Living With Acromegaly



Acknowledgment: This story is sponsored by Chiasma, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.

 Living with Acromegaly – Not Letting your Treatment Control You

 Some people living with acromegaly can often go years without a diagnosis or remain puzzled by a constellation of symptoms that seem unrelated.¹ In other people, the brain tumor that causes acromegaly is detected early while it is still small.²

But even after receiving a proper diagnosis, living with and managing acromegaly is often a difficult, twisted and painful road. But now, after years with no significant medical advancements for people with acromegaly, they can work with their provider to choose a less painful, more convenient treatment option.

 Meet Haley

“I lived comfortably in my own perfect bubble and was not at all prepared for the inconveniences that acromegaly would bring into my life.”

Haley was a typical energetic and athletic high school senior who was eager to graduate and head off to college. However, just weeks before her graduation, she found herself at the pediatrician for a drooping eyelid. She was diagnosed with a sinus infection. Just to be safe, Haley’s doctor sent her for a CT scan that revealed a mass on her brain, leading to the first of many MRIs.

 Haley’s doctor informed her that she had a tumor the size of a child’s fist in her brain, which could only be partially removed because it was so close to her optic nerve. Following her surgery, she was officially diagnosed with acromegaly, which would require ongoing treatment.

“I wrestled daily with wanting to shout from the rooftops about acromegaly – to explain why I looked and acted like I did – and wanting to isolate myself in my room, shutting the whole world out.”

Haley did her best to keep college life separate from her acromegaly life, but quickly learned how difficult that would be. She chose to travel four hours home to receive her monthly SSA injections from her family nurse. She had to deal with what she dubbed “shot weekends” each month to recover from the injection-related side effects. Monthly injections, and the associated weekends out of town, were soon combined with daily self-administered injections as well. The inconvenience of planning out when to give the injections was proven to be a difficult interruption.

 Haley continues to view acromegaly as a learning experience and stays committed to finding the right treatment for her. Like many patients in the acromegaly community, she is excited about a recent advancement in acromegaly treatment options such as an FDA-approved oral SSA treatment for appropriate patients.

Meet Jim

Acromegaly is an isolating disease. One of the things I wish I’d had earlier was a guide for what to expect.”

Jim, who has lived with acromegaly for over 20 years, learned about a clinical trial for MYCAPSSA and decided to join the study about three years ago.

Growing up, Jim was an athlete and was, especially, an avid golfer. As an adult, he noticed his shoe size and glove size were increasing abnormally. Often, he also felt fatigued, but he simply attributed it to working long hours. Jim finally knew something was severely wrong when he lost feeling in his hands toward the end of a golfing trip with his father.

With his father’s assistance, Jim visited an internist who diagnosed him with a brain tumor. Jim would later receive brain surgery. Little did Jim know that this was only the beginning to his long journey with acromegaly.


“After the surgery, I continued to struggle with fatigue and joint pain, especially in my hands, feet, and hips. I had trouble sleeping. I had regular appointments and blood tests for the next seven years.”

Although Jim was finally able to manage acromegaly with an injectable treatment at home, he still dealt with the pain and inconvenience associated the injections. With his doctor’s recommendation, Jim entered a clinical trial for MYCAPSSA® (octreotide) delayed-release oral capsules. He learned about the possible side effects, which include headache, joint pain, nausea, weakness, diarrhea, and sweating a lot.

“I’m very grateful my doctor introduced this opportunity to me because I found taking oral medicine to be more convenient for me. Twice daily MYCAPSSA has allowed me to manage my acromegaly more comfortably without the pain, bruising, swelling, and stress of monthly injections.”

When Jim started taking MYCAPSSA twice daily, he thought this could give him consistent hormonal control.

“I wanted to have a less painful, consistent ride and MYCAPSSA has exceeded my expectations in that regard.”

With MYCAPSSA, people living with acromegaly can finally have an oral treatment option that provides hormonal control and alleviates some of the burdens of treatment with SSA injections.

For more information on MYCAPSSA, visit:


What is MYCAPSSA (octreotide) for?

MYCAPSSA is an oral prescription medicine used in the long-term maintenance treatment of acromegaly in people for whom initial treatment with octreotide or lanreotide has been effective and tolerated.

If these treatments are effective and your body is tolerating it, you may be eligible to take MYCAPSSA instead of the injections. Ask your doctor if this oral treatment is appropriate for you.

What is the most important safety information I should know?

MYCAPSSA can cause problems with the gallbladder. Tell your healthcare provider if you have any of these symptoms: sudden pain in your upper right stomach (abdomen) or right shoulder or between your shoulder blades; yellowing of your skin or the whites of your eyes; fever with chills; or nausea.

MYCAPSSA may affect your blood sugar, thyroid hormone, or vitamin B12 levels. Tell your healthcare provider if you have any problems or conditions related to these. Your healthcare provider may monitor these levels during your treatment with MYCAPSSA.

Tell your healthcare provider if you have an irregular heartbeat.

Who should not use MYCAPSSA?

MYCAPSSA can cause a serious allergic reaction including anaphylactic shock. Stop taking MYCAPSSA right away and get emergency help if you have any of these symptoms: swelling of your tongue, throat, lips, eyes or face; trouble swallowing or breathing; severe itching of the skin with rash or raised bumps; feeling faint; chest pain; or rapid heartbeat.

Do not use MYCAPSSA if you are allergic to octreotide or any other ingredients in MYCAPSSA. If you need to know the ingredients, ask your healthcare provider or pharmacist.

If you have certain other medical conditions, you should use MYCAPSSA with caution. Tell your healthcare provider about all your medical conditions, especially the following: pregnancy or breastfeeding; liver disease; kidney disease; or difficulty in emptying bladder completely.

Tell your healthcare provider about all the medicines you take. MYCAPSSA may affect the way other medicines work, and other medicines may affect how MYCAPSSA works.

What are the possible side effects of MYCAPSSA?

The most common side effects are headache, joint pain, nausea, weakness, diarrhea, and sweating a lot.

Talk to your healthcare provider if you have any side effect that bothers you or that does not go away. You may report side effects to the FDA at 1-800-FDA-1088.

Keep MYCAPSSA and all medicines out of the reach of children.

How should I take MYCAPSSA?

Do not take MYCAPSSA with food. MYCAPSSA should be taken with a glass of water on an empty stomach. Take MYCAPSSA at least 1 hour before a meal or at least 2 hours after a meal (for example, you could take your morning dose 1 hour before breakfast and your evening dose at bedtime).

©2020 Chiasma, Inc. All rights reserved. MYCAPSSA and Chiasma are registered trademarks of Chiasma Inc. PM-MC-US-0195 09/2020

¹ Mayo Clinic – Acromegaly. Accessed September 9, 2020.

² AlDallal S. (2018). Acromegaly: a challenging condition to diagnose. International journal of general medicine, 11, 337–343.

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