Sarcoidosis

[Naive]

I’ve been diagnosed with MDS by BMB. I’m currently stable with almost normal blood numbers. The only consistently very low line is lymphocytes. Mildly anaemic (was transfusion dependant until the last few months) mildly Leukopenic (used to be severe on GCSF).

I had a skin biopsy done on what the GP thought was a skin cancer but the results have come back today as Sarcoidosis. I’m now being scheduled for a whole heap of other blood tests, scans, ECG, eye exam, etc.

Obviously I’ve Googled Sarcoidosis and it’s signs, symptoms, prognosis etc. I see where it’s thought to be a T lymphocyte immune mediated disease.

I was wondering if anyone on this forum has been tested for or received a diagnosis of sarcoidosis too. Also if there’s any established link between auto immune diseases and MDS. Now I’m questioning my MDS diagnosis. SLE is common in my extended family.

I guess it’s a waiting game again until all the new test results are back.

[David M]

Back in 1996, I had a strange bout with something for about 6 months that the various doctors finally concluded was sarcoidosis. Initially, it manifested itself with both my ankles becoming swollen and red (I mean, really swollen!). At the same time, I had a fever of around 100-101F, achiness all over, and I started coughing some (just an occasional cough at first).

Not knowing exactly what to do, my GP doctor gave me a course of steroids -- and the ankle swelling responded quickly to this. Just after this, a Rheumatologist examined me, took some blood, and noticed my cough. He quickly diagnosed me with sarcoidosis. The lung involvement increased over the coming months. I just remember coughing until I felt I was going to faint. I was sent to a pulmonologist, and he tested me for various things, including doing a bronchoscopy. I remember having a 100F fever for weeks on end... and feeling pretty "crummy."

Finally, after about 6 months, the cough and fever went away. The doctors said it was an "acute" case of sarcoidosis. Not sure why it happened, but it did.

A few years later (around June 2000), we first noticed that my blood counts were low enough to be concerned... and that is when my experience with pancytopenia began. (You can read my story and subsequent updates in My Story forum on this website.)

Was the sarcoidosis related to my pancytopenia? Do I still have some form of sarcoidosis? Is the sarcoidosis somehow CAUSING my pancytopenia? I don't know. For me, the doctors rarely consider or mention my bout with sarcoidosis, so I'd say they do not consider it a serious threat in my case -- and I'm not sure what they would do different if they did suspect sarcoidosis to be causing my blood problems.

Well, enough about me... I hope and pray that they can help you as you deal with your health challenges!

[Sally C]

Hi Naive and David,
I am a cause and effect kind of gal and am always trying to find connections with different ailments.
I did a quick search on what David talked about and there are accounts on the internet that connect sarcoidosis and pancytopenia. I didn't look for all blood counts but there may be a connection. Because of the claims of Agent Orange from Viet Nam now causing MDS I don't know that causes can be ruled out just because of time passed.
What I have found over the years is that doctors aren't able to research our individual situations so we have to do it ourselves. I have enlightened more than one doctor with my research.
As far as auto-immune situations, there can be auto-immune components to these marrow problems so I would think it could manifest itself elsewhere but I'm no doctor - I just pretend to be.
All the best to you both,
Sally

[Naive]

Thank you for your replies.

I’ve had my Abdominal ultrasound, they found two lesions on my spleen. Now I’m really questioning my MDS diagnosis.

[Meredith S.]

Hi Naive, and others:
I want to chime in here as my husband shares some similarities with you and others on this thread. He was diagnosed with MDS in Jan. 2018. He has low platelets (around 50,000) and has become severely neutropenic with WBCs 1.1 and neutrophils 0.1, somewhat steady in the last 6 months although 2 wks ago his WBCs went to 0.7. Lymphocytes are 0.6. His RBCs are normal. He has been so fortunate to have not had any fevers or infections. He is active around the house, though more fatigued that his usual, and has lost 20 lbs. this year. He is a Vietnam veteran.
Two weeks ago he had a finger turn purplish and then over a week's time, so did the rest on that hand. He was diagnosed with Raynaud's. The fingers hurt when touched and I am concerned that it is vasculitis or something else. I did find some research stating that Raynaud's can be an "immunological manifestation" of MDS.

He also had a CT scan and PET at diagnosis time and was found to have focal lymphadenopathy...big retroperitoneal lymph nodes. We don't know why. A biopsy was benign.

He had a repeat CT last week and we'll get the results next wk when he sees his hematologist.

As his wife, I have found the whole scenario frustrating as it seems we have few good answers, but we are also grateful that the course has not been too rough thus far.

Best to all.

Meredith S.

[Naive]

It’s been a long time but I thought I’d update on what’s going on. I had further tests and was found to have pathologically enlarged lymph nodes in 6 zones in my chest. I proceeded to biopsy which confirmed Sarcoidosis (there was some discussion, it may have been lymphoma).

I have sarcoidosis in my chest, skin, spleen and possibly heart and kidneys. The sarcoidosis specialist said that a lot of people with sarcoidosis have it in their bone marrow but unless it’s affecting their blood counts it’s not tested for and not treated.

I’m not on any treatment for the sarcoidosis but it’s considered a chronic form.

My blood counts have still been fairly stable although my chronic neutropenia (at least 16 years) has suddenly improved and they are now on the higher end of normal, and I’ve lately required more blood transfusions. I was averaging a blood transfusion every 4-6 months but now I’m requiring them 4-6 weeks. Lymphocytes are still low at usually around 0.3-0.4