Acromegaly symptoms are not always well controlled

About Acromegaly Treatments

Treatment by the Numbers

After years of slow progress in acromegaly treatments, there are several potential treatment options in clinical development. Data from multiple recent studies that examined outcomes reported by people living with acromegaly, tell us why that’s so important:


Acromegaly Clinical Studies

Here are the recently completed and ongoing phase 2 and phase 3 clinical studies for acromegaly. Study progress is represented as of March 2021, based on data available on clinicaltrials.gov.

Clinical Studies Sponsor Phase 2 Phase 3
CHIASMA OPTIMAL
NCT03252353

MPOWERED
NCT02685709
Chiasma, Inc.  




NCT04125836

NCT04076462
Camurus AB  




ACROBAT EVOLVE
NCT03792555

ACROBAT EDGE
NCT03789656

ACROBAT ADVANCE*
NCT04261712
Crinetics 
Pharmaceuticals Inc.
 




NCT03548415

NCT03967249

NCT04522180
Ionis
Pharmaceuticals, Inc.
 
*Open label extension study of patients who participated in ACROBAT EVOLVE or ACROBAT EDGE or patients with uncontrolled acromegaly who are not currently treated with acromegaly medications.

Ongoing Symptoms

It is common for people with acromegaly to experience symptoms despite receiving treatment or having normal IGF-I and GH levels. Since it is not known to what extent patients’ healthcare providers are aware of the frequency and severity of acromegaly symptoms, or level of treatment satisfaction, it is important to speak up and share your experience managing acromegaly.¹ Explore this helpful resource to track your monthly symptoms and assist your discussion with your doctor at your next appointment. Remember, no question is too big or too small.

AcroExperience Discussion Guide

Painful Injections

While the symptoms of acromegaly can be painful to live with, injectable treatments for acromegaly can be painful as well.1

  • 90% of patients treating with injections experienced pain at their injection site during their injections
  • 72% said they had pain hours after their injection, and 53% reported pain days after the injection
  • Other symptoms like nodules, swelling, and bruising were common

People living with acromegaly deserve more from their treatment, and thankfully there are several novel potential treatments in the clinical development pipeline. Take action and talk to your doctor about potential acromegaly treatment options in clinical development.

Wear-Off Effect

In some cases, the positive effects of somatostatin analog (SSA) treatment may start to fade toward the end of the treatment cycle, which may lead to the onset or worsening of acromegaly-related symptoms, also known as “wear-off effect.”4 According to a recent survey, 52% of people living with acromegaly experience worsening symptoms over the course of their treatment cycle.2 Common symptoms include:

Breakthrough Symptoms

People living with acromegaly may also experience symptoms despite receiving treatment with a somatostatin analogue (SSA) and/or having IGF-I and GH levels in a normal range. These are known as “breakthrough symptoms,” often characterized by:5

  • Fatigue
  • Body Aches
  • Joint Pain
  • Sweating
  • Headaches

It’s not surprising, then, that a recent survey showed that nearly half of people living with acromegaly are not satisfied with their treatment.3 Talk to your doctor about potential acromegaly treatment options in clinical development.

Acro-rage & Acro-fog

Biological changes in the body, caused by the tumor on the pituitary gland or by medication, may also result in hormone-induced mood swings (labeled Acro-rage by the patient community).5

Acro-fog, or cognitive impairment in the form of general forgetfulness or short-term memory loss, is also reported widely by patients. In fact, a recent study showed 81% of acromegaly patients reported experiencing Acro-fog.¹

Prepare for your next visit

This downloadable AcroSymptoms Tracker makes it easy to record symptoms on a weekly basis and discuss your real experiences with your doctor. This is especially important for people with acromegaly who may experience symptoms even when their IGF-I and GH levels are within a normal range.

Simply download the PDF, print it out and begin tracking the symptoms you experience. At your next appointment, bring the completed tracker to have an open discussion with your doctor or nurse. Ask what can be done, now and in the future, to improve the way you can manage your acromegaly.

AcroSymptoms Tracker

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Thank You

1. Geer EB, Sisco J, et al. Observed discordance between outcomes reported by acromegaly patients and their treating endocrinology medical provider. Pituitary. 2019 December 5. (doi:10.1007/s11102-019-01013-2) 2. Strasburger CJ, Karavitaki, N, et al. Patient-reported outcomes of parenteral somatostatin analogue injections in 195 patients with acromegaly. European Journal of Endocrinology, 2016. (doi:10.1530/EJE-15-1042) 3. Liu S, Adelman DT, et al. Patient-centered assessment on disease burden, quality of life, and treatment satisfaction associated with acromegaly. Journal of Investigative Medicine. 2017. (doi:10.1136/jim-2017-000570) 4. Biermasz N. New medical therapies on the horizon: oral octreotide. Pituitary. 2017. (doi:10.1007/s11102-016-0785-3) 5. Fleseriu M, Fogelfeld L, et al. Development of a novel patient-reported measure for acromegaly: the Acro-TSQ. Pituitary. 2019. (doi:10.1007/s11102-019-00986-4)