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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I have small little red spots all over my stomach/chest which could either be from Orgovyx or Nubeqa. I am not sure. I’ve had them for a fairly long time, Been on both drugs for over two years. The spots are very small and Hard to recognize, but there are a lot of them. I never feel the spots they are just there.

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Was there a reason or concern which led you to initially start with Orgovyx rather then Lupron (or another ADT)?

On the other hand, sometimes Orgovyx is used first (to lower testosterone quickly) and then switch to Lupron, Eligard, or other ADT. So, the switch you’re doing due to allergy, is sometimes done anyway.

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Orgovyx has a more rapid onset and is taken orally. Testosterone rebound may also be more rapid once treatment is completed.

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Within a week of first taking ORGOVYX (relugolix) I had a swelling of the lip. Diphenhydramine (BENADRYL) 50 mg reduced the swelling never to return.

Recommendation in general: Unless there is a time urgent need to start a new medication, avoid starting on a weekend, then take the first pill after the morning rush hour during the week. (In the very unlikely possibility of an acute anaphylactic reaction requiring emergency care)

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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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Profile picture for brianjarvis @brianjarvis

Was there a reason or concern which led you to initially start with Orgovyx rather then Lupron (or another ADT)?

On the other hand, sometimes Orgovyx is used first (to lower testosterone quickly) and then switch to Lupron, Eligard, or other ADT. So, the switch you’re doing due to allergy, is sometimes done anyway.

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@brianjarvis Not only does Orgovyx lower T quickly, it also prevents the initial T spike that you get when starting with lupron and abiraterone.

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I did not getting swelling on Orgvyx, but I did get an awful, constant, metallic taste in my mouth. Since I was doing only a one-month course to be followed by lupron and abiraterone, I tolerated it.

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Profile picture for nikolai57 @nikolai57

I did not getting swelling on Orgvyx, but I did get an awful, constant, metallic taste in my mouth. Since I was doing only a one-month course to be followed by lupron and abiraterone, I tolerated it.

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@nikolai57 -How long were you on the Lupron?

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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 - The lip swelling occurred the following morning unrelated to administration to food the night before. I then developed significant hives on two occasions 2 days later managed with antihistamines and started of medrol dose pack. Following up with med onc on start of Lupron.

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Profile picture for nikolai57 @nikolai57

@brianjarvis Not only does Orgovyx lower T quickly, it also prevents the initial T spike that you get when starting with lupron and abiraterone.

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@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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