I have had ss since 2014. I have had various symptoms and treatment. I am now anemic and should have blood tests every 2wks,however, it's not possible for good reason. I have had my first bad flare up in over 2yrs, recently and have linked a hoarseness to my voice each time. Is this usual? Do any other sweeties get this too?
Interested x
Hi CGWestview 2018,
It's unlikely that the hoarseness is being caused by SS.
Have you been checked for hypothyroidism (underactive thyroid)? This condition can cause hoarseness and anaemia, and SS has been associated with thyroid conditions.
Oesophageal reflux (GORD/GERD) can cause hoarseness, and develop as a result of certain medications such as prednisone and NSAID's (non-steroidal anti-inflammatory drugs), e.g. ibuprofen.
Michelle.
Thanks for that. I have been for a check today. They have doubled my dapsone and folic acid as I am very anemic. They are now testing my folate and further bloods. Could it be as simple as B12 deficiency? I'm desperate for a cure or answers 🤔
Hi CG, unfortunately, hoarseness and anaemia can be caused by all sorts of things.
Dapsone can cause anaemia, but not hoarseness. DermNet NZ - "Anaemia (low haemoglobin or blood count) is common in patients receiving dapsone; it is usually mild. Possible symptoms of anaemia include tiredness and shortness of breath. More severe anaemia is likely in patients with glucose-6-phosphate dehydrogenase deficiency." dermnetnz.org/topics/dapsone/
In approx. 20% of cases, SS can develop secondary to cancer, one of the commonest being myelodysplastic syndromes (MDS). MDS can cause anaemia, but as you were diagnosed with SS 7 years ago, it's less likely to be this. Hoarseness is not a symptom of MDS.
