthy but my symptoms appear when I'm stressed or don't get enough rest. My flares start with swelling and pain in my ankles, knees, and feet (like today, for instance). Sometimes my skin will hurt (like I have a bruise or scrape). Or, the nodes on either side of my neck will swell and I'll have a low grade fever, swollen tonsils, and feel achy and exhausted.
I hope this helps.
Sabrina

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Hi Terry;

What's a 98G? My hubby was a 54B. Chemical Warfare. Anyway, yes, there were changes in my chest x-ray. When I was first diagnosed the chest x-rays showed the sarc and the biopsy confirmed it. But when we retired here to FL almost 7 years ago the x-ray was clear. I was having a lot of dizzy spells and was tired, achy, felt like I was going to pass out a LOT but my pulmonary doc didn't know what was wrong and said the x-rays were clear so my sarcoid was gone. Obviously since then a lot of better information has come out. Based upon what I've learned lately, I'm guessing that sarcoid was just acting out in other areas of my body and was giving my lungs a break. Never really know though. Now it is back in my lungs and this new doc I have (military doc's always pcs'ing) doesn't seem to know too much either. But, to be fair I haven't been to see a pulmonary in 5 1/2 years because I thought it was gone. I'll see her again next week and after reading things on this site, boy do I have some questions for her...LOL

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Jmaze -
A 98G is now known as a Cryptologic Linguist, though in my day I think we were called Electronic Warfare Signals Intelligence Voice Intercept Operators (I think I like the shorter version...). I sat on the Korean DMZ with headphones on - but I'm not saying what I was doing!

The official and unclassified job description: "The Cryptologic linguist performs and supervises detection, acquisition, location, identification, and exploitation of foreign communications at all echelons using signals equipment. Translates, transcribes, gists or produces summaries of foreign language transmissions in English/target languages."

That's all I can say about it until the year 2057, at least according to the NSA-types who gave me my discharge intereview. Right...

Are you saying your xrays were later clear after having showed the sarcoid at diagnosis? You should see my xrays - I suppose what I'm seeing is scar tissue, which continues to effect my breathing even thought the sarc is now dormant. There's way too much to learn about this stuff, huh?.

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Yes John - the granulomas and enlarged liver were determined by CT scan.

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Gee Terry, from the DMZ to probating estates...think you could have found two careers that were a bit less similar?
My hubby spent a year on the DMZ. Gave him some great stories but otherwise he wouldn't recommend it as a tourist destination.
And yes, in 01/02 my chest x-rays looked clear even though I was having the faintness, aches etc... I had a couple years where I felt Great, not a problem at all, so I guess I was in total remission then. Wish it would have lasted.

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J-

And in between the two jobs I actually spent time working in a Pickle Laboratory.

(never eat the sweet relish...)

8-) Good weekend, all!

Terry

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I too have fatigue and "fog brain" (as you called it) symptoms; however, this is much less since my doctor started me on Provigil and Plaquenil and I have seen no side effects from these medications...I know quite wonderfully amazing. I wonder if Sarc is ever in remission? I know they say this, but Sarc has a mind of it's own and tends to flare up when ever it feels like it with no rhyme or reason sometimes. They tried me on Predisone and like everyone had the awful side effects. Do you have fevers? I use to be able to tell what kind of day I was going to have by checking my tempature in the morning but I only check it occassionally now. Hang in there!

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I have Sarc in my skin only. It has been controlled at times, but never in remission. When it flares my legs swell up out of the blue and nothing helps reduce the swelling. I also get hot flashes around 11 pm.

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