Acute Saroid?

I had never heard of Sarcoidosis until a rheumatologist told me that was what my chest x-rays indicated in June of this year. My symptoms began this past April with a swollen right ankle. I saw 4 doctors over the next 2 months who could not determine the cause of the swelling. About a month after the right ankle swelling started, the left ankle began to swell, following quickly by knee swelling, and painful elbow and wrist joints. My legs then began to swell and develop dark bruising in spots. I then starting having a severe dry mouth, following by fever and night sweats. What really frightened me was when I woke up one morning in early June and discovered that the right side of my face was paralyzed. My doctor (who thought it might be Lupus) made a number of urgent calls and arranged for me to see a rheumatologist that afternoon. He ordered a chest x-ray which really confused me as my chest was one of the few areas that did not hurt!! I received a call a couple of days later that the x-ray indicated sarcoidosis. I had never heard of this disease, nor have most people I have talked to since. I had to write the name down so that I would remember it by the time I got home to do some internet research! A few days later I met with an Internal Medicine specialist and the Rheumatologist together, and they ordered CT scans of my brain and chest, a pulmonary function test, bone density test and, as my eyes had now started showing symptoms, referred me to an opthamologist. The chest CT scan stated that it was "consistent with Sarcoidosis". The other tests were normal, although my pulmonary function test showed a very slight decrease in lung capacity. I have not yet seen the opthamologist (my appointment is in early September.) I was put on 15 mg. of Prednisone which within a few days began eliminating my symptoms. All of my joint swelling is gone, my salivary glands are now working again, my facial paralysis is almost completely resolved and I am feeling much better. My Prednisone has been reduced to 10 mg. and the Internal Medicine Specialist has told me to wean off of it by going to 5mg, to 2.5mg and then to 0mg within the next three weeks.

My questions are: From your experience with this disease, is it possible that this was an acute case and that this will be the end of it, or is this extremely naive, wishful thinking?

Also, my specialists have referred me to a thoracic surgeon to have a mediastinoscopy to confirm the diagnosis. Is this a good idea, or should I wait to see if, after I have been off of the Prednisone for a time and do not have recurring symptoms, this has been an acute, one-time episode. Any suggestions? I have been reading this excellent forum for a month or so, and value the opinions and experience of all of you.

Thank you.

Cheryl

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Definitely get the mediastinoscopy done. It will confirm the disease and probably set you at ease on way or another. Sarc canmanifest itself in many ways and at any time so you'll be prepared should other symptoms occur. Good luck

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Thank you for your advice, dog. My specialists had left the decision with me as to whether I wanted to go through with this procedure and, as this whole thing has been so overwhelming and confusing, I just wasn't sure.

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Your face paralysis sounds bell's palsy and with it is the more serious chronic part of sarcoidosis. You need to get any treatment that you can get. The better diagnosis you get the better it will be for you.

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The best way for them to be positive is pathology report of the offending item.

I had the mediastineoscopy done almost 3 weeks? or a month ago. Honestly I was nervous and sore afterwards for a couple days. But it was a more dfinitive answer I recieved than without it I am sure of that.

I just happend to have been dealing with some of my own symptoms for almost 3 years prior..so I get what your going through with some of the confusion.

Loads of information stating that Acute symptoms and course are out there. I would stay on the positive side until reason not to. Alot easier said than lived I admit.

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Thank you all for your help. It is so nice to be able to converse with people who understand what you are going through.

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I think your case does sound much like an acute case. No one can say for sure until it goes away, but the joint swelling, fever, sweating, "bruising" (probably erythema nodosum) and little or no previous symptomology points to an acute case (sometimes known as Lofgren's Syndrome). That is what my doctors thought I had -- but mine now appears to be chronic :( But I did not have the fevers and all-around malaise at first. You must listen to your doctors, of course, but I think weaning off the prednisone and waiting to see if you do well is a good course of action. If you desire to have a definitive diagnosis, the mediastinoscopy is the only thing that will do that, but that's your decision. You'll have a scar about an inch long at the base of your throat from the incision (at least that's how mine is - and I know one other person who had the same procedure and his is the same as mine).

Good luck on whatever you decide. But try as hard as you can to get off the prednisone, which brings with it a whole host of other problems.

Cindy

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Thanks, Cindy. I will have to do some research on Lofgren's Syndrome. My Internal Medicine Specialist indicated that the salivary gland involvement and the facial paralysis were related to Heerfordt's Syndrome. I suppose one could symptoms from one or more "Syndromes" I truly hope that it will be acute but I gather from reading this forum that there are few truly acute cases and that this disease tends to raise its ugly head again.

Another reason that I hesitate to undergo the mediastinoscopy is that I worry about any affect it may have on my vocal chords as I sing professionally. I have read that it can cause hoarseness, but am unsure whether this is temporary or can be permanent. Would this be from the tube they insert down the throat during surgery? I will discuss this with the thoracic surgeon when I meet with him next week.

Thanks again for your reply.

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Good morning Cheryl. Your story sounds so much like my son who was diagnosed at age 12 after suffering with weakness and headaches.
The determining factor that really got the specialist coming out of the woodwork was when he woke up one sunday and the left side of his face was drooping. He had bells palsy which was caused by a sarcoid nodule in his sinus passage, compressing one of his facial nerves He had sinus sugery and biopsies of the nodules (grandulomas) found there that were diagnosed as sarcoidosis. Like you, I said, "What?" "Sar- who?" Had never heard of it and I am a registered nurse.
He went thru all of the specialist that you are seeing. He was determined to have significant lung involvement that required 6 months of high-dose prednisone (60mg daily), plus Methotreate injections weekly (12.5 mg).
After 6 months he was weaned down to 10 mg daily and considered to be in remission. It unfortunately only lasted 8 months and he had to resume therapy again for another 6 months.
This time he stayed in remission for over 2 1/2 years. He is now 17 and though he has intermittent flare ups and must see all of his specialist on a regular basis, he is doing well and not currently taking any meds.
I would advice you to have your Rheumatologist be your primary doctor as far as treatment is concerned. This is the expert in this disease although they work closely with the pulmononlogist, Opthamologist and other specialist. Find a good Rheumatologist that you can trust and stick with them. May God bless you and keep you safe and healthy.
Natalie
(mother of Sarcoidman)

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Thank you for your reply Natalie and your good wishes.

I am glad that your son is doing well. 12 is so young to be thrust into this battle - it must have been very difficult and frightening for you.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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