Orgovyx Allergic Reaction

Posted by scbrett01 @scbrett01, 3 days ago

started on Orgovyx 2 months ago. Over the past week developed lip swelling on two occasions and hives. No changes in medications and no history of allergies. Has anyone experienced similar reaction to Orgovyx? Orgovyx temporarily on hold. Suspect that I may be converted to Lupron to complete 6 months of ADT.

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Profile picture for brianjarvis @brianjarvis

@nikolai57 Regarding the T spike —>

After starting hormone therapy (like Eligard, Lupron, etc), the body realizes testosterone (T) are slowly dropping, and tells the body to produce more T to offset the slow drop. This may cause a brief “spike” in T which can result in what is called "tumor flare” or “testosterone flare.” - not a good thing to happen since prostate cancer feeds on T.

This temporary flare can be managed by first taking Bicalutimide (Casodex) which blocks T from attaching to prostate cancer cells, which reduces the risk of tumor flare when hormone therapy is started.

Tumor flare does not last long and will go away as the T level goes further down after a hormone injection.

On the other hand, when starting with Relugolix (Orgovyx) or Firmagon, T levels drop so quickly that the body doesn’t have time to realize that T levels are dropping, thus the “testosterone flare” effect doesn’t occur.

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@brianjarvis Although the results are as you describe them, the biochemical process is more complicated than that. Eligard, Lupron, etc. are T agonists that stimulate the pituitary gland to temporarily produce more T (the flare). The outcome is that the pituitary down-regulates the T receptors and T levels drop. Orgovyx and Degarelix are examples of T antagonists that bind to the receptors and block the pituitary from producing T. This results in an immediate drop in T. I’ve probably oversimplified, and I’m not a biochemist or physician, so please correct any errors in my explanation.

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Profile picture for scbrett01 @scbrett01

@nikolai57 -How long were you on the Lupron?

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@scbrett01
I know you were asking someone else About how long they were on Lupron. Just for information I was on it for six years. Now on Orgovyx.

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Profile picture for scbrett01 @scbrett01

@nikolai57 -How long were you on the Lupron?

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@scbrett01 Following RP with follow-up lymph dissection, my PSA was 4. Pylarify scan showed no solid tumors. I did the one month of Orgovyx followed by 23 months of Lupron+abiraterone+prednisone for a total of 24 months of ADT. I also underwent 39 salvage radiation treatments. 12 months out from treatment, my PSA remains undetectable. My total testosterone has been normal for 6 months. Free testosterone is still under normal. But I feel great! Strength and stamina continue to return, and other physiological changes from the treatment continue to reverse. I still have some fatigue, but that’s easily addressed with good sleep and the occasional nap. I do suffer from bilateral neuropathy, which may have been caused by the radiation and/or bone density loss in the spine from the ADT. But even the neuropathy is better than it was at its height. I’m on Reclast to address the bone density loss. I get a DEXA scan at the end of the month to see how I’m doing after two treatments.

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Profile picture for nikolai57 @nikolai57

@brianjarvis Although the results are as you describe them, the biochemical process is more complicated than that. Eligard, Lupron, etc. are T agonists that stimulate the pituitary gland to temporarily produce more T (the flare). The outcome is that the pituitary down-regulates the T receptors and T levels drop. Orgovyx and Degarelix are examples of T antagonists that bind to the receptors and block the pituitary from producing T. This results in an immediate drop in T. I’ve probably oversimplified, and I’m not a biochemist or physician, so please correct any errors in my explanation.

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@nikolai57 It’s always “more complicated than that.” But, for the purposes of this forum, I felt that a simplified layman’s level of explanation was sufficient. (Getting into the aspects of LHRH-agonists and LHRH Antagonists would have then required further explanation.

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Profile picture for brianjarvis @brianjarvis

@nikolai57 It’s always “more complicated than that.” But, for the purposes of this forum, I felt that a simplified layman’s level of explanation was sufficient. (Getting into the aspects of LHRH-agonists and LHRH Antagonists would have then required further explanation.

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@brianjarvis Got it. Just thought that the statement, "the body realizes testosterone (T) are slowly dropping, and tells the body to produce more T to offset the slow drop,” was not quite accurate, but perhaps I’m mistaken. I thought that the agonist stimulated MORE T production, and that the turning off of T production was in reaction to that.

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Profile picture for heavyphil @heavyphil

Odd that you should have ‘allergic’ reaction 2 months after starting it; but I guess it could happen.
Can you pinpoint exactly when these reactions occurred - minutes, hours after taking? Did it occur after eating?
The reason I ask is that it could be tick bite related and you may be getting a reaction from meat/meat byproduct eaten 2-4 hrs before noticing symptoms.
I had a meat allergy - it’s called Alpha-gal Syndrome- and had no problem with Orgovyx; but I was not eating meat either.
This allergy has become more widespread in the US in the past 2 years and is seen in areas previously untouched.
There is a simple blood test for it and may be worth it, since IMO, Orgovyx is a damned good drug…Best,
Phil

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@heavyphil - lip swelling occurred the following morning and more than 8 hours post dose unrelated to eating. I then also had 2 episodes of hives on consecutive days.

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