Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Some of you are already aware but here is the link to our petition to get the oral octreotide decision reversed. This is all online. Remember one person can make a difference but a community can move mountains. Get this spread as far as possible. Let's show the FDA what power our community has.
http://www.thepetitionsite.com/946/566/206/acromegalic-patients-need-oral-medication-option-for-improved-quality-of-life/?taf_id=25146162&cid=email_na#
petition: Acromegalic patients need oral medication option for improved quality of life
www.thepetitionsite.com
overview:
Currently the only medical alternative to this chronic, systemic disease is injectable medication that is administered by health care providers (i.e. not self administered). Untreated, this disease is terminal. This tumor on the master gland is often inoperable, and frequently even with surgery patients require on-going painful injections. These injections require patients to go to their provider (oftentimes, a long distance), run the risk of the large needle and gauge getting clogged with the thick medication. The medication requires refrigeration, specific unique preparation and room temperature a half hour before injections. They are usually painful, inconvenient (tethered to the clinic, transportation, confirmation that it was ordered and delivered in time, a skilled and trained care giver, additional needles in the event of needing to re-stick, etc.). Additionally, these injections do not prevent "break through" symptoms.
The oral formulation is of the same medication that has been approved and shown to be effective in stabilizing patients- albeit with a new manner (TPE) of taking the medication using oral capsules twice a day (on an empty stomach). The third trial of this medication proved that it is a safe and effective alternative to injections. MyCappsa would improve the quality of lives, as the 86% of subjects volunteered to continue using the medication (i.e. despite the rigors of participating in the study).
Please show your support by adding your signature on this petition.
http://www.thepetitionsite.com/946/566/206/acromegalic-patients-need-oral-medication-option-for-improved-quality-of-life/?taf_id=25146162&cid=email_na#
petition: Acromegalic patients need oral medication option for improved quality of life
www.thepetitionsite.com
overview:
Currently the only medical alternative to this chronic, systemic disease is injectable medication that is administered by health care providers (i.e. not self administered). Untreated, this disease is terminal. This tumor on the master gland is often inoperable, and frequently even with surgery patients require on-going painful injections. These injections require patients to go to their provider (oftentimes, a long distance), run the risk of the large needle and gauge getting clogged with the thick medication. The medication requires refrigeration, specific unique preparation and room temperature a half hour before injections. They are usually painful, inconvenient (tethered to the clinic, transportation, confirmation that it was ordered and delivered in time, a skilled and trained care giver, additional needles in the event of needing to re-stick, etc.). Additionally, these injections do not prevent "break through" symptoms.
The oral formulation is of the same medication that has been approved and shown to be effective in stabilizing patients- albeit with a new manner (TPE) of taking the medication using oral capsules twice a day (on an empty stomach). The third trial of this medication proved that it is a safe and effective alternative to injections. MyCappsa would improve the quality of lives, as the 86% of subjects volunteered to continue using the medication (i.e. despite the rigors of participating in the study).
Please show your support by adding your signature on this petition.
I have been on sando injections since 2000 currently on 40mg x 28days
I was somewhat suprised to read the problems that people are having with this injection as i have not experienced this myself and was wondering what is been done differently or have i just got a damn good nurse administering it. lol
the last week of my shot, I can feel it wearing off though and have an increased level of fatigue and muscle/joint pain.....
Terminal Condition Definition:
An incurable and irreversible condition caused by injury, disease, or illness that would cause death within a reasonable period of time in accordance with accepted medical standards, and where the application of life-sustaining treatment would serve only to prolong the process of dying.
Acromegaly, untreated, does not lead to death within a reasonable period of time in accordance with accepted medical standards. The available treatment does not prolong the process of dying, but rather brings back people to a normal life expectancy.
I don't wish to be controversial or antagonistic, but rather to make the campaign stronger.
The statement could be changed to: "Untreated, it leads to chronic loss of quality of life, irreversible physical deformities, cardiovascular complications, higher incidence of malignancies and early mortality"
(or something like that)
All the best,
Trys
www.acromegaly.wordpress.com
New to group. 2 questions:
1) I assume the petition is for USA residents only?
2) What was the basis of the FDA decision? Presumably a lack of efficacy or an expected lack of compliance with dosing needs. Having an empty stomach twice daily for dose will be a difficult real world compliance issue. Availability of drugs via different dosing routes is fraught with issues.
3) I'd agree with Trys as well.
cheers
John