Still not feeling well? You are not alone!
The new, and validated survey instrument on quality of life for patients being treated for acromegaly, developed by Dr. Maria Fleseriu and her colleagues at NW Pituitary Center Medicine at the Oregon Health & Science University in Portland, revealed that those patients who continue to need treatment for acromegaly, still do not feel well. The survey is short – just 29 questions, and was validated by follow up interviews post-survey.
The results were indeed discouraging for those living with acromegaly and being treated with an injectable form of Somatostatin.
Ninety-five percent of patients had injection site reactions. Having just spent two days in a room full of people dealing with acromegaly, I heard this a lot – only second to distress about the difficulty in getting diagnosed- which might be 100%. Acromegaly is missed – a lot, even when the “right “ labs are done and are flagged
Prior to diagnoses, many individuals feel that they have been “branded” as” complainers”, by their HCP’s.
Many individuals have been told that their pain is their own fault “if you lost some of that weight your joints would not hurt.”
But post-diagnoses and on treatment, many people would “deal” with the pain of injections if they felt well! Yes, the sample size was small- but I personally believe these statistics would hold true in a larger poll. If you speak with nurses who work with acromegaly patients and clinic personnel – they would tell you that their patients are improved, but not well. Eighty-four percent were taking their injections regularly and still had break-through symptoms. The worst and most persistent: Fatigue, headaches, joint pain, and excessive sweating!