After Lupron I have been having seizures

[darrylw]

Hi,

In December 2023 I decided to finally undergo treatment for my prostate cancer, Gleason scale 6, with a high PSA of 63 (or 48 on another test) I had had this cancer for eight years WITHOUT it spreading. But doctors kept warning (I would almost say harassing) me, so... I underwent one shot of lupron and 28 radiation therapies.

I have my thee-month shot on December 12th. I soon began feeling really really bad and fatigued which of course is many people's experience, but on February 14th ( yeah Valentines) I had an attack that doctors believed may have been a stroke or a "pre-stroke" because the left side of my body would not move correctly. I began twitching abnormally and fell down, and for a few hours could not coordinate properly. I have NO prior history of strokes. None. I recovered quickly and was let out of the hospital the following day, And I agree I felt back at base line.

I did not take another three month shot of lupron (not surprising, right?) and my lupron/radiation therapy appears to have worked well from the prostate therapy end. My psa dropped way down to indetectable levels. Still, I worry whether I was overtreated. Then four months after my first attack, on June 16 (just a week ago actually) I suffered another one! True, it had been a tiring hot day, which probably exacerbated my susceptibility. I was in a grocery story, and once again I began shaking uncontrollably on my left side, and I was again sent to emergency. I once again recovered soon and was out the following day.

This time the staff believed the attack was more likely a "seizure." They did my brain tests which were inconclusive and advised I take a drug call Keppra. I said NO WAY Just look up this drug, and you will discover it has so many bad psychological effects it's -- shall I say worse than Lupron? It can make you violent, self-destructive, or even suicidal. I also felt that the doctors I dealt with in emergency were completely unfamiliar with prostate cancer treatments and dismissed me when I tried to argue this all may have something to do with low testosterone. To them that whole discussion is just not their turf. They look blank, in other words. I have a history of high blood pressure, yes. But I have a hard time believing this strangeness in someone who HAS NEVER PREVIOUSLY HAD A SEIZURE OF ANY KIND is UNRELATED to my lupron shot.

I will have another appointment with my hormone therapy doctor in about 3 months. He is aware of my first attack (probably not aware of the second) . He DID test my testosterone in March, and it was LOW. I suspect it's higher now because I AM feeling better, stronger, and less lethargic. Strange, I am feeling better in many ways, but why am I having these seizures? What is happening? Is it possible that as my testosterone increases or my body returns to normalcy they will go away?

I don't have a more specific question than these, just worried by this situation. Everything is very vague, and scary. I have no idea whether I will have another seizure tomorrow, or never again in my life....

[tango65]

Even when Lupron has been associated with convulsions:

accessdata.fda.gov/drugsatf...

consider consulting with a neurologist to study correctly your neurological symptoms.

[street-air]

Since the introduction of Lupron it has been established that it can cause seizures and the FDA got that added to the label in 2008 as a side-effect to be aware of. The FDA even had a case where it happened while someone was driving and "almost caused a fatality". Then there are nasty side effects that continue 20 years later when it was used to delay puberty in kids: statnews.com/2017/02/02/lup...

[j-o-h-n]

Greetings darrylw,

Following from on-line A i and may not be up-to-date

Lupron is a brand name for leuprolide acetate, a medication that is commonly used in the treatment of hormone-sensitive conditions such as prostate cancer, endometriosis, and uterine fibroids. It is a type of gonadotropin-releasing hormone (GnRH) agonist that works by reducing the production of certain hormones in the body.

Uses of Lupron

Prostate Cancer:

Lupron is often used in the treatment of advanced prostate cancer. It reduces the production of testosterone, which can slow the growth of hormone-sensitive prostate cancer cells.

Endometriosis:

For women with endometriosis, Lupron helps to reduce estrogen levels, which can relieve pain and reduce the size of endometrial lesions.

Uterine Fibroids:

Lupron can shrink fibroids by lowering estrogen levels, which may reduce symptoms such as heavy menstrual bleeding and pelvic pain.

Precocious Puberty:

It is used in children to treat early onset puberty by delaying further development until a more appropriate age.

How Lupron Works

Lupron works by initially stimulating and then suppressing the pituitary gland, which reduces the production of luteinizing hormone (LH) and follicle-stimulating hormone (FSH). This decrease in LH and FSH leads to a significant drop in the levels of sex hormones (testosterone in men and estrogen in women).

Administration

Lupron is administered via injection, which can be given either under the skin (subcutaneous) or into a muscle (intramuscular). The injection schedule varies depending on the condition being treated and the specific formulation of Lupron:

Daily Injections: For some conditions, Lupron is given daily.

Monthly Injections: A common regimen for prostate cancer treatment is a monthly injection.

Depot Formulations: These are long-acting formulations that can be given every three months or even yearly, depending on the treatment plan.

Side Effects

As with any medication, Lupron can have side effects. Common side effects include:

Hot Flashes: One of the most common side effects, particularly in men undergoing treatment for prostate cancer and women being treated for endometriosis.

Decreased Libido: Lower levels of sex hormones can reduce sexual desire.

Bone Density Loss: Long-term use can lead to decreased bone density and an increased risk of osteoporosis.

Mood Changes: Some individuals may experience depression or mood swings.

Injection Site Reactions: Pain, redness, or swelling at the injection site.

Fatigue and Weakness: General feelings of tiredness and weakness.

Considerations and Monitoring

Regular Monitoring: Patients on Lupron need regular monitoring by their healthcare provider to check hormone levels and assess for side effects.

Bone Density: Bone density should be monitored, especially in long-term use.

Managing Side Effects: Doctors may recommend lifestyle changes, dietary adjustments, or additional medications to manage side effects.

Conclusion

Lupron is a powerful medication used in the management of several hormone-sensitive conditions, particularly advanced prostate cancer. It works by reducing the production of certain hormones, which can help control disease symptoms and progression. While effective, it can have significant side effects, so it requires careful monitoring and management by a healthcare provider. If you are considering or currently on Lupron, it is important to have ongoing discussions with your doctor to ensure the best possible treatment outcomes.

Good Luck, Good Health and Good Humor.

j-o-h-n

[SteveTheJ]

I am not a doctor and don't play one on TV but IMHO you should assume the seizures are not related to Lupron.

[Professorgary]

Due to the fact you are G6 and the Lupron was pre radiation I’ll assume you did not go on Casodex for two weeks before the Lupron injection. If this is true your body had no protection from the testosterone spike caused by the Lupron shot. Same thing happened to my brother, he didn’t make it. He had a fatal heart attack two days after Lupron injection.

[darrylw in reply to Professorgary]

Yes You are exactly right. The doctor did NOT prescribe me Casodex, and I remember this resulted in some confusion with the nurses. Several asked "Have you had your--" and I was like"No. The doctor did';t say anything about that" Furthermore in the first weeks after my injection I was expecting my you know what to completely not work, but for about two weeks that exact opposite happened,. I was even was on the verge of call the doctor to say "I don;t think the shot worked." This was obviously the testosterone spike you're talking about. I feel I was not advised about any danger associated with not taking Casodex, or advised about any of this.

[Professorgary in reply to darrylw]

It is mainly used in patients that have tumors and a flare could cause the tumor to rapidly grow and possibly put pressure on the spinal cord causing problems but a spike in testosterone can cause other issues as well. I have very minimal side effects after being on it two years. Started with Psa 5664 and now about 1. God bless.