Expert: Heather Guidone
Hi Heather,I have stage 4 Endo. I was diagnosed over 10 years ago. My future goal is to have another surgery but without health insurance, that is not foreseen anytime soon. I had the worst pain I have ever had yesterday. For five hours straight I was in so much pain that I was crying, screaming, contstantly throwing up. It was horrible. It was so bad that my husband begged me to go to the ER. Pain meds did not help at all. When I was first diagnosed with Endo I had laser ablation and was offered Lupron. My insurance would not cover Lurpon so I was paying out of pocket. After 2 months I just couldn't afford it anymore. After yesterday, my husband and I are considering going through Lupron treatment again. Well, it's a new husband then before so he doesn't know what it was like. I never had all the symptoms because I was not on it long enough before. Can you tell me what the side effects are? Well, more like the long lasting side effects? What won't go awway after taking ending the treatment?
Thanks for any advice you can give me.Karen
Hi Karen! Thanks for writing.
I'm sorry for what you've been going through.
This is not an easy (or financially simple to treat) disease, for certain.
I'm going to tell you the same thing that I tell other patients who are considering Lupron. Ultimately, it's your choice, of course, but it helps to make an educated decision - something that is very hard when most doctors are either uninformed or outright dishonest about the effects of GnRH therapy and the company has one of the biggest, most successful marketing campaigns in the world.
It's easy to find positive stories and info about Lupron "out there;" it's not so easy to get to the heart of the accurate facts and first person experiences.
Anyone can read http://www.endoknow.com for "fluff" about the drug. For the other side of the story, I offer this info to anyone who asks:
Perhaps you will be one of the lucky ones in whom Lupron is effective and confers minimally negative, short-lived side effects.
Lupron is merely a temporary, stop-gap measure only which often affects women in a highly negative manner (with long-lasting side effects) and doesn't even temporarily remove the symptoms. There is a reason that the Endo treatment centers do not use or prescribe Lupron in their practices (see http://www.endoexcision.com, http://www.centerforendo.com, http://www.endometriosissurgeon.com).
You may want to contact one of the specialty centers to discuss payment plans, discounts and other options for excision surgery.
For even more explicit details on the drug and its effects and shortcomings, you will definitely want to read http://www.endocenter.org/pdf/surgery%20vs.%20gnrh.pdf
Potential side effects of Lupron are extremely negative and long-lasting, and include (as reported by the manufacturer itself, not just those who hate the drug):
Asthenia, General pain, Headache, Hot flashes/sweats, Nausea/vomiting, GI disturbances, Edema, Weight gain/loss, Acne, Hirsutism, Joint disorder, Myalgia, Decreased libido, Depression/emotional lability, Dizziness, Nervousness, Neuromuscular disorders, Paresthesias, Skin reactions at injection site, Breast changes/tenderness/pain, Vaginitis, Flu-like symptoms, Heart palpitations, Syncope, Tachycardia, Appetite changes, Dry mouth, Thirst, Ecchymosis, Lymphadenopathy, Anxiety, Insomnia/Sleep disorders, Delusions, Memory disorder, Personality disorders, Rhinitis, Alopecia, Hair disorder, Nail disorder, Conjunctivitis, Ophthalmologic disorders, Taste perversion, and Dysuria. And that's just a few.
Check the prescribing literature or check a PDR for the long list.As an aside, there have also been several lawsuits against TAP, including the largest one in federal history - ever - against a pharmaceutical company - $875 million, prosecuted under the RICO statutes (racketeer influenced criminal organization) for the kickbacks they gave prescribers to give the med to their patients. Unfortunately, while that lawsuit was huge and brought justice, it did not bring justice to those who are suffering the horrific long-term side effects, because the suits were about pricing, not side effects.You may want to check out the following sites to read up on and talk to thousands of others who are in your shoes and can offer insight and advice:
There are very few pros associated with Lupron. The key to successful treatment of Endometriosis is removal of disease - true removal (i.e., excision, not superficial ablation, vaporization, etc. and not ovarian suppression). There is no guarantee you will be pain free for 6 minutes, let alone 6 months with Lupron, but the excision stats speak for themselves (only a 20% recurrence rate over the course of 20 yrs. in thousands of patients).
In any event, should you decide Lupron is right for you and you wish to pursue it, this might help with some of the expense:
Lupron Patient Assistance Program call 1-800-621-1020, option 7
This can help you get low or no cost Lupron.
I do wish you luck and hope that whatever you decide is the right answer for you. Entering into an educated treatment option is never wrong; just make sure you've asked all the questions and been satisified with the answers.
Good luck no matter what you decide.
Thank you Heather! From the ERC