Search results for "anti-androgen withdrawal"

Another update which is just as hard as previous posts. Following discharge from the hospice we came home to a new world but having thought coming home would be much easier it has been the hardest thing I have ever had to cope with. Husband started to hallucinate, with anxiety, delirium and confusion every night, wandering around the house walking up and down ramps which is so unsafe. He said he was in prison and he didn’t know who I was and wanted to go home.

I won’t go into all the dreadful details but calling the rapid response team out of hours a specialist nurse came round to talk. She decided we should stop Clonazepam which was taken for anxiety and pain four days after we got home.  No change on this.  We then stopped Pregabalin a week later and to monitor if he started to have more pain. First night all okay, no change in his behaviour but no additional pain. At 4.30am one night lying on the sofa in his room I thought hard about how his behaviour was not like this before he went into the hospice, so it had to be medication. It was not the Pregabalin. I identified Mirtazapine as a possible culprit and asked if we could stop taking it. The specialist nurse consulted with the consultant GP, and we all agreed to stop Mirtazapine and not to taper it. I was told it would take a few days for the medication to clear. I wasn’t told it would get much worse in the process as medication clears and before the brain has had time to adjust and take over.

Day 3 was terrible; this has been a real crisis week. Daughters have taken turns to be on motion detector alarm duty for when he wanders in the night as I had gone more than a week on very little sleep. We are now in Day 5 and I can see less anxiety, he is less frightened and he knows who I am. He is tired and has lost his appetite, but this is all so much better than before. If I hadn’t suggested to try coming off Mirtazapine I am not sure I could have coped with him at home. So I find myself unpicking the work of the hospice team. I am sure his pain was from the osteopathic fractures and the wheelchair use and no walking up and down stairs while he was in the hospice allowed these fractures to heal. I hope no-one else has to deal with anything like this but sharing in case it lets you think a bit deeper into medication side effects. Looking at research, it is a known side effect for Mirtazapine withdrawal to be like this and for frail and elderly people to suffer from delirium and hallucination.

We aren't out of the problems yet but fingers crossed I have made a real discovery here to stop the dreadul side effects.  We have mafde it to Day 6 - much calmer and more sleep. 

Take care everyone

Edited: by member 18 Oct 2026 at 09:32  | Reason: Added in another medication we had stopped.

Hi Engineerken

Firstly congratulations on making it to number 6!  I got to no 6 at the end of May this year.

Remember that the cycle is three weekly, with the third week supposedly with you feeling better to go into the next round. So if your sixth dose was only four weeks ago then you are just about in the starting to feel a bit better phase I would guess.

I found that there was a cumulative effect from the doses, with the recovery period being shorter each time as the bad effect period seemed to get longer... However I kept up my exercise regime of physical activity of weights, resistance bands and static bike and began to feel better after a few weeks, that is until the steroid withdrawal kicked in.  I was given a programme of around six weeks to taper down the steroids until having one dose a week.  I found this really difficult to deal with and the fatigue was extreme - but I pushed through it.

My hair and beard started to come back after about three months, and I lost that podgy steroid face around the same time.  However as I am still on HT I then started to lose body hair around the same time....

I got fit enough to ride in the static bike challenge in Sir Chris Hoy's Tour de 4 three weeks ago and smashed my target of 12km - achieving 15km - in a thirty minute slot.

Just think in months rather than weeks (from my own experience).

Good luck with the recovery - and don't forget to click on our names of roundels to get to our personal stories. 

Edited: by member 26 Sep 2026 at 14:49  | Reason: additional text

I'm sorry for your situation and that of many others.

I did a contribution to the screening committee. One of my points was too much emphasis on over-treatment (some of which I disputed anyway), and not enough emphasis on men who missed the opportunity to be cured.

We have just done exactly the same as the US did in 2012, discourage PSA testing. So we know exactly what will happen. In the next few years, the percentage of later stage and metastatic diagnoses will increase, and the percentage of early stage diagnoses will decrease. In the US, this became blindingly obvious within 5 years, and they announced they where reversing the decision, although that took another year.

Having said that, there are now a lot of GPs who do know better than the NSC. I was doing an awareness event yesterday, and there were many questions on screening and the recent withdrawal of the Prostate Cancer Risk Management Pathway (PCRMP) which I had to explain. After my talk (which was for a GP surgery), the GP stood up and said they'd discussed it in the practice, and decided they would still give a PSA test to any man who asked, but that's going to be inconsistent and some men aren't going to be able to get one that way. As you mention, there's lots of charity testing, and that's increasing at a high rate. 

This sounds interesting, and I think the future of Lutetium 177 is likely to be up-front.

Which anti-androgen are you on?
Are you on any LHRH/GnRH ADT medications or ARPI medications?

When coming off LHRH/GnRH ADT medications, I always recommend having your Testosterone checked with each PSA test, because you can't make sense of PSA readings unless you know where your Testosterone is. Using anti-androgens alone boosts Testosterone anyway which might make this more difficult to track, but probably still worth trying.

Do keep us informed, and best wishes.

Hi Chaps, 

Just reporting in. Suffering slightly from withdrawal effects inflicted by the World Cup. 
One week on from my Prostap Independence Day and, well, my hot sweats are going through the roof. No need to cart barrels of water up to my drought affected allotment as all I have to do is go up and shake my head to water my plants 😬. 
I consulted Dr Google who informed me that my brain is confused due to the shift in hormones caused by the lessening affect of the last Prostap jab. And that the confusion means that my body temperature thermostat is up the swanny.

He (or she) also gave some advice to alleviate these worsening symptoms as follows:” Lifestyle Adjustments: Avoid common triggers such as caffeine, spicy foods, alcohol, and very warm environments.”

So, what do you reckon?
Looks like I’ll be carrying on sweating as I reckon that I’ve earned my curry and beer this week 😃🍺.

Have a good one, 

SpongeBob.

Edited: by member 23 Jul 2026 at 23:08  | Reason: Not specified

Hello Crispin

I'm not a scientist, but I'm rejoicing in your good news. I hope that the treatment can be adjusted to improve your quality of life.

Hello everyone,

I wanted to share a brief update on my journey in the hope it might help others looking into advanced staging and early theranostics.

A couple of years ago, I had a highly suspicious PI-RADS 5 lesion on an MRI, but a targeted biopsy came back completely negative. My local doctors told me not to worry, but my PSA kept rising. Trusting the data trend, I pushed for a private 18F-PSMA PET scan. It completely changed my staging, revealing a dominant metastasis in my pelvic bone before the cancer had breached the prostate capsule.

After doing extensive research as a scientist, I chose to look outside standard protocols. I traveled to a specialist theranostics clinic in Germany to receive Lutetium-177 PSMA radioligand therapy early, while my disease was still hormone-sensitive. We also ran a genomic liquid biopsy and found I carry a somatic FANCA mutation, which likely made the cancer highly sensitive to the radiation.

After just two cycles of Lutetium alongside an anti-androgen, my PSA became completely undetectable (<0.01) and my latest follow-up PSMA-PET scans show a complete molecular response—the bone metastasis has completely disappeared. I'm currently dealing with the standard intense fatigue from the hormone blockade, and my oncologist and I are discussing safely de-escalating treatment soon to get my quality of life back.

I'm currently co-authoring a formal medical case report on this protocol with my treating professor in Germany. If anyone is navigating a false-negative biopsy, dealing with hormone-sensitive metastatic disease, or considering traveling for early radioligand therapy, I’d be very glad to share what I've learned about the process.

From NICE

So is the Bicalutamide a wise choice @150mg daily as regards side effects?

Anyone know why it's a better choice than the other drugs if you're active, I will clarify via my nurse?

The radiation treatment when it comes around will be for 1 month every weekday to the prostate bed and lymph nodes. Any idea what I could expect as regards side effects and how it will effect going to work. It will involve about 2-3 hours of travel each day.

Any advice much appreciated, thanks folks :)

The hormone therapy will still be suppressing the cancer cells it always has. The problem is that some newer mutation cells have cropped up too for which the HT doesn't work.

You can't stay on Bicalutamide if that stops working, because one way it stops working is that the cancer mutates to use it instead of the Testosterone. This is why there can be a PSA drop when you come off Bicalutamide (which is called Anti-Androgen Withdrawal Syndrome, AAWS).