Side effects of abiraterone acetate and degarelix.

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Hello all

So my recent psma scan revealed a tumor in my right iliac lymph node.

My doc has prescribed degarelix and abiraterone acetate with prednisone.

I was made aware of the side effects of these meds, and there are many. Some are tiredness, fatigue, muscle pain, while some are about elevated liver enzymes, bone thinning, hyper glycemia, low potassium, long qt syndrome etc.

I would like to hear from others on this forum what all side effects people had, and how were they managed.

What are the really serious ones? How did these meds affect the quality of life.

Thanks to all in advance

  • Hi !!

    I was on exactly the same treatment directly after I finished my radiation treatment and you have listed many of the common side effects when you’re on ADT; fatigue, hot flashes, tiredness and so on. Also common is loss of libido, ED or limitations in sexual functions and it really might impact your blood pressure. You may loose body hair and it can also affect your emotions and you can feel ’foginess’.

    What I’m saying is that ADT and Abiraterone have a loooooong list of side effects and you can be the lucky and have a walk in the park when your on this medication and then it can be bad. What you can do to mitigate the effects is eat well, sleep well and workout a lot. Working out is not easy when being tired and is feeling fatigue but just do it.

    Both treatments is extremely effective in doing it’s, lowering T-levels to really low levels. The main reason i stopped using Firmagon / Degarelix and started using Orgovyx is that I had really bad reactions in the injection spots when getting Firmagon and it kept getting worse. This is a rather common side effect of Firmagon compared to other ADTs.

    But they are good at doing there job and like I sad; side effects are extremely individual so, it’s a little bit of trial and error and push your MO to have lots of checkups in the beginning (PSA, T-levels, blood tests for liver, blood pressure and etc.). But I think you will be ok, like the most of us on ADT and perhaps with the addition of 2nd gen medication.

    Best wishes - Ulf

  • Hello  . It is good when you finally get all the information and are given a plan. The combinations of ADT and second generation antiandrogens can vary but all come with similar side effects. Lorraine  has written a very useful profile of her husband's journey on Abiraterone which you can read by clicking on her avatar. What side effects you get can vary but the fatigue and loss of muscle strength is common to most men so keep fit and try to incorporate some resistance exercises into your routine. Loss of libido and erectile disfunction can soon follow so looking after your penile health and maintaining blood flow from the start will help to keep you 'functioning'. You will probably notice a reduction in size of your man bits and may find standing to pee becomes less accurate so some men find it better to sit (I was fed up of paddling if I needed the toilet after my husband). There are many things which can help with this so if you want some pointers just ask. You will probably notice a reduction in size of your man bits and may find standing to pee becomes less accurate so some men find it better to sit (I was fed up of paddling if I needed the toilet after my husband). The hormone therapy can cause bone thinning so ask about calcium and vitamin D supplements and if you get hot flushes then some men find relief with sage tablets - before taking any supplements clear it with the professionals first. Some men find that they experience some bone pain and muscle aches in the first few weeks of starting hormone therapy as the body adjusts to the reduction in testosterone which can usually be treated with paracetamol. The Degarelix can cause localised pain and swelling which should disappear after a couple of days but as it is given every 28 days it is best to try and alternate the injection site to try and minimise this.

    With these drugs in particular it is important to have regular checkups and getting a blood pressure machine at home might be an idea. I am sure other will come on with some wise words but also come back if you have any questions.

    My husband has been on a different combination but generally has tolerated them well in 4 years but I have noticed that he is more emotional and the brain fog hits him at times.