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The end of two years of hormone therapy

User
Posted 11 Sep 2024 at 13:42

Today marks the start of the next part of our journey. Two years of HT injections are now complete, so I've started this thread to document the return (hopefully) of testosterone, the lessening (also hopefully) of side effects, and subsequent PSA tests. 


Gee says just knowing that the Prostap3 is on its way out of his system, has lifted his spirits. 


His last 3 PSA 6 monthly tests have been:


0.31       0.2       0.31


Testosterone 0.6


Side effects to date:


Many hot flashes during the day


Muscle ache


Joint pain 


Feeling & being weaker than usual


Brain fog


Mood swings 


Fatigue 


Insomnia 


Anxiety 


Depression 


The last four being the worst.


Other than a multivitamin and the odd ibuprofen, the only thing he's taking is Tamsulosin, though he's considering asking to come off it, as he says there is no change in his flow any more, and he feels he doesn't need it.


Best wishes to all.


Elle & Gee xx


 

Edited by member 12 Sep 2024 at 12:32  | Reason: Additional info

User
Posted 11 Sep 2024 at 19:11

 Hi Elle and Gee,


Yep. Yep, Yep, Yep……..to all those side effects….Prostap3 is awful stuff๐Ÿ˜ฉ


I had my last Prostap on 4/4/2024, a date that will be imprinted on my mind forever. I too had 2 years of it as well. 6 months on(3 months since it ran out supposedly) and I notice a difference, flushes much better, joint aches and pains getting better but I’m working hard to regain that. I’m on sertraline for the anxiety and am staying on it until I know treatment has worked. Brain fog getting better and much more motivated t get on with life.


And I know what Gee means about being off it lifting his spirits, it certainly did for me on 4th July when I was due my next injection which I’d didn’t get, I couldn’t stop smiling especially as my PSA was undetectable.๐Ÿ˜Š


I am keeping a monthly diary on journey thread so we must compare notes. I have also sweet talked my GP into giving me testosterone tests at the same time as my PSA…might be worth a shot for Gee and compare readings with Andy62.


Good luck to both of you๐Ÿ˜Š


Derek

User
Posted 11 Sep 2024 at 13:42

Today marks the start of the next part of our journey. Two years of HT injections are now complete, so I've started this thread to document the return (hopefully) of testosterone, the lessening (also hopefully) of side effects, and subsequent PSA tests. 


Gee says just knowing that the Prostap3 is on its way out of his system, has lifted his spirits. 


His last 3 PSA 6 monthly tests have been:


0.31       0.2       0.31


Testosterone 0.6


Side effects to date:


Many hot flashes during the day


Muscle ache


Joint pain 


Feeling & being weaker than usual


Brain fog


Mood swings 


Fatigue 


Insomnia 


Anxiety 


Depression 


The last four being the worst.


Other than a multivitamin and the odd ibuprofen, the only thing he's taking is Tamsulosin, though he's considering asking to come off it, as he says there is no change in his flow any more, and he feels he doesn't need it.


Best wishes to all.


Elle & Gee xx


 

Edited by member 12 Sep 2024 at 12:32  | Reason: Additional info

User
Posted 14 Sep 2024 at 16:12

Hi Elle & Gee.


I am on Zoladex for my HT and have experienced most of those side effects. I think they are pretty much unavoidable. I was given 14 sessions of acupuncture that some people seem to benefit from but, alas, not me. One thing that has helped is Medroxyprogesterone. I still have most of the side effects, but my hot flushes are much less frequent. This helps a lot at night, and now I am only awoken with hot flushes a couple of times, rather than the four or five times before, and my insomnia has almost ceased. The Medroxy does take some time to kick in - nearly three months for me - so I'm glad I persisted with it.


Good luck and best wishes with your treatment.

User
Posted 07 Oct 2024 at 18:55

The one that got worse for me progressively was joint ache… I suppose that’s to be expected due to gradual muscle loss the longer you have zero testosterone. So, Keep these muscles working with weight bearing exercises. I believe there should be much more support and compulsion for men on HT to take part in this type of exercise. Mind you, I still have zero testosterone but my joints are getting better since I had my final jab in April. I started to notice a difference when the jab ran out in July and gradually things have improved especially with the joints. I would say thought that my energy levels have increased and I am encouraged to push myself harder to rebuild my strength. I look forward to the day when my libido hopefully returns๐Ÿคž๐Ÿคž๐Ÿคž


Good luck to all of you on your HT journeys…the sooner they find a solution which doesn’t involve this therapy the better. just try and do as much as you are physically able to do and keep smiling๐Ÿ˜Š


Derek

User
Posted 07 Oct 2024 at 23:41

My last HT injection (zoladex) was late Jan 2020. That means the pellet had dissolved away by April 2020. I think that is the time you can say the drug has cleared your system. However the effects of the drug take longer to clear your system. In my case my testosterone in August 2020 was 1.3 so above castrate level, but well below normal. I had me first morning erection on Christmas day 2020. By April 2021 my testosterone was 17.9 so back in the normal range. So for me the thing to note was that testosterone had barely recovered after four months, was probably recovered after 9 months and definitely recovered after 12 months. It seems we are all different, but I think my recovery was fairly normal.

Edited by member 08 Oct 2024 at 23:31  | Reason: Not specified

Dave

User
Posted 13 Oct 2024 at 08:59
I'm on lifetime HT. Used to have them in my belly but changed about 3 years ago to thighs and not affected by joint pain fortunately.
Just off to walk 20000 steps around Valencia ๐Ÿ‘
User
Posted 11 Sep 2024 at 14:30

7 more monthly degarelix and I will join you on the same journery , look forward to updates .


Best wishes


                    Mike

User
Posted 07 Oct 2024 at 10:29
Mine have been pretty much the same since I started HT was changed from Prostap 3 monthly to monthly Degarelix , injection reaction to Degarelix is nasty but side effects remain the same .
I was changed because my Testosterone was 1 with Prostap and yet remains 1 with Degarelix , 6 more to go .

Last PSA was 0.08 .

Best wishes John 1975 .

Mike .
User
Posted 07 Oct 2024 at 11:07

Thanks Mike,


Fingers cross mine stay the same too, currently the side effects are not pleasant but are manageable. I'm on 12 week Zoladex after the initial first 4 week one. We have all the dates listed on our blackboard in the kitchen. I'm taking great satisfaction in crossing them off, admittedly only two crosses so far ๐Ÿ˜ next one beginning of Nov


All the best for your remaining ones


John

User
Posted 08 Oct 2024 at 06:57

Originally Posted by: Online Community Member
I had me first morning erection on Christmas day 2020.


๐ŸŽ๐Ÿคถ๐ŸŽ„๐Ÿพ๐Ÿฅ‚Merry Xmas!๐Ÿฅ‚๐Ÿฅ‚๐ŸŽ„๐Ÿคถ๐ŸŽ

Edited by member 08 Oct 2024 at 07:08  | Reason: Not specified

User
Posted 11 Oct 2024 at 16:41

That’s interesting Elle….I had mine in my belly(alternate sides) and aches and pains mainly in my hips๐Ÿค”๐Ÿค”๐Ÿค”

Edited by member 11 Oct 2024 at 16:41  | Reason: Not specified

User
Posted 14 Oct 2024 at 02:48

I got some hip pain when I started on HT, but it went away quite quickly.

User
Posted 12 Dec 2024 at 18:39

It's now been 3 months since Gee's last Prostap3 ran out. He was slowly starting to feel better, as in less achy & stiff, until Covid paid us its first ever visit on bonfire night. The Friday before, he'd called at the chemist that's attached to the GP surgery, to pick up his Tamsulosin, and on coming out, he mentioned that there was an unsavoury character in there coughing their head off, and effing & jeffing in everyone's faces. The following Tuesday, he awoke with a red raw sore throat, the reddest I've ever seen. He could hardly swallow, couldn't eat at all, and said he felt dreadful. I bought some covid tests, and his immediately showed positive. The next 3 days he spent asleep in bed, only waking occasionally for a sip of water or a wee. 


We all eventually tested positive, with our eldest & I just having a slight cough, and our youngest having no symptoms at all. The last time any of us had a jab was December '21. 


After 7 days he did another test, which was negative, but he was left with a relentless, hacking cough.


The following week he noticed that his heart was beating faster than usual, but put it down to his body still fighting the remnants of covid. Then on the 27th, he awoke in a terrible state. He was shaking, said he couldn't breathe, and felt like he was going to pass out. As it didn't seem to be passing, we went to A&E. They did 2 ECG's, a blood test and a urine test. All came back fine, and he was sent home with a prescription for 3 diazepam, which he didn't want, and was told it was 'just' a nocturnal panic attack.


Two days later, after a spot of Christmas shopping, he got a stabbing pain in his right side, which, in the space of 15 minutes, got worse and worse til he was doubled over in agony. Another visit to A&E, and he was told it was costochondritis, caused by the coughing of covid. He was sent home with a prescription for 5 days of 400mg of ibuprofen. 


The pain in his side has now almost gone, but the high resting heart rate has started to worry him, as it's between 95 & 120 when doing nothing.


After seeing his GP today, he's been prescribed a month of Propranolol & Sertraline. He has to go back for another ECG tomorrow, and has an appointment for a blood test next Tuesday that the referral letter says will test for, tfgps thyroid not on t4, nfl lipid profile non fasting, and (a1c) hba1c. (I'll Google what they are later).


He's had 2 Propranolol so far today, and 1 Sertraline, and he says he feels somewhat calmer, though I doubt either have worked that quickly.


Hopefully it won't be a long wait for the blood test results. Then around the 18th of January, it's the dreaded first PSA test since coming off Prostap3.


Best wishes to all.


Elle & Gee xx

User
Posted 12 Dec 2024 at 21:13
My word Elle&Gee, what a story. I hope things are now on the up.

To be fair, propanolol should have positive effects on fast heart rate pretty quickly, so improve calmness. (Sertraline not so immediate).

I also had some of those tests after finishing HT and (salvage in my case) RT. HbA1c (test for type 2 diabetes) was no problem, but the doctor recommended taking a statin on the basis of a cholesterol reading that had stayed the same for over 20 years. (I went with it after reading that it also reduces your risk of dementia).

It may only have been an impression, but the HT/RT combination did seem to make me suffer worse from even minor infections. It would be worth Gee getting up to date on his vaccinations. Even two years later I still need more sleep than I used to, but other consequences of HT have very slowly reduced.
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User
Posted 11 Sep 2024 at 14:30

7 more monthly degarelix and I will join you on the same journery , look forward to updates .


Best wishes


                    Mike

User
Posted 11 Sep 2024 at 19:11

 Hi Elle and Gee,


Yep. Yep, Yep, Yep……..to all those side effects….Prostap3 is awful stuff๐Ÿ˜ฉ


I had my last Prostap on 4/4/2024, a date that will be imprinted on my mind forever. I too had 2 years of it as well. 6 months on(3 months since it ran out supposedly) and I notice a difference, flushes much better, joint aches and pains getting better but I’m working hard to regain that. I’m on sertraline for the anxiety and am staying on it until I know treatment has worked. Brain fog getting better and much more motivated t get on with life.


And I know what Gee means about being off it lifting his spirits, it certainly did for me on 4th July when I was due my next injection which I’d didn’t get, I couldn’t stop smiling especially as my PSA was undetectable.๐Ÿ˜Š


I am keeping a monthly diary on journey thread so we must compare notes. I have also sweet talked my GP into giving me testosterone tests at the same time as my PSA…might be worth a shot for Gee and compare readings with Andy62.


Good luck to both of you๐Ÿ˜Š


Derek

User
Posted 14 Sep 2024 at 16:12

Hi Elle & Gee.


I am on Zoladex for my HT and have experienced most of those side effects. I think they are pretty much unavoidable. I was given 14 sessions of acupuncture that some people seem to benefit from but, alas, not me. One thing that has helped is Medroxyprogesterone. I still have most of the side effects, but my hot flushes are much less frequent. This helps a lot at night, and now I am only awoken with hot flushes a couple of times, rather than the four or five times before, and my insomnia has almost ceased. The Medroxy does take some time to kick in - nearly three months for me - so I'm glad I persisted with it.


Good luck and best wishes with your treatment.

User
Posted 06 Oct 2024 at 09:49

Does anyone know how long Prostap3 stays in your system and continues to work for, when treatment has ended? 


Also, is there any chance of testosterone having returned, even a tiny bit, by mid January, when he is due his next PSA test?


Elle x

User
Posted 07 Oct 2024 at 10:00

Do HT side effects tend to get worse? I'm three months in and have aches in my elbows, hot flushes, tiredness. They're relatively mild at the moment, I'm keeping active which I think is helping mentally. Oh and of course loss of libido, no more morning glory!

User
Posted 07 Oct 2024 at 10:29
Mine have been pretty much the same since I started HT was changed from Prostap 3 monthly to monthly Degarelix , injection reaction to Degarelix is nasty but side effects remain the same .
I was changed because my Testosterone was 1 with Prostap and yet remains 1 with Degarelix , 6 more to go .

Last PSA was 0.08 .

Best wishes John 1975 .

Mike .
User
Posted 07 Oct 2024 at 11:07

Thanks Mike,


Fingers cross mine stay the same too, currently the side effects are not pleasant but are manageable. I'm on 12 week Zoladex after the initial first 4 week one. We have all the dates listed on our blackboard in the kitchen. I'm taking great satisfaction in crossing them off, admittedly only two crosses so far ๐Ÿ˜ next one beginning of Nov


All the best for your remaining ones


John

User
Posted 07 Oct 2024 at 18:55

The one that got worse for me progressively was joint ache… I suppose that’s to be expected due to gradual muscle loss the longer you have zero testosterone. So, Keep these muscles working with weight bearing exercises. I believe there should be much more support and compulsion for men on HT to take part in this type of exercise. Mind you, I still have zero testosterone but my joints are getting better since I had my final jab in April. I started to notice a difference when the jab ran out in July and gradually things have improved especially with the joints. I would say thought that my energy levels have increased and I am encouraged to push myself harder to rebuild my strength. I look forward to the day when my libido hopefully returns๐Ÿคž๐Ÿคž๐Ÿคž


Good luck to all of you on your HT journeys…the sooner they find a solution which doesn’t involve this therapy the better. just try and do as much as you are physically able to do and keep smiling๐Ÿ˜Š


Derek

User
Posted 07 Oct 2024 at 20:30
Good luck, I wish you well is sadly the best I can say. I was on Zoladex three years, had my last implant January 2023. Nearly two years later I still have the side effects. Tired, no energy, hot flushes, minimal libido and 100% erectile disfunction. November 2023 my testosterone was undetectable. May this year it was 1.9 nmol/l (6.7 nmol/l being the bottom of the normal reference range). Six months on and due to have my next bloods shortly I feel exactly the same so do not expect to be anywhere near normal, nearly five years after starting HT.

The physical effects are bad enough but it has also taken a terrible toll on my mental health. No matter how long I sleep at night I wake up tired. I have to sleep most afternoons and struggle to motivate myself to carry out the smallest task. My house has become a mess with jobs piling up. I shall be pushing my oncologist for TRT but have little hope of a positive response. To be honest I'm sick of it and near the end of my rope.
User
Posted 07 Oct 2024 at 20:40

My (vague) understanding is that you should be clear of HT circa 6 to 9 months after the last injection...but its probably going to be different per individual. I had my last Prostrap3 (after 3 years of taking it) in mid Oct 23....First 'post HT' blood test in March 24 - PSA was untraceable....just had one in September - PSA came back at 0.04 (in line with expectations per my CNS). I haven't had my testosterone measured with PSA yet (requested on next test) but activity 'down below' has improved markedly over the last 6 months.

Edited by member 07 Oct 2024 at 20:43  | Reason: Typo

User
Posted 07 Oct 2024 at 23:09

Originally Posted by: Online Community Member


My (vague) understanding is that you should be clear of HT circa 6 to 9 months after the last injection...but its probably going to be different per individual. I had my last Prostrap3 (after 3 years of taking it) in mid Oct 23....First 'post HT' blood test in March 24 - PSA was untraceable....just had one in September - PSA came back at 0.04 (in line with expectations per my CNS). I haven't had my testosterone measured with PSA yet (requested on next test) but activity 'down below' has improved markedly over the last 6 months.



That used to be my understanding.  One year and 10 months after my last injection and I'm not clear of it.  See my post above.

User
Posted 07 Oct 2024 at 23:41

My last HT injection (zoladex) was late Jan 2020. That means the pellet had dissolved away by April 2020. I think that is the time you can say the drug has cleared your system. However the effects of the drug take longer to clear your system. In my case my testosterone in August 2020 was 1.3 so above castrate level, but well below normal. I had me first morning erection on Christmas day 2020. By April 2021 my testosterone was 17.9 so back in the normal range. So for me the thing to note was that testosterone had barely recovered after four months, was probably recovered after 9 months and definitely recovered after 12 months. It seems we are all different, but I think my recovery was fairly normal.

Edited by member 08 Oct 2024 at 23:31  | Reason: Not specified

Dave

User
Posted 08 Oct 2024 at 06:57

Originally Posted by: Online Community Member
I had me first morning erection on Christmas day 2020.


๐ŸŽ๐Ÿคถ๐ŸŽ„๐Ÿพ๐Ÿฅ‚Merry Xmas!๐Ÿฅ‚๐Ÿฅ‚๐ŸŽ„๐Ÿคถ๐ŸŽ

Edited by member 08 Oct 2024 at 07:08  | Reason: Not specified

User
Posted 11 Oct 2024 at 14:08

Well, it's just over a month since the Prostap3 ran out. Last week he said he felt the worst he's ever felt. He struggled to get out of bed, and said his joint pain was worse than ever. His anxiety, was through the roof, and he hardly slept at all. This week, he says he feels so much better. The joint pain & muscle ache has halved, his constant on edge-ness has gone. His body isn't stiff and tense when waking up, and he can reach over his shoulder to scrub his back. 


Even if it only lasts a short while, it's not half lifted his spirits. So much so that he's bought himself another motorbike to motivate him to get moving and feel stronger.


Does anyone know if the location of the HT injections has any bearing on where you get the majority of joint ache & muscle pain? Gee had all his in his upper arms, and his elbows, wrist & shoulders were affected the most.


Best wishes to all.


Elle x

User
Posted 11 Oct 2024 at 16:08

Originally Posted by: Online Community Member


Does anyone know if the location of the HT injections has any bearing on where you get the majority of joint ache & muscle pain? Gee had all his in his upper arms, and his elbows, wrist & shoulders were affected the most.


Best wishes to all.


Elle x



Personally I wouldn't have thought so, but others might have had different experience.  All of my Zoladex injections were in my belly and I got the pains in my legs, arms, hands, shoulders etc.  My hands and ankles were worst of all yet they were probably the furthest points from the injection sites!

User
Posted 11 Oct 2024 at 16:41

That’s interesting Elle….I had mine in my belly(alternate sides) and aches and pains mainly in my hips๐Ÿค”๐Ÿค”๐Ÿค”

Edited by member 11 Oct 2024 at 16:41  | Reason: Not specified

User
Posted 13 Oct 2024 at 08:59
I'm on lifetime HT. Used to have them in my belly but changed about 3 years ago to thighs and not affected by joint pain fortunately.
Just off to walk 20000 steps around Valencia ๐Ÿ‘
User
Posted 14 Oct 2024 at 00:06

My OH is at the beginning of his HT journey - had his first Prostap injection a fortnight ago - so it’s really encouraging to hear you’ve had no joint pain at all! Thank you for posting this. ๐Ÿ˜Š

User
Posted 14 Oct 2024 at 02:48

I got some hip pain when I started on HT, but it went away quite quickly.

User
Posted 12 Dec 2024 at 18:39

It's now been 3 months since Gee's last Prostap3 ran out. He was slowly starting to feel better, as in less achy & stiff, until Covid paid us its first ever visit on bonfire night. The Friday before, he'd called at the chemist that's attached to the GP surgery, to pick up his Tamsulosin, and on coming out, he mentioned that there was an unsavoury character in there coughing their head off, and effing & jeffing in everyone's faces. The following Tuesday, he awoke with a red raw sore throat, the reddest I've ever seen. He could hardly swallow, couldn't eat at all, and said he felt dreadful. I bought some covid tests, and his immediately showed positive. The next 3 days he spent asleep in bed, only waking occasionally for a sip of water or a wee. 


We all eventually tested positive, with our eldest & I just having a slight cough, and our youngest having no symptoms at all. The last time any of us had a jab was December '21. 


After 7 days he did another test, which was negative, but he was left with a relentless, hacking cough.


The following week he noticed that his heart was beating faster than usual, but put it down to his body still fighting the remnants of covid. Then on the 27th, he awoke in a terrible state. He was shaking, said he couldn't breathe, and felt like he was going to pass out. As it didn't seem to be passing, we went to A&E. They did 2 ECG's, a blood test and a urine test. All came back fine, and he was sent home with a prescription for 3 diazepam, which he didn't want, and was told it was 'just' a nocturnal panic attack.


Two days later, after a spot of Christmas shopping, he got a stabbing pain in his right side, which, in the space of 15 minutes, got worse and worse til he was doubled over in agony. Another visit to A&E, and he was told it was costochondritis, caused by the coughing of covid. He was sent home with a prescription for 5 days of 400mg of ibuprofen. 


The pain in his side has now almost gone, but the high resting heart rate has started to worry him, as it's between 95 & 120 when doing nothing.


After seeing his GP today, he's been prescribed a month of Propranolol & Sertraline. He has to go back for another ECG tomorrow, and has an appointment for a blood test next Tuesday that the referral letter says will test for, tfgps thyroid not on t4, nfl lipid profile non fasting, and (a1c) hba1c. (I'll Google what they are later).


He's had 2 Propranolol so far today, and 1 Sertraline, and he says he feels somewhat calmer, though I doubt either have worked that quickly.


Hopefully it won't be a long wait for the blood test results. Then around the 18th of January, it's the dreaded first PSA test since coming off Prostap3.


Best wishes to all.


Elle & Gee xx

User
Posted 12 Dec 2024 at 21:13
My word Elle&Gee, what a story. I hope things are now on the up.

To be fair, propanolol should have positive effects on fast heart rate pretty quickly, so improve calmness. (Sertraline not so immediate).

I also had some of those tests after finishing HT and (salvage in my case) RT. HbA1c (test for type 2 diabetes) was no problem, but the doctor recommended taking a statin on the basis of a cholesterol reading that had stayed the same for over 20 years. (I went with it after reading that it also reduces your risk of dementia).

It may only have been an impression, but the HT/RT combination did seem to make me suffer worse from even minor infections. It would be worth Gee getting up to date on his vaccinations. Even two years later I still need more sleep than I used to, but other consequences of HT have very slowly reduced.
User
Posted 15 Dec 2024 at 18:29

Does anyone know if it's ok to take Sertraline whilst on Tamsulosin? 


Gee took 1 tablet, then saw on Google that it might not be wise to take them together.


He's not taken anymore since, as he wants to speak to his GP again, and confirm with PEASS. 


Any advice would be greatly appreciated.


Elle xx

User
Posted 15 Dec 2024 at 21:10
As far as I can tell (from the patient information leaflets which are published on the web) there is not an established interaction between those drugs.

The best and quickest way to get advice is to ask the pharmacy which dispensed the medicines, it is exactly the sort of thing pharmacists are expert in.
 
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