What follows is an email I composed for the Hereditary Angio Edema (HAE) Digest in response to requests for information, posted here for those who may not be on the Digest’s mailing list (to join the mailing list, which is open to HAE patients and their families, click here).
ANABOLIC STEROIDS AND CINRYZE: PLUS OR VS?
Here’s my take on the anabolic steroids plus or versus Cinryze issue (it’s basically a rewrite of what I wrote my brother when he asked me if Cinryze was a replacement for his stanazol):
This is an issue between your and your doctor. The goal is to have MANY more options for HAE patients, and Cinryze is just another (albeit new) one. For me, Cinryze is currently the ONLY option, as danocrine, stanazol and oxandrine do not work for me. Cinryze is not a replacement unless your doctor determines that it should be. Some reasons that it might be are: (1) pregnancy (a woman should NOT take danocrine during pregnancy because of the effects on the embryo), (2) unacceptable side effects (high cholesterol and diabetes are sometimes side effects of anabolic steroids), and (3) unacceptable number of breakthrough attacks (i.e., anabolic steroid treatment is only minimally effective) (I’m sure the HAE community can think of many others, this is not intended to be a comprehensive list as indicated by the use of the word “some”). Cinryze can be used both prophylactically and for acute treatment, although acute treatment is currently off-label (but FDA approval is being sought).
In light of the HAE-related deaths in the United States last year that could have been provided if Cinryze had been available, it is my considered opinion that EVERY HAE patient in the US should have, at the very least, 2 doses of Cinryze on their premises (if they don’t live alone and there is someone who can be trained to administer it) or at their local fire station/emergency rescue service (if they live alone) for emergency administration in the event of a laryngeal attack.
The answer might be to stay on your anabolic steroid and have Cinryze as an emergency reserve for acute, breakthrough attacks. The answer could be to switch completely, but it may be to do nothing. Each HAE patient’s case varies by frequency, duration and complications and one size has never fit all.
No-swell blessings to all,
DISCLAIMER: The above comments are based on the personal experiences and opinions of the writer, and any errors are unintentional oversights (or possibly just plain ignorance). Readers should always consult their own physician for current and official medical facts, advice and opinions. ALWAYS take everything anyone (including me) tells you with (preferably) two grains of salt (especially if aspirin upsets your stomach as this could result in an abdominal attack [grin!]) and please don’t call me in the morning if you don’t like what I say. Bright blessings for a happy and swell-free day.