Degarelix

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Just had my 3rd monthly Degarelix injection and had a worse reaction than the first 2.

The pain and swelling at the infection site is bad but I felt absolutely terrible about 6 hours after the injection. No specific pain, just felt like s*%t.

Feel a bit better this morning but not good.

The selling has increased and the pain is as bad.

Will mention it next week but rang 111 just for piece of mind.

Had an orthopedic appointment last week and he told me I will have to have metal plates fitted on my fema and thight bones as its spreading into those bones and I will be prone to unexpected breaks. No more rugby or x country running. As if.

6 appointments over the next 8 days. Even one on a Saturday evening at 7.30pm.

Chins up and keep fighting.

  • Hello  

    I am so sorry to read of your issues with the Degarelix injections.  I assume at least 1 of your 6 appointments is with oncology - you need to tell them of the issues and hope they will change the medication.

    I wish you well with your continued treatment - let us know how you get on and if you need any extra support.

    Best wishes - Brian.

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  • Yeah. Next Monday with my consultant, Prof Alison Birtle. 

  • Hi !

    It seems very common to have issues in the injection area. I started of with Firmagon and it always did it”s job; suppresing Testosterone for me but every month I had 3-4 days of pain and swolleness in the injection area. Finally, now in July i changed to Orgovyx because it’s the same as Firmagon (antagonist) and it’s a pill you take daily. For me the side effects was basically the same so, perhaps something to check with your MO

    Best wishes - Ulf

  • Hi. This drug was approved by NICE in the UK two months ago. A major advantage seems to be that it produces fewer cardiovascular events. I have attached the guidance for who would be eligible for it but it seems to be pretty wide.

    https://www.nice.org.uk/guidance/ta995

    The disadvantage is that care has to be taken if on certain medication or if you take supplements.

    Taking these drugs together can increase your risk for side effects.

    Examples of P-gp inhibitors include:

    You shouldn’t take P-gp inhibitors with Orgovyx unless your doctor determines that this is the best treatment for you. In this case, you’ll need to take Orgovyx first, at least 6 hours apart from the P-gp inhibitor. And you’ll be closely monitored for side effects from Orgovyx.

    Drugs that are both P-gp inducers and strong CYP3A inducers. Some drugs induce (increase amounts of) both P-gp and CYP3A proteins. Similar to P-gp, CYP3A is a group of proteins that help your body get rid of medications such as Orgovyx. Drugs that induce P-gp and CYP3A may decrease Orgovyx levels in your body. This could make Orgovyx less effective.

    Examples of drugs that are both P-gp inducers and strong CYP3A inducers include:

    You shouldn’t take these types of drugs with Orgovyx, unless your doctor thinks this is the best treatment for you. In this case, they’ll likely increase your Orgovyx dose to 240 milligrams (two tablets) every day.

    Orgovyx and herbs and supplements

    You shouldn’t take the herb St. John’s wort while using Orgovyx, unless your doctor approves. St. John’s wort could cause Orgovyx to be less effective or not work for treating the cancer. (This is because St. John’s wort is a P-gp inducer and a strong CYP3A inducer, like some of the drugs described above.)

    If your doctor determines that using St. John’s wort with Orgovyx is the best treatment for you, they’ll likely increase your Orgovyx dose to 240 milligrams (two tablets) every day.

    Check with your doctor or pharmacist before using any herbs or supplements while taking Orgovyx. They can tell you whether they’ll interact with Orgovyx.

  • Outstanding information as always. From a functional perspective Firmagon really did it’s job but I have seen lots of personal reviews regarding problem with the injection area. so, when I got the chance to change from Firmagon to Orgovyx as they are both Antagonist.

    It’s a pill so you of course need to be in control of handling your own medication as there is very little slack if missing a pill but like I Said, for me it’s a very practical choice.

    Best wishes - Ulf

  • The common problem of pain and swelling liked to Firmagon injections is that they are not given properly. Most injections are 'quickly in and quickly out'. I do my own and the technique is:

    Find a good place to relax. I use a sitting position in a chair.

    Take your time. Make sure that you won't be disturbed for 10 minutes

    Choose a site - I divided my abdomen into 4 and move from one segment to the next in a clockwise direction. I'm sure the diretion doesn't matter, but keeping a good spacing does.

    Swab the site

    Pinch up as much skin as possible

    Insert the needle very slowly, making sure that the angle is over 45 degrees to horizontal. Push the needle through the skin (ouch!) then as let the needle drop when breathing out and keep it still whilst breathing in. The skin moves up the needle with no need for you to move your fingers. This controls the speed and reduces 'waggle'. Keep hold of the pinched ridge of skin

    Now  very slowly push the syringe contents into the abdomen. This can be difficult as the piston sticks, but do your best.

    Keep the syringe into the injection site for at least a minute and a half. This is important and is not mentioned in the instructions, but it gives time for the liquid to form a little ball that will not leak out. Release the skin fold as you wait

    Very slowly remove the needle using the same technique of using the breathing movements (in reverse of course) to avoid the waggle that causes bruising.

    Put pressure on site for a minute or so to ensure no bleeding or leakage.

    I get a little swelling and the area is sensitive for the next day or so, but no no real pain.

    I started to do this as the first two were with the district nurse who not only made a mess of the injection, but put the wrong medication on my record form. When I pointed this out she blithely told me that it was the same drug, just a different commercial name (it wasn't).

    HTH

  • Hi !

    Impressive description and I can really understand that with your approach you really minimize the risk of reactions.

    The problem is still that, from what I’ve read, Degarelix has the highest proportions of injection reactions. For me I took it 6 times and my district nurse really took here time but still, the reactions for me increased by every injection and therefore it was a very easy descision to change to Orgovyx instead.

    But I totally agree with you that every little bit of detail should be handled to minimize the risk of reactions. Degarelix (Firmagon) is very good at doing it’s job and the risk profile is also better then other types of ADTs i believe.

    Best wishes - Ulf

  • Had my 5th individual Degarelix injection (after the initial double dose) just over two weeks ago and for the first time absolutely no reaction whatsoever, most of the others were extremely painful starting 4/5 hours after the injection, so much that I struggled to bend over and put socks/shoes etc on for almost a week afterwards