Sunday, September 15, 2013

Sandostatin LAR Side Effects

I definitely don't think there's a complete list of side effects for Sandostatin LAR. I've had a lot of weird symptoms that I believe may be side effects since being on Sandostatin LAR for over 6 years, since May of 2007. Here is a list of my symptoms that I think may be additional side effects. I'm not sure if it's due to taking a higher dose of Sandostatin LAR (I'm on 40mg every 3 weeks).

Extremely dry flaky skin (especially on upper arms, torso, and head)
Hair loss (I lose a lot of hair when brushing, and have a patch of "hair cleavage" on the back of my head)
Heart palpitations (especially after drinking too much soda)
Metal sensitivity (skin rash from necklaces or rings)
Sun sensitivity (skin rash, easier to sunburn)
Muscle sensitivity (Fatigued by high winds and cold temperatures. Repetitive or continuous activities like exercising too hard, holding a book while reading, or holding a steering wheel while driving for long periods can cause fatigue, muscle tightness, jumpy/snapping sensation in muscles, and neck aches/headaches)
Flushing (neck, chest and face rash when I get too warm, or anxious) Animal Allergies? (runny nose, itchy eyes when exposed to cats or dogs, or to dander on someone's clothing)

Side Effect List from Novartis' Web Site:


Warnings and Precautions: Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.

Before taking Sandostatin LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.

Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include:

Acromegaly: diarrhea, gallstones, abdominal pain, and flatulence
Carcinoid tumors: back pain, fatigue, headache, abdominal pain, nausea, and dizziness

Other information: Patients with carcinoid tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms. Patients with acromegaly should adhere to their return visit schedule to help assure steady control of GH and IGF-1 levels.

Wednesday, September 11, 2013

Yes I'm Still Alive - Feel Free To Email Me

Hey everyone. I just wanted to say yes, I'm still alive :-) I received an email from a fellow Acro wondering why I was neglecting to post. I'm including some of my response here. I'm sorry I don't blog as often. Part of the reason I was so active online in years prior is because I was still figuring things out, and still coming to terms with the disease. There were also much fewer online resources for Acromegalics. Now we have so many that I wonder how rare the disease really is. So yes, usually if I don't blog it's because things are going well. It's still rough but mostly I do ok, and my treatment is pretty straightforward. Since changing to an endocrinologist closer to home, my stress level has gone down (I think I have whitecoat anxiety on top of everything else!), and I only visit him once a year. My labs are once a year, and MRI's once every 3 years since there's been no change in so long.

I also try not to dwell on the Acro because I'm one of those people who will worry it to death, and be online Googling everything for 12 hours straight, or till I fall off my computer chair passed out :-) I think I've already done enough worrying with 7 years since surgery alone! And truly part of my neglect is frustration with this disease, because there are so many unknowns. It's sad when I think I'm more knowledgeable than my doctors sometimes. I also don't want to post as often and feel like a big whiny baby :-)

That said, I always like to be there to help out if there's someone with Acro who needs to compare notes, just needs to talk, or to meet in person. I've met in person Ellen from Acromegaly Bloggers, Wayne Brown from Acromegaly Community, and was lucky to meet Tanya Angus before she passed. I think that meeting my fellow Acro's in person did help in my search for information, validation, and my healing process. There are a few people with Acro that I still speak with via email. Please feel free to contact me. I'll likely respond to email much quicker than I will to write a blog post.