Experiences with Sarcoidosis?
 

Does anyone out there have any experiences with sarcoidosis? Especially experiences with sarcoidosis related to bone marrow failure?

The reason I ask... I had a bout of acute Sarcoidosis back in 1996. It started in the early Spring of 1996 and was mostly gone by the end of the year. It was treated mainly with low dosage of prednisone. Sarcoidosis usually attacks the lungs, but it can attack practically any system in the body.

It initially started VERY SUDDENLY in my ankles and feet -- overnight my feet/ankles were swollen so big I couldn't get into my shoes for a week or so. I also initially had a mild unproductive cough and a fever of about 102. The feet/ankle swelling went away quickly with an initial dose of steroids. The sarcoidosis progressed into a more severe cough and ongoing fever, which persisted over several months, along with general joint aches and pains. I remember at times coughing my head off, and having a fever of around 100 degrees F that would occur just about every day for several months -- and just generally feeling "crummy." Finally it all just went away with no lingering effects. At least I think it did...

Just a few years later (Spring of 2000), I was found to have pancytopenia while undergoing some routine blood tests. The hematologists have considered the sarcoidosis to be a possible underlying cause of my blood problems, but they have no real evidence to make that conclusion. Sarcoidosis is kind of hard to diagnose. It seems sort of like you rule out every other possible thing, and then you are left with the diagnosis of sarcoidosis. Actually they did do a bronchoscopy on me back in 1996, but there was no evidence (even then) of sarcoidosis -- specifically no granulomas found.

Anyway, I was just wondering if anyone else out there had experience with (or knew of) sacoidosis related to bone marrow failure?

The topic has never come up in these forums before.

Dr. Phillip Scheinberg from the NIH mentioned sarcoidosis in a presentation at an AA&MDSIF patient conference. He listed it as a possible secondary condition in a slide about diagnosing reasons for pancytopenia. See the first slide on page 7 of this presentation.

Since both marrow failure and sarcoidosis involve the immune system you could imagine them being related, but without knowing the causes of sarcoidosis it's hard to imagine we can explain a connection. However, a connection might be found statistically, without indicating cause and effect. It could be that some underlying cause, or genetic predisposition to a condition, can results in either sarcoidosis or pancytopenia.

I doubt that bone marrow issues would result from treatment for sarcoidosis, which is more about protecting you from symptoms than about trying to cure the condition.

But I'm just a layperson speculating. It would be nice to ask a medical professional like Dr. Scheinberg about a possible connection.

David, you may want to call NIH to enroll the clinical trial for moderate aplastic anemia with Eltrombopag. They had excellent result from refractory AA folks and are recruiting patients with MAA now.


http://clinicaltrials.gov/show/NCT01328587

Clinical Trial...
 

Thank you, I will certainly look into that!

I don't know much about the clinical trials. I haven't really thought about them that much, but it looks very interesting.