As a Black Man With Sarcoidosis, a Dry Cough Reminds Me of My Blessings
Addressing healthcare issues that disproportionately affect Black Americans
Recently, I’ve had a dry cough that just won’t go away.
I know that’s an odd way to start a column, but it’s that annoying. Fortunately, I’m pretty sure the cough is due to the seasons changing here in New York, as my lungs and sinuses often need a few weeks to get used to the shift from hot weather to cold.
I also suspect that an attempt to taper my prednisone levels isn’t working out as well as my medical team and I had hoped.
As I’ve written previously, I’m on the corticosteroid prednisone (arguably the most commonly prescribed medicine for sarcoidosis). My levels are modest compared with others, as my highest dosage was 25 mg a day.
Of course, that’s still a lot of medicine, and studies have found that both short- and long-term use can cause various side effects, some of which are quite troubling. My doctors at the Johns Hopkins Sarcoidosis Clinic have been trying to get my dosages down for years without me experiencing a significant reduction in lung function or quality of life, but we haven’t yet figured out how to do so.
Typically, I have great results when taking 15-25 mg a day, but whenever I try 10 or 12.5 mg, my symptoms worsen a bit. For me, it’s usually not immediate or dramatic, but I often start coughing every minute or so. It’s not a cold, nor is it COVID-19; it’s just how my sarcoidosis presents itself.
Thanks to my great doctors and the years I’ve spent learning more about my own body, I’m not worried about the cough. It’s annoying, but not painful. Every time it arises, my medical team increases my prednisone dosage back to my personal sweet spot of 15-25 mg, and then the cough goes away. This has happened multiple times.
Others face greater challenges
All in all, I’m luckier than many others, especially other Black sarcoidosis patients. This population typically has less access to world-class healthcare providers, fewer resources (such as quality health insurance, which is vital with a rare disease), and little representation in clinical trials. These issues disproportionately affect communities of color.
That is part of why I’m so proud to be a part of the Foundation for Sarcoidosis Research‘s Patient Advisory Committee, as well as the foundation’s new Ignore No More: ACTe Now! campaign, which aims to improve sarcoidosis outcomes in the Black community by increasing awareness and participation in clinical trials. The clinicians, researchers, patients, and advocates involved in the campaign have set the following goals:
- Increase understanding of Black Americans’ attitudes, knowledge, and experience with clinical trials.
- Increase understanding of the barriers Black Americans face in participating in clinical trials.
- Develop recommendations to increase representation of Black Americans with sarcoidosis in clinical trials.
These are lofty goals, but sarcoidosis is a big problem in my community.
I am well aware that I am privileged to have access to world-class healthcare, quality insurance, and the resources to cover the costs of living with a rare disease. As a result, I can live a fairly normal life (or as normal as one can hope for with sarcoidosis). But my experience shouldn’t be unusual.
My hope is that this campaign will greatly increase awareness of sarcoidosis and encourage Black patients to participate in clinical trials. That will ultimately improve our lives and benefit everyone in the sarcoidosis community.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
Brenda Griner
I am “white” but my genetics play a part in my sarcoidosis. Eyes, lungs, lymph nodes, skin. Prednisone has been my only relief and yes, it’s harsh but not nearly as harsh as some of the other treatments and none of them are actually “to treat sarcoid”. I wish people would just be honest and helpful
And treat our symptoms. The breathing, coughing, cramps, pain, and just plain pain and exhaustion. And getting in the sun at all brings on a flare up.
Trayci Tanielle Green
Im curious to know Calvin if you have tried Methotrexate? I started on prednisone but was eventually put on methotrexate.
Jacquelyn J Pinckney-Hackett
Calvin, thanks for sharing! As a Black woman, I use my Facebook account to bring awareness, educate, and support other with Sarcoid. I would love to join the foundation's patient advisory committee. It is my goal to educate as many people as I can in the Black community about Sarcoidosis. I had Sarcoidis for 20 years before I diagnosed myself. I am a big advocate for Sarcoidosis and early diagnosis. There needs to be more research that involves the Black community. I wish there was a celebrity that could help me bring awareness. Secondly, I want you to discuss Remicade with your doctors. I am currently on Remicade because my Sarcoid was not improving on Steroids. I greatly appreciate your sharing.
Andrew Allen
I am white i feel perhaps im in the wrong group if only black americans have it but i do sympathize for them
I had an MI 6 years ago 7 stints a black doctor saved my life within minutes from death but months later PVC's started then they got worse went to 5 hospitals to include emory abd the mayo clinic missed a lot of work but Kimberly Clark cares about its employees so they worked with me anyway by 3 years after the MI i was having v runs and total loss of consciousness so i go to a local EP cardiologist he does a study puts me on Sotolol 120 mg and a pacemaker withICD single lead ( bad idea because the PVC's were left chamber) anyway the pvc's couplets rose to 250,000 per month so he did an cardiac LV RF ablation he stopped the procedure abd had the PA tell me he did one burn but dare not touch my heart abd i needed a better EP Cardiologist well later i had a fake MI the cath showed no ischemia and clear arteries. By now my pvc burden was 450,000 per month i would collapse out of the blue my pacemaker showed ATP-1 which means sustained v run v tach so MUSC in Charleston SC got involved. Dr Jeffery Winterfield and Dr Houston took my case i have cardiac sarcoidosis in my LV 19% survival rate. I have been on long tapers of steroids but i asked my doctor if ny steroids i used in gout attacks from the last 10 years helped he said it may have saved my life as the scars are old but the PET scan shows it 2 ablations later i am better but as you all know it re occurs. I don't care what race the pain for 6 years is very real and nothing works! I pray-for everyone who is affected EVERYONE!