HT and stiff knees

HT and stiff knees

User

Posted 12 Feb 2024 at 22:26

What I have noticed on Zoladox is that during the middle month of the 3 month implant injection I have really stiff knees which tailor off in the 3rd month and then once the 1st month implant is given it starts to niggle me towards the end of the month. This is a pattern I have logged as wasn’t sure at first it was the HT. Convinced it’s the Zoladox but GP dismissed it and said stiff knees are not a side effect of HT. Any others get this? Thanks.

Andy

User

Posted 15 Feb 2024 at 16:45

I have been on Zoladex for over two years. In the past year, my joint stiffness and pain have got a lot worse. For me, the pain is worst at night to the point of waking me. Paracetamol does not help much. Together with the night sweats and hot flushes joint pain is a well-known side effect of HT. Such side effects were pointed out when I began the treatment. Physiotherapy has helped but it has not eliminated the pain completely. I believe that these side effects lessen considerably once the Zoladex is out of the system although this can take several months.

User

Posted 13 Feb 2024 at 07:44

Hi Gaffer,

Yep! I feel for you, yet another post highlighting the debilitating effects of ADT on some. My knees are stiff and aching especially in the mornings but once I get moving they improve slightly. I haven’t noticed a pattern of when they are worst during the cycle…..I am on Prostap. At times a find it hard to get out of a chair and as for a toilet seat? I find myself using the disabled toilets now when I am out.

People keep telling me it’s down to the lack of testosterone but I am not convinced that it’s not the drug itself and I can’t find any research on the subject. I too have put on weight (about 7kg) but have started to lose it again(2.5kg). I still exercise…walk, cycle, swim, gym, but TBH it doesn’t seem to make a difference. Every time I exercise I get aching hips, knees and ankles. Yesterday I did 33 miles on my ebike which I managed fine without any pain, but when I got home and started to rest everything seized up and my hips and knees were aching badly last night.
My GP gave me a full set of blood tests as He wanted to check me for polymyalgia Rheumatica, but they all came back clear.

So I’m no further forward in finding anything that helps, and I wouldn’t wish this therapy on my worst enemy😟 The only thing that keeps me going is the hope that it cures my PCa.

If you do find anything that helps please let EVERYONE know.

Good Luck, and if you fancy further discussion on it please PM me.

Derek

User

Posted 13 Feb 2024 at 18:49

Hi Lizzo37,

You have replied to several posts about this with the same answer . Do you mind me asking if you are medically qualified and if not where you got this information from.

Many thanks,

Derek

User

Posted 13 Feb 2024 at 22:12

Have you heard of the PATCH trials ? It's very well known in the medical world it was a trial testing estrogen patches (like what menopausal women take ) to see if estrogen patches can lower testosterone like ADT and yes they can without the debilitating side effects of ADT here is a link

https://www.mrcctu.ucl.ac.uk/studies/all-studies/p/patch-pr09/

Obvs there has been plenty of research into estrogen patches before they treated menopausal women with them

There are many other benefits for example there isnt a risk of dementia with estrogen patches but they are not making it available

This is a US doctor who is talking about using estrogen patches alongside ADT

https://www.google.com/search?client=ms-android-samsung&sca_esv=de3b8b35270c999b&sxsrf=ACQVn099nHaK78yaHSZNAEdfBIcy4EhvcQ:1707861894201&q=transdermal+estrogen+adt+prostate+cancer&tbm=vid&source=lnms&sa=X&ved=2ahUKEwjPsZ2sqamEAxVAREEAHaz2BaYQ0pQJegQICBAB&biw=360&bih=560&dpr=4#fpstate=ive&vld=cid:80ede9ad,vid:KBpg_SE0Odo,st:0

User

Posted 14 Feb 2024 at 02:21

Could somebody who has an appointment coming up with an Oncologist check where the NHS is with using these patches? I can't recall members saying they have been offered but perhaps restricted to trials.

Barry

User

Posted 14 Feb 2024 at 09:26

Originally Posted by: Online Community Member

https://www.mrcctu.ucl.ac.uk/studies/all-studies/p/patch-pr09/

Obvs there has been plenty of research into estrogen patches before they treated menopausal women with them

There are many other benefits for example there isnt a risk of dementia with estrogen patches but they are not making it available

This is a US doctor who is talking about using estrogen patches alongside ADT

Thanks Lizzo37, I will take my time and read through the study, it sounds interesting👍

User

Posted 14 Feb 2024 at 23:41

Second link Lizzo37 gave https://www.google.com/search?client=ms-android-samsung&sca_esv=de3b8b35270c999b&sxsrf=ACQVn099nHaK78yaHSZNAEdfBIcy4EhvcQ:1707861894201&q=transdermal+estrogen+adt+prostate+cancer&tbm=vid&source=lnms&sa=X&ved=2ahUKEwjPsZ2sqamEAxVAREEAHaz2BaYQ0pQJegQICBAB&biw=360&bih=560&dpr=4#fpstate=ive&vld=cid:80ede9ad,vid:KBpg_SE0Odo,st:0.

Thought I recognized the voice. It is one of a number of videos by a highly accredited Doctor whose laid back style made him popular with a number of members of this forum some years ago. His name is Charles "Snuffy" Myers. For anybody who is interested these are some of his other listed videos. https://www.prostatecancertoday.info/copy-of-videos

And here are his credentials, so a man of some standing https://grandroundsinurology.com/author/cmyers/

Edited by member 14 Feb 2024 at 23:43 | Reason: to highlight links

Barry

User

Posted 16 Feb 2024 at 21:33

I have to the bottle gripper to get the cork out my wife’s Prosecco bottles! Thank God the gin and whisky bottles only have a screw top or push in cork!

Is it the ADT? All I can say is that I never had any issues before I started on Prostap, now it’s a constant battle against aching and painful joints. I find it hard to believe that in your case it’s just coincidence. There have been numerous men on here complaining about bad joint ache recently.

I’ve not finished reading the PATCH study done by UCL as per the link posted by Lizzo37 but I am VERY concerned about the damage that I think is being done to my body by this treatment and am going to seek a referral to my Onco to discuss changing ADT drugs. I am also seriously thinking about paying for a private consultation for a second opinion on whether I really need to be on this drug for 3 years. The thought of being on and off it as you are really frightens me.

Derek

User

Posted 16 Feb 2024 at 21:44

Hi Derek,

You say '...The thought of being on and off it as you are really frightens me...' But lets put it into context, when I was first diagnosed back in 2007 Gleason 9, T2 or T3 and suspicious lymph nodes, the phrase 3 - 5 years was mentioned, I snatched at the straw of 60%-40% offered by RT, and here I am enjoying life 17 years later and ten of them have been free from HT. So I am not complaining, if the hands get much worse I will have to let my wife drive the car,

User

Posted 16 Feb 2024 at 22:26

Hi Dave,

Sorry I should have read your profile before commenting. I am very much at the beginning of my journey compared to you, and given your prognosis you have done incredibly well. I’ve had so many side effects, most of which I have been able to deal with, or learn to live with, but the continued deterioration of my hips and knee joints is what bothers me. I went swimming this morning and all was good, even enjoyed it, but tonight I have had to haul myself up the stairs to get into my bed. If it continues to deteriorate I really dont know where I’m going to be be in 16 months time when my HT finishes, which is why I’m searching for a solution, or at least something to stop it getting worse. Maybe I’m clutching at straws but I’m not giving up yet.

All the best for the future!

Derek

Edited by member 16 Feb 2024 at 22:27 | Reason: Not specified

User

Posted 16 Feb 2024 at 22:49

Originally Posted by: Online Community Member

Hi Derek,

You say '...The thought of being on and off it as you are really frightens me...' But lets put it into context, when I was first diagnosed back in 2007 Gleason 9, T2 or T3 and suspicious lymph nodes, the phrase 3 - 5 years was mentioned, I snatched at the straw of 60%-40% offered by RT, and here I am enjoying life 17 years later and ten of them have been free from HT. So I am not complaining, if the hands get much worse I will have to let my wife drive the car,

Fantastic Dave. That fills me with positivity.

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User

Posted 13 Feb 2024 at 01:05

Joint problems are one of the best known side effects of HT - what on earth is your GP thinking?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Feb 2024 at 07:23

Originally Posted by: Online Community Member

Joint problems are one of the best known side effects of HT - what on earth is your GP thinking?

She was more leaning towards me being overweight and this being the issue. Then again she dismissed my weight gain being part of the HT also. I am in a catch 22 I can’t exercise as much as I want too and keep active to stop the weight gain because of the stiff knees.

User

Posted 13 Feb 2024 at 07:44

Hi Gaffer,

So I’m no further forward in finding anything that helps, and I wouldn’t wish this therapy on my worst enemy😟 The only thing that keeps me going is the hope that it cures my PCa.

If you do find anything that helps please let EVERYONE know.

Good Luck, and if you fancy further discussion on it please PM me.

Derek

User

Posted 13 Feb 2024 at 18:49

Hi Lizzo37,

You have replied to several posts about this with the same answer . Do you mind me asking if you are medically qualified and if not where you got this information from.

Many thanks,

Derek

User

Posted 13 Feb 2024 at 19:26

Hi Derek

You also seem to reply to posts with the same reply which is how much you suffer from side effects of ADT - joint aches, insomnia etc ?

I am just being proactive, I have life experience plus I like to access research on the Internet - is that not allowed ?

User

Posted 13 Feb 2024 at 20:59

Hi Lizzo37,

Sorry if it came across this way but I wasn’t in any way criticising you - I am just desperate to find a solution not just for me, but for the many others who also suffer. I thought maybe you might be able give me some pointers to the evidence, perhaps some research that’s has been done on the subject. My own research seems to reveal a mixed picture with Estrogen being used historically, but also some evidence that combining it with ADT can help with some of the side effects. If it does work I can’t understand why it’s not offered as an alternative because it is considerably cheaper than the conventional ADT.

If I had some solid evidence I could take it to my Maggies Group for discussion with our Group Leader who was previously a Head CNS in Urology.

Thanks again,

Derek

User

Posted 13 Feb 2024 at 22:12

https://www.mrcctu.ucl.ac.uk/studies/all-studies/p/patch-pr09/

Obvs there has been plenty of research into estrogen patches before they treated menopausal women with them

There are many other benefits for example there isnt a risk of dementia with estrogen patches but they are not making it available

This is a US doctor who is talking about using estrogen patches alongside ADT

User

Posted 14 Feb 2024 at 02:21

Barry

User

Posted 14 Feb 2024 at 09:26

Originally Posted by: Online Community Member

https://www.mrcctu.ucl.ac.uk/studies/all-studies/p/patch-pr09/

Obvs there has been plenty of research into estrogen patches before they treated menopausal women with them

There are many other benefits for example there isnt a risk of dementia with estrogen patches but they are not making it available

This is a US doctor who is talking about using estrogen patches alongside ADT

Thanks Lizzo37, I will take my time and read through the study, it sounds interesting👍

User

Posted 14 Feb 2024 at 11:01

Originally Posted by: Online Community Member

We need to get a petition going then they will have to react if it reaches 100k

User

Posted 14 Feb 2024 at 20:19

DH’s dd was diagnosed with breast cancer a few years ago (they both have the brxa2 gene) She’s very into alternative therapies etc and uses them alongside her other treatments. She spoke to her therapist about dh’s prostate cancer return. He said it’s really important to block off dh’s oestrogen as it can do as much harm to prostate cancer as testosterone. So personally I would be worried about adding extra oestrogen. Interesting though.

Edited by member 14 Feb 2024 at 20:21 | Reason: Not specified

User

Posted 14 Feb 2024 at 23:41

And here are his credentials, so a man of some standing https://grandroundsinurology.com/author/cmyers/

Edited by member 14 Feb 2024 at 23:43 | Reason: to highlight links

Barry

User

Posted 15 Feb 2024 at 16:45

User

Posted 15 Feb 2024 at 19:54

Originally Posted by: Online Community Member

That all sounds familiar. It’s bad first thing in the morning, gets better as the day goes on, and then gets worse again in the evening. Last night I couldn’t get to sleep. I took an ibuprofen 400, but that didn’t seem to help, so then took 2 paracetamol and that made a difference.

we can only hope that after we have finished with the ADT the side effects will subside🙏

User

Posted 16 Feb 2024 at 20:35

Let me apologise in advance if I am going over old ground. I was first diagnosed with osteoarthritis a couple of years before my PCa diagnosis in 2007, so I just assumed it was all part of the fun of aging. I was on HT from 2007 - 2010 and then again from 2014-2015, but had been off it from 2016, without me really trying my physical fitness improved no end as my testosterone levels returned to normal. A year or so ago I found an old arthritic bottle opener/gripper thingy in the kitchen drawer and realised I hadn't used it for years. Now I have been back on HT for just a month and am suddenly using the bottle opener again as my hands and finger joints are giving me gyp. Something made me wonder if there was a question, hence I searched the site and found this thread, is it safe to assume that it is the Zoladex that is causing my hand pain?

User

Posted 16 Feb 2024 at 21:33

I have to the bottle gripper to get the cork out my wife’s Prosecco bottles! Thank God the gin and whisky bottles only have a screw top or push in cork!

Derek

User

Posted 16 Feb 2024 at 21:44

Hi Derek,

User

Posted 16 Feb 2024 at 22:26

Hi Dave,

All the best for the future!

Derek

Edited by member 16 Feb 2024 at 22:27 | Reason: Not specified

User

Posted 16 Feb 2024 at 22:49

Originally Posted by: Online Community Member

Fantastic Dave. That fills me with positivity.

User

Posted 18 Feb 2024 at 22:22

Originally Posted by: Online Community Member

Hi there is a caveat to estrogen therapy and it is that those with brac 1 & 2 genes shouldnt have it

User

Posted 22 Feb 2024 at 15:59

I have been suffering with painful hips, legs and knees for a few months. I am 17 months into Prostap + Abiraterone + Prednisolone + Zoledronic Acid. Had 37 fractions of RT in Jan/Feb 2023. I am very active; averaged over 17k steps a day last year, lots of walking, gym work, golf, cycling (e-bike when the weather is better). I've maintained my weight and am not overweight.

Despite all of that I have suffered muscle loss in my legs and on last visit my Oncologist has reduced my Prednisolone (and I have to monitor my blood pressure twice a day for 2 months). GP has been great. Tested a load of my bloods and ruled our Polymyalgia like another contributor on this thread. Sent me for a pelvic x-ray which has shown mild thinning of cartilage in one hip and marked in the other. Going to see a hip specialist next few days. My GP thinks the side effects of the cancer treatment has exacerbated what's happening in my hips and the referred issues elsewhere in my legs with my muscle weakness making things more painful.

I'm assuming my actual hip issues are as a result of general wear and tear of being 64 next week and having played a lot of sport over the years and nothing to do with RT and other treatments. I have found the addition of pretty consistent pain and aching in legs has made sleep even worse and fatigue more marked.

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