Joint Ache on HT

User

Posted 23 Jun 2023 at 22:07

Well, I’ve now been on Prostap3 for almost a year. My RT finished beginning of May and was a breeze compared to HT. Every joint in my body aches and is stiff….my neck, shoulders, elbows, lower back, hips and knees! In fact the only organ in my body that doesn’t get stiff very often is my penis(sorry but sometimes you’ve just got to make a joke, you can either laugh or cry!)…and even when it DOES get stiff(with a lot of help!) it aches like hell due to what I believe may be the start of Peyronie’s disease, making it impossible to do anything with it😟

it’s not because I’m sedatory either, I keep myself very active and busy to keep myself sane. Yesterday I cycled the 2 Forth Bridges(50 miles) on my ebike, came home and washed the car and did various other things including some bike maintenance, the day before that I Walked 15k steps and then cut the front hedge. I also do stretches daily, use resistance bands regularly and have started doing some basic Pilates exercises I found on YouTube. But when I get up from a chair I still feel like a 90 year old!

Those of us on HT have so much to deal with….hot flushes and night sweats, ED, joint ache, total loss of libido, anxiety. If we can get help with any of these it’s going to make QOL so much better. for me the joint ache is my biggest concern at the moment as I’ve got another 2 years of this treatment and if it deteriorates any further I’m going to be struggling. So has anyone found anything to help with joint ache that I’m not already doing?

Don’t get me wrong, I just get on with things as best I can and am still living life to the full but at times it does get you down😪

User

Posted 24 Jun 2023 at 07:34

I’m on HT forever now and agree with all your above points. It’s a bummer and I do all the exercise and weights and Pilates also. My legs are my biggest concern. Very very weak and sore. I’m dreading losing my mobility one day. But yes I would say just keep active but try and organise your week better. Sometimes I’m full of energy and get stacks done in one day , then feel awful for the next 2. I guess at least you have light at the end of the tunnel …… good luck

User

Posted 24 Jun 2023 at 07:57

I had two years off decapeptyl after 37 fractions off radiotherapy as I didn't want all the side effects of a prosectomy I also suffered with joint pain I found a hot bath with Epsom salts at night really helped with the aches worth a try gaz 👍

User

Posted 24 Jun 2023 at 13:04

HT does affect some much more than others and although I was not so badly affected as Decho, I wanted to adopt almost any form of treatment to get off it and have been fortunate to do so thus far. Unfortunately, for some there seems to be no effective alternative but I do wonder if it is really best that long term HT is the first go to treatment for almost everybody. Quite apart from what it can do mentally, it can severely restrict one physically, so one is inclined to do less and less. It can take quite an effort to continue to exert and push oneself to fight decline.

Barry

User

Posted 25 Jun 2023 at 19:56

Hi Decho it’s been a while

i am pretty sure I read on here that some thought there was little value in HT after 18 months? Clearly it depends on individual circumstances but I am hoping that this is the case

6 months on HT and I feel basically weak. I have always been quite a strong man, small but strong and just doing simple things like press-ups are near impossible now it is very disturbing as my diagnosis was 2 to 3 years! God knows what state I will be in by then?

I have updated my profile but basically I am 13 fractions done out of 20 and can’t wait to go home

User

Posted 25 Jun 2023 at 20:12

I'll just add that I got really weak, best way to put it, whilst on the 3 yr Zoladex plan, when on the floor with the grandchildren etc, really struggled to get up had to haul myself up using a chair/couch for support that sort of thing. I was always fairly fit/active and tried to keep as active as possible whilst on treatment. All good now, treatment finished summer 2018 and must say took a good while to recover but, as I've said earlier, no complaints. (Diagnosed 2015 aged 59 gleason 8 upped to 9 after turp, psa 21 slight spread to seminals, RT plus HT)

PETER

User

Posted 06 Dec 2023 at 09:51

Hi Decho

I’m a bit late onto this conversation but was just searching on muscle and joint ache - so thanks for posting- I hope things are not getting any worse for you.

I’m 15 months into ADT (Prostap and Abiraterone et al) and had 37 fractions of RT in Jan/Feb 2023.

I’m a fairly active 63 yr old - I average 16,000 steps a day, do a lot of walking, golf, work on our small farm etc. & having done exercises, weights, stretching, x trainer etc at home I’ve been doing 1 or 2 sessions in the gym with a great friend whose my PT for the last 6 weeks or so. I also ride an e bike and have found getting on hurts but I’m fine when on and riding.

BUT everything aches and hurts, especially my legs, knees and hips. The person who mentioned getting up from playing with a grandchild looking like a 90 year old resonates with me.

I get insomnia quite badly, which with hot flushes, and aching muscles and joints makes nights uncomfortable and rarely restful.

As with so much with this treatment I wonder whether the aching is just old age, old rugby injuries or the cancer treatment. I have definitely noticed muscle wastage despite a lot of effort.

I swim in the summer outside and that helps. The other thing that definitely helps is seeing a Shiatsu practitioner who I also have acupuncture with.

Good luck.

User

Posted 07 Dec 2023 at 11:04

Hi D Bear and Derek

I was on zoladex for only 6 months when the onco took me off it; no reason given other than he thought it was enough. This was after 20 sessions of RT.

Over a year later the joint and muscle aches and pains are still debilitating. I can walk down to the village which is about a mile there an back but that's about it. I am having physio withe the hope of getting back to (bad) golf again. I know what you mean about getting up from the floor.

Like you I feel abandoned after the treatment finished. 6 monthly psa tests OK, 0.025, 0.025, 0.094. Testosterone now up to 4.1. Maybe if it reaches normal levels I might feel better. The CNS nurse reassures me it will improve in time!

Just to add that I need to pee 4 or 5 times per night.

I suppose it's good to still be here a d to feel OK apart from the aches and pains. Inability to carry out some household tasks do tend to upset domestic harmony!

Let's all try to have a good Christmas and a happier new year.

Peternigel

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User

Posted 24 Jun 2023 at 07:34

User

Posted 24 Jun 2023 at 07:57

User

Posted 24 Jun 2023 at 10:28

Decho, we used to have a member (forum name was Old Al although he was only in his 50s) who ended up in a wheelchair, his mobility was so poor. Following a bit of PCUK research he took up swimming and found it helped enormously.

Also, don't assume that it is definitely caused by the HT. John has recently been diagnosed with a form of rheumatoid arthritis with similar symptoms

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

User

Posted 24 Jun 2023 at 10:55

Thanks all, another side effect is brain fog, I’ve just realised I posted on this matter a while ago!
Its much worse now though affecting many of my joints and the thought of it getting worse is worrying, so I will try anything to help. Funnily enough once I get my leg over,(about the only time I do that these days🤣🤣🤣) on my ebike I have no bother when I am out cycling and my legs are stronger than ever

Time to renew my local gym membership which includes swimming and see if that helps. I don’t normally have baths but will try that out with Epsom salts and put the jets on which may help even more.

as I say I will try everything and anything to help, I would love to get back skiing after this is over but right now if I fell over I doubt I would be able to get back up!

My wife has just asked a very interesting question which I couldn’t answer ‘’What causes the joint ache?”
Is it loss of muscle round the joints?

User

Posted 24 Jun 2023 at 13:04

Barry

User

Posted 24 Jun 2023 at 17:34

Hi just a line to say I've been on HT for nearly 4 years now, yes I've got brain fog, everything joint aches at various times. We have found a heat rub helps me get relief from the niggles hope this helps

User

Posted 24 Jun 2023 at 19:17

Yes I was on Zoladex for 3 yrs (including 2 yrs abiraterone & enzalutimide + prednisolone) and suffered with all the muscle/bone aches, hot flushes, fatigue, depression, weight gain, libido loss etc but, allowing for the actual depression element, it didnt get me too bothered as I appreciated the reason for it whilst hopefully being on the stuff for 'only' 3 yrs. It done its job for me, got over all the effects tho took a while. Knowing what I know now I'd do the same thing if appropriate.

Peter

User

Posted 25 Jun 2023 at 19:56

Hi Decho it’s been a while

i am pretty sure I read on here that some thought there was little value in HT after 18 months? Clearly it depends on individual circumstances but I am hoping that this is the case

I have updated my profile but basically I am 13 fractions done out of 20 and can’t wait to go home

User

Posted 25 Jun 2023 at 20:12

PETER

User

Posted 26 Jun 2023 at 00:02

Originally Posted by: Online Community Member

Hi Decho it’s been a while

i am pretty sure I read on here that some thought there was little value in HT after 18 months? Clearly it depends on individual circumstances but I am hoping that this is the case

I have updated my profile but basically I am 13 fractions done out of 20 and can’t wait to go home

Hi Nigel yes been a while, I didn’t realise you were in the middle of RT as I tend to only look at recent conversations and didn’t see your profile update. I can’t imagine how difficult it is for you being away from home during treatment, the support of family by your side makes this so much easier. I’m glad you’ve found just how good Maggies are though and good luck with the rest of your treatment. If it’s any encouragement to you I found RT a breeze and side effects cleared up very quickly after completion, and things in the urinary and bowel(not sure why bowel🤷🏼‍♂️) departments are better than they’ve been for a long while.

as I was on HT for 9 months before treatment started I am kind of hoping that they might reduce the time I need to spend on it after RT? maybe wishful thinking but will see what the Onco says on 23rd August.

I do have the odd bad day(today I was a total wreck physically and emotionally) but tomorrow is another day and I’ve got my ebike ride planned exploring Edinburgh to look forward to. Also going for a swim tomorrow to see if that helps. I’ve had a few malts with our friends tonight so feeling great now!

My aches got steadily worse after my last prostap injection…getting up from a chair is like ‘Oooooph!’ Next one is on 6th July so I’m hoping they don’t get worse after that. I certainly don’t have the strength I use to have, although I was never any good at press-ups! I’m determined that I’m going to do everything in my powers to keep going.

All the best and keep me posted.😊

Derek

User

Posted 26 Jun 2023 at 00:10

Peter,

Yes, that sounds just like me, fortunately my grandsons are at the age where they can pull me up🤣🤣
When we had our bathroom refitted last year the guy suggest we got a comfort WC which is higher up to sit on….so glad we went with this!

Its good to know to you’ve recovered even though it took some time…as long as there’s Hope then that’s enough to keep me going.

Take care,

Derek

User

Posted 27 Jun 2023 at 10:16

Hi Derek

About time I posted again even if to say not much has changed.

Over a year since I finished RT and almost a year since stopping HT. I hope for an improvement in the fatigue and and aches and pains. Had bloods done a few days ago but no results yet. Chat with onco or more likely CNS nurse 13th July. Let's hope for encouraging news, psa still down and testosterone up.

Will post again after onco chat.

I must be keeping the ibuprofen manufacturers busy but it does help!

How's yourself? Looks like we are fairly similar.

Peternigel

User

Posted 27 Jun 2023 at 16:05

Hi Peternigel

Went to my local swimming pool this morning…got in the pool but I could hardly move! I was really shocked as I use to be a good breaststroke swimmer. So I had a couple of lengths up and down and things got easier, then took myself into the slow lane where I paddled up and Down for 20 mins, then did some stretching in the deep end. I had a Maggies meeting so I didn’t have as long as I would have liked but I really enjoyed it, the pool was a lovely temperature, and I felt better after it. So going to keep at it in the hope it helps. Never thought about ibuprofen.

Other than that doing ok, hot flushes have got a bit worse and insomnia is quite a problem for me leaving me tire during the day at times.

Got a private consultation with a specialist at Spire Murrayfield on Thursday to discuss Peyronies disease…I decided not to hang abut waiting months on the NHS for an appointment at the ED clinic. I will post on my journey thread after that.

Hope your blood test goes ok and the Onco is forthcoming!

Derek

User

Posted 06 Dec 2023 at 09:51

Hi Decho

I’m a bit late onto this conversation but was just searching on muscle and joint ache - so thanks for posting- I hope things are not getting any worse for you.

I’m 15 months into ADT (Prostap and Abiraterone et al) and had 37 fractions of RT in Jan/Feb 2023.

BUT everything aches and hurts, especially my legs, knees and hips. The person who mentioned getting up from playing with a grandchild looking like a 90 year old resonates with me.

I get insomnia quite badly, which with hot flushes, and aching muscles and joints makes nights uncomfortable and rarely restful.

As with so much with this treatment I wonder whether the aching is just old age, old rugby injuries or the cancer treatment. I have definitely noticed muscle wastage despite a lot of effort.

I swim in the summer outside and that helps. The other thing that definitely helps is seeing a Shiatsu practitioner who I also have acupuncture with.

Good luck.

User

Posted 07 Dec 2023 at 10:22

Hi D Bear,

Everything you say resonates with me. I love the bit about the ebike. My ebike is my saviour, I can get in it and cycle for 50 miles no problem, but getting my leg over(in more ways than one!🤣🤣😊) is like Ooooph!😟

we have a place in Fuerteventura with e-bikes there as well and I was down on the floor fixing something on the wheel and I just could NOT get up. I had to bum my way into the hall(fortunately it’s tiled!), sit on the first step of the stairs and haul myself up using the banister…fortunately I saw the funny side of it and just burst out laughing, but on more than one occasion I’ve burst into tears😢 Oh the joys of Prostap!

I’m 18 months into ADT with another 18 to go, but the joint issues started about 8 months ago and got steadily worse. I think it’s getting slightly better now….I’ve started acupuncture again and also started taking Magnesium Glycinate as well.
I see you do a huge amount of exercise and still suffering, I would have thought that would help. I too am quite active but not to your extent and also find that it doesn’t really help much, although the cycling helps loosen my knees.
MY Onco suggested to me it might just be old age and I nearly swung for him. Before this disease(and COVID) struck we headed off to Colorado every year to ski, but the thought skiing now is furthest from my mind. it is my goal however to get back to it in some form(maybe one of these ski scooter thingies😂) to it once I’m finished with this ‘poison’

Yes insomnia is another issue although recently I’ve been a bit better, but before sometimes it could take me 4 hours to get to sleep. And then the flushes….I get into bed, lie for a while reading ro watching TV and am fine, but as soon as my head hits the pillow…BANG! Every single night! I know it’s coming because I get agitated just before the event. It doesn’t last long but does nothing to help me get to sleep. I’ve started taking a couple of paracetamol just before I get into bed and that seems to have helped. I bought a small table top fan with a step less motor which sits on my bedside table. It’s good because it’s stemless you can turn it right down and it’s very quiet and provide a very gentle breeze to my face.
Hot flushes during the day are annoying but I can deal with them and they are nothing like as bad as they use to be.

My friend from Maggies who is on the same path as me suffers extreme fatigue…he can’t even walk the dog.

One thing IS for sure, there is just NOT the support for those of us on HT. I feel abandoned since finishing RT, the attitude seems to be ‘Suck it up, it’s only for a limited time(3 years!) and it will ‘hopefully’ help cure your cancer’.

So, in Answer to your question, NO it’s not old age or an old injury, you’re young(relatively😉) and obviously very fit and active, so it’s either…
1. The drug itself. or
2. Lack of testosterone
I tend to lean towards the former.

but you can’t give up, you just have to keep going, doing nice things helps me from slipping into depression. Last night I booked a night away in Pitlochry on the 21st December, we’re going up to watch ‘Sunshine on Leith’(The Procalimers), having dinner and staying the night, a lovely breakfast, long walk and then a nice afternoon tea in Fischers Hotel to round off the trip..Really looking forward to it..I had my PSA test this morning and helps keep my mind of the result…which in Scotland I have to wait a week for😡

All the best to you and I hope you have a nice Christmas…and we MUST continue to compare notes!

Derek

User

Posted 07 Dec 2023 at 11:04

Hi D Bear and Derek

I was on zoladex for only 6 months when the onco took me off it; no reason given other than he thought it was enough. This was after 20 sessions of RT.

Just to add that I need to pee 4 or 5 times per night.

I suppose it's good to still be here a d to feel OK apart from the aches and pains. Inability to carry out some household tasks do tend to upset domestic harmony!

Let's all try to have a good Christmas and a happier new year.

Peternigel

User

Posted 11 Dec 2023 at 14:52

Thanks Decho for such a detailed and helpful reply. Good luck with it all.

User

Posted 11 Dec 2023 at 16:35

Originally Posted by: Online Community Member

Just to say that this sounds similar to John. He spent a fortune on an osteopath for a couple of years and then a physio before he was properly diagnosed with a form of rheumatoid arthritis. Don't assume your aches & pains are down to your previous HT - it would be unusual to be this badly affected so long after such a short course of treatment!

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

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