My Experience Trying Lupron to Treat AHP Attacks

Claire Richmond avatar

by Claire Richmond |

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My rich and complex history with hormones started at age 15, when I turned to various estrogen and progestin combos to control painful periods. I was experiencing acute hepatic porphyria (AHP) symptoms brought on by my monthly cycle, but it took years to get to the real source of the problem. I also had to scrap birth control options, many of which are listed as “unsafe” for people with acute porphyria on the American Porphyria Foundation’s Drug Safety Database, but that’s another story.

I still have painful periods. I can time AHP attacks by my monthly cycle. I experience as many as two flares per month, starting around ovulation and again on the days leading up to my cycle. Hormone fluctuations are a common trigger in women my age with AHP, and some will have multiple attacks each year around their cycle. Frequently prescribed to prevent these flares is Lupron (leuprolide), a medication that will induce a state of menopause in women.

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Lupron prevents ovulation and suppresses the secretion of estrogen and progesterone. It’s been used to safely treat women with cyclical AHP attacks for more than 30 years. Low doses of estradiol are recommended to decrease menopausal symptoms. A calcium supplement can prevent osteoporosis.

I receive more questions from recently diagnosed women about this drug than Panhematin (hemin for injection) or Givlaari (givosiran), both approved by the U.S. Food and Drug Administration to treat porphyria. They’ll direct message me to share a familiar story of diagnosis trouble or attacks with their menstrual cycles. They want to know if Lupron is worth trying. I give them compassion, but I don’t give medical advice.

When it comes to Lupron, I’m hesitant to share my story. I tried Lupron for eight months, and it wasn’t for me. I chose to discontinue treatment for two big reasons: My attacks weren’t solely triggered by hormones, and I was concerned about bone loss over time.

Lupron is an injection that can last for as little as one month and as long as six. The first shot I received sent me into an attack, and I learned that timing my cycle with the initial dose was important. I consulted with a porphyria expert on this before continuing with subsequent doses.

Just as menopause is harder on some women than others, the effects of Lupron may have provoked more side effects in me than it would in another AHP patient. During this time, I developed deep empathy for women going through this change.

I quickly learned why hot flashes are such a big deal. One minute, I’m chilly in my office, and the next, I’m in a meeting, turning red and sweating through my blouse. Then there’s the sleep disturbances, the decline of sexual interest, and the weight gain. Of all the above, weight gain seems to be the most feared side effect.

I was at my highest weight while on Lupron. Regardless of what or how I ate, an extra 10 pounds accumulated on my frame. I never got used to my body’s new “enhancement,” but I would have been accepting if I were getting good relief from the drug.

If stabilizing my estrogen and progesterone was all it took to nix my attacks, I would have considered a long-term treatment plan on Lupron. Unfortunately, stress and diet trigger attacks, both of which are easier to stay on top of now that I’m no longer working full time. Giving my body the space for its unpredictable needs, like rest and infusions, was a kinder option for me.

I’m hesitant to share my brief time on Lupron because I was at odds with my body at that time. I was fighting to save face, work full time, and live up to a set of predetermined expectations. I was counting on the drug to make me better, without defining what “better” was. I wasn’t in a mental place to buy larger pants or question the shame I felt as porphyria attacks continued to set me back. Plus, losing sleep affects anyone’s emotional capacity!

So there it is — my story. It’s just as much one of Lupron as it is one of anxiety, and the resistance that comes with being newly diagnosed with a rare disease. Every body is different, and everyone’s experience on a medication is personal. I urge women affected by monthly porphyria surges to talk with their physician, and with the many women who have benefited from Lupron. Don’t knock it until you’ve tried it.

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

Comments

Taylor F Binkley avatar

Taylor F Binkley

FYI - Panhematin is FDA approved ONLY for women whose menstrual cycles trigger their AHP (check their website). Therefore all use by men, children, menopausal & post-menopausal women, and women who (like yourself) suffer attacks triggered by things other than their menstrual cycle is "off-label use" (doctors choose to administer it despite its lack of FDA approval for those purposes).

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