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Zoladex side-effects

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User
Posted 16 Jan 2017 at 10:07

The day after my second Zoladex hormone implant on 22 May 2015 I developed a sharp pain in my left wrist and more general pain in the left arm. By the afternoon of the following day (24 May) I could not bear it any longer and went to the local NHS walk-in centre and I was diagnosed with carpel tunnel syndrome. I searched on the Internet and found that this side effect had been reported a few times in the USA, but not apparently in the UK. My doctor, however, changed the diagnosis to a trapped nerve in my shoulder. I was not convinced by this! I went online and asked the NHS if anyone had reported similar side-effects. After several reminders, more than 12 months later I was told that no such side effects had been reported. I am not convinced that they even bothered to check. Following my latest Zoladex hormone implant on 30 December 2016, the day after I developed stiffness and pain in my left knee. As I suffer from arthritis I thought perhaps that this had flared up in my left knee, but as the days passed I realised that this was running the usual course of an arthritis inflammation and wondered if this too was a side-effect of the Zoladex hormone implant.When I checked online I found that at least one other person in the UK had the same experience, in 2015. Does anyone know whether these are the only two incidents of this side effect in the UK?

I am puzzled as to why I should such side effects on only two occasions out of eight, and wonder whether the NHS supplies of Zoladex are sourced from this country alone or whether they are sourced from different countries. I intend to ask my doctor to follow this up but would be glad to hear from anyone with any information on this.

User
Posted 16 Jan 2017 at 19:38

Hi HEL,

I think the thing to bear in mind with Zoladex, is not the actual drug itself, it's side effects are minimal, compared with the intended effects that hormone therapy has on your body.

What all of these hormone therapies have in common is that they stop your body making testosterone, and testosterone is that all important hormone that made a man of you!

Your body started making testosterone when puberty kicked in, it was testosterone that made your beard grow, your muscles grow and your wedding tackle grow, without testosterone you will revert to having the body of a 60 year old boy.  

When I was on Zoladex and later on Prostrap, my beard still grew enough to just about justify shaving in the morning, however I didn't really need another shave in the evening to get rid of the 5 o'clock shadow.  More noticeable was the way the hairs diminished on the rest of my body.  But those are just the externally noticeable effects.  Hormone therapy causes the bones to thin, as old men without testosterone we are just like old women and prone to osteoporosis, and our muscles will grow smaller and loose their strength, so none of this will help arthritic joints.

What can we do about it?

Personally I persuaded my GP to put me on a junior aspirin every day, there is some evidence it fights cancer, it thins the blood leading to better circulation and it is a bit anti-inflammatory.

Another trick, is to pig out on a high dose of Ibuprofen.  Apparently you need to take Ibuprofen for about 3 days before it has an anti-inflammatory effect, and you mustn't take it too long either, its a sort of Goldilocks thing, not too little and not too much.  You need to get the strongest tablets from behind the chemists counter and take them for a week, take whatever the back of the packet recommends as the maximum daily dose, every day for a week, then stop to let your body recover, repeat every 2 to 3 months.

Finally, there is apparently some chemical found in apple skin that combats muscle loss in the elderly, so an apple a day, but don't peal it.

:)

Dave   

Edited by member 16 Jan 2017 at 19:45  | Reason: Not specified

User
Posted 04 Oct 2023 at 10:27

Hi Robin,

My locally advanced PC has been treated with chemo, radiation, and, since my initial diagnosis, with 12-weekly Zoladex implants. The chemo and radiation were completed last year and I have been on Zoladex for nearly two years now with another year and a bit to go. As well as the usual side effects after about one year I developed joint stiffness in my feet, legs, and especially my hands. This came on quite suddenly everywhere all at once. I have been receiving treatment from a rheumatologist who diagnosed tenosynovitis. Steroid injections have eased the stiffness in my hands but I still suffer pain. I was advised to use max-strength ibuprofen gel which has helped a little with the pain. I am convinced Zoladex is the culprit of my joint problems.

I would be most interested to learn if your joint problems improve now that your Zoladex course has finished.

Best wishes and good luck.

User
Posted 05 Oct 2023 at 08:43

Hi Jules,

I experienced peripheral neuropathy in my feet at the beginning of my treatment with chemo. This gradually improved after my chemo ended but 18 months later I still have some residual numbness in my toes. As my team is aiming for a curative outcome it seems a small price to pay.

I am heartened to read that your Zoladex side effects disappeared after the treatment ended. I take that as some light at the end of my particular tunnel. Thanks for sharing.

User
Posted 06 Nov 2023 at 19:45

Originally Posted by: Online Community Member
yes there are a lots of horrible side effects of from the Zoladex mafia : back pain, joint pain, arthritic-like pain, dizziness, severe tinnitus, neuropathy etc etc. The doctors and nurses are wonderful but they never tell you about the side effects.

Too true! My GP went into denial when I suggested that peripheral neuropathy might have been related to Zoladex. I do wish there was more awareness in the medical community about the side effects of these drugs but I suspect that Big Pharma isn't in a hurry to put together a comprehensive study that could spoil the image of their drugs.

If/when you can get off this stuff you'll notice a big improvement in all sorts of things that you might not have even connected to Z [or similar].

Fingers crossed for your scan results Otto. At the worst, some of these current trials are yielding very good results in prolonging life beyond the short periods that would once have been expected.

Hang in there Derek! It would be helpful if our medical advice was clear on side effects so that a) we couldn't be accused of making it up [my GP] and b) we'd have something to look forward to when the problems clear.

Jules

User
Posted 06 Nov 2023 at 22:44

Originally Posted by: Online Community Member
I’ve always been interested in which side effects are caused by the drug itself rather than the lack of testosterone.

I think only the injection site issues are caused by the drug itself. Everything else is due to lack of Testosterone.

There are a small number of people for whom one of the drugs doesn't work too well, and switching fixes that.

Show Most Thanked Posts
User
Posted 16 Jan 2017 at 18:58

Can't help with your query Hel but bumping in case somebody else can

We can't control the winds - but we can adjust our sails
User
Posted 16 Jan 2017 at 19:38

Hi HEL,

I think the thing to bear in mind with Zoladex, is not the actual drug itself, it's side effects are minimal, compared with the intended effects that hormone therapy has on your body.

What all of these hormone therapies have in common is that they stop your body making testosterone, and testosterone is that all important hormone that made a man of you!

Your body started making testosterone when puberty kicked in, it was testosterone that made your beard grow, your muscles grow and your wedding tackle grow, without testosterone you will revert to having the body of a 60 year old boy.  

When I was on Zoladex and later on Prostrap, my beard still grew enough to just about justify shaving in the morning, however I didn't really need another shave in the evening to get rid of the 5 o'clock shadow.  More noticeable was the way the hairs diminished on the rest of my body.  But those are just the externally noticeable effects.  Hormone therapy causes the bones to thin, as old men without testosterone we are just like old women and prone to osteoporosis, and our muscles will grow smaller and loose their strength, so none of this will help arthritic joints.

What can we do about it?

Personally I persuaded my GP to put me on a junior aspirin every day, there is some evidence it fights cancer, it thins the blood leading to better circulation and it is a bit anti-inflammatory.

Another trick, is to pig out on a high dose of Ibuprofen.  Apparently you need to take Ibuprofen for about 3 days before it has an anti-inflammatory effect, and you mustn't take it too long either, its a sort of Goldilocks thing, not too little and not too much.  You need to get the strongest tablets from behind the chemists counter and take them for a week, take whatever the back of the packet recommends as the maximum daily dose, every day for a week, then stop to let your body recover, repeat every 2 to 3 months.

Finally, there is apparently some chemical found in apple skin that combats muscle loss in the elderly, so an apple a day, but don't peal it.

:)

Dave   

Edited by member 16 Jan 2017 at 19:45  | Reason: Not specified

User
Posted 17 Jan 2017 at 10:08

I'm puzzled why you are so convinced that the Zoladex is to blame; it ain't necessarily so.

User
Posted 20 Jan 2017 at 11:33

I appreciate your well-meaning responses. I am not totally convinced that Zoladex is responsible. Just highly suspicious. That is why I am trying to find out whether other people have similar experiences and their prevalence. I am aware of the efficacy of the treatment and its side effects. In fact I experience these on a daily basis, as I suspect many others do. These two reactions though were painful and debilitating and if Zoladex is responsible it needs to be brought to people's attention. Many thanks again for taking the time to respond to my post.

User
Posted 25 Jan 2017 at 13:59

I seem to have developed arthritis in my right thumb and first finger since my second implant.

May be coincidence, may not. Never had it before though.

User
Posted 25 Jan 2017 at 16:53

My doctor usefully supplied the date of administration. name of the supplier, batch number and website address https://yellowcard.mhra.gov.uk (tel: 0808 100 3352) for reporting suspected side effects. Not able to supply location of manufacturer though. I intend to write to AstraZeneca UK, who produce Goserelin Acetate under the brand name Zoladex LA, and to report my suspicions at the above web address.

User
Posted 25 Jan 2017 at 18:27

The only time I needed physio was whilst on Zoladex. Upper Arm tendon shortening was deemed to be the problem. My understanding is Astra give tendon shortening and displacement as a side effect. Tendon issues also arise in arthritis?

Ray

User
Posted 26 Jan 2017 at 11:11

http://www.ehealthme.com/ds/zoladex/arthritis/

User
Posted 26 Jan 2017 at 21:08

hi,i am suffering from osteoarthritis of my hips after been on zoladex for 2yrs 4 mths.

User
Posted 27 Jan 2017 at 01:55

My OH Suffers from painful Achilles also has arthritis in knees which has got worse mainly due to muscle wastage
Debby

User
Posted 11 Mar 2023 at 13:01

Hi I’m about to have my 3rd 3 monthly zoladex jab in a weeks time and have started to see over the last couple of month very numb hands when I wake in the morning, to a point now where my hands feel numb, 30 seconds after lying on my side in bed, numb hands and shooting pains in my fingers all day long. I’ve not been diagnosed with CTS yet, but it feels highly likely it’s the case. 

User
Posted 06 Apr 2023 at 13:46

Hi, I see your entry was a few years ago. I was diagnosed with prostate cancer about 4/5 years ago. I chose to have a prostatectomy. Initially all was fine but then my PSA levels started to slowly rise again over the next couple of years. Its complicated as I also suffer from Parkinson's Disease and my oncologist advised against radio therapy as there was a good chance it would leave me doubly incontinent. So we opted for hormone treatment and I was prescribed Zoladex, an implant every 12 weeks. From the start of taking this, I started to have pain and numbness in both my hands. As I have Parkinson's I was having physiotherapy and complained about the pain in my hands, numbness, pins and needles, so I was sent to have electro conductive tests which confirmed Carpal Tunnel Syndrome. I'm now awaiting surgery for it but I'm adamant that it started at the same time I was given Zoladex.

Looking up causes of CTS, I find hormonal changes can cause it. In particular, for women, the menopause. When I started on Zoladex, my oncologist said that I would have similar side effects as a woman going through the menopause. I feel certain my resulting CTS is a result of the Zoladex.

I've now finished my Zoladex implant and its the wait and see time for several months. It'll be interesting to note what happens with CTS.

User
Posted 04 Oct 2023 at 10:27

Hi Robin,

My locally advanced PC has been treated with chemo, radiation, and, since my initial diagnosis, with 12-weekly Zoladex implants. The chemo and radiation were completed last year and I have been on Zoladex for nearly two years now with another year and a bit to go. As well as the usual side effects after about one year I developed joint stiffness in my feet, legs, and especially my hands. This came on quite suddenly everywhere all at once. I have been receiving treatment from a rheumatologist who diagnosed tenosynovitis. Steroid injections have eased the stiffness in my hands but I still suffer pain. I was advised to use max-strength ibuprofen gel which has helped a little with the pain. I am convinced Zoladex is the culprit of my joint problems.

I would be most interested to learn if your joint problems improve now that your Zoladex course has finished.

Best wishes and good luck.

User
Posted 04 Oct 2023 at 19:31
I was on Zoladex for 3 yrs, treatment ended summer 2018. I had all of the side effects mentioned including the stiff/sore joints mentioned, very sore at times despite trying to keep moving etc. It did take a while as suggested but for me, they are just a memory now, no such issues.

Although it was hard going at times with the RT and HT I remain thankful it seems to have done what it was supposed to (RT/HT was my only option upon diagnosis PSA 21 T3b N0M0 only slight spread to seminals gleason 8 up to 9 after TURP).

PETER

User
Posted 04 Oct 2023 at 23:47

Originally Posted by: Online Community Member
I would be most interested to learn if your joint problems improve now that your Zoladex course has finished.

In the 2 years I was on Z I didn't have joint pain though I did get various issues that weren't explained beforehand. Nerve twitching and some leg pain were disturbing.

In relation to the OP here, I had some serious nerve issues after a Zoladex overdose [story elsewhere on the forum] which manifested as severe leg pain and some numbness in my feet, as in peripheral neuropathy. My GP told me I was mistaken, which p****d me off considerably but the symptoms reduced when my Zoladex dosage returned to normal. While Zoladex isn't chemo, I've read that nerve problems, particularly in the legs, can be a side effect of some chemo.. I'm confident that Z can have similar effects, if minor, but it's not well recognized.

What I did find, was that within a month of stopping Z those symptoms and some others disappeared. Obviously testosterone doesn't come back for some period of time [about nine months for me] and even when it does there's still some body adjustments to be made but Z itself has side effects and while some problems might require your hormones to return in order to fix them, others don't.

Jules

Edited by member 05 Oct 2023 at 00:03  | Reason: Not specified

User
Posted 05 Oct 2023 at 08:34

Peter, I am pleased that the side effects from the Zoladex have disappeared. I am finding my treatment tough at present but I am hoping for the same outcome after January 2025 when mine is due to end. I am doubly pleased for you that Zoladex did what it was supposed to do.

User
Posted 05 Oct 2023 at 08:43

Hi Jules,

I experienced peripheral neuropathy in my feet at the beginning of my treatment with chemo. This gradually improved after my chemo ended but 18 months later I still have some residual numbness in my toes. As my team is aiming for a curative outcome it seems a small price to pay.

I am heartened to read that your Zoladex side effects disappeared after the treatment ended. I take that as some light at the end of my particular tunnel. Thanks for sharing.

User
Posted 05 Oct 2023 at 22:04

Yes H, it might well improve for you. My family has something of a genetic predisposition to peripheral neuropathy so I was worried Z might have triggered something permanent but apart from an occasional nerve twitch in my legs at night, there's no signs of any unhappy nerves now,

Jules

User
Posted 08 Oct 2023 at 11:08
From what my oncologist said with the start of treatment more than two years ago I imagined that zoladex was for life. I don't know if the side effects are from that or enzalutamide (that was reduced from 160 mg to 120 mg a day) due to fatigue.
User
Posted 06 Nov 2023 at 09:20

I’ve always been interested in which side effects are caused by the drug itself rather than the lack of testosterone. I’m on Prostap3 and I wouldn’t wish it on my worst enemy…I’ve had just about ALL the side effects with the exception of fatigue. By the far the worst in joint ache stiffness, especially the knees. When I get up out a chair a feel like a 90 year old.  The joint problems started after about 9 months and are quite debilitating. I’m doing everything I can to combat them, walking, cycling, gym and swimming….I may try the intensive course of Ibubrofen to see if that helps and am going to see my acupuncturist when I get back from holiday to see if he can do anything.

Interesting to hear too about Carpal Tunnel Syndrome because I have developed Peyronie’s disease. When I went to see a specialist about it I was lying there with my bits exposed and he asked to examine my hands. I thought ‘Does he not know where my Willy is?’🤣🤣🤣🤣 anyway turns out Carpal Tunnel Syndrome is also associated with Peyronie’s disease.

My reason for interest in this is that the thought of being on Prostap3 for life I find quite scary, and would consider having an orchidectomy if that was the case. However, if it’s the lack of testosterone that’s causing the side effects then it’s probably not the right thing to do. So I just keep my fingers crossed that after 3 years of this poison I will be free from this disease….for a while anyway🤞🤞🤞

User
Posted 06 Nov 2023 at 16:47

Hi Robin and all

I am waiting for my results from the scan on Saturday to see if I have gone from 3c to 4. Results next week. I am pretty scared. But hey, I have told my partner I have hidden reserves. We will find out. 

Meanwhile I can make comments about Zoladex and now Prostap, which I have been on for 6 years or so. The fatigue is a real life changer. For me I am human in the morning but after about 3 pm I turn into a kind of zombie. But (i) this is quite regular and it is possible adapt to it (ii) you can take advantage of the insomnia and simply get up early (iii) avoid evening social life (very hard for me because I am a double zombie after 6 pm); I go to  bed by 9pm.  

And, yes there are a lots of horrible side effects of from the Zoladex mafia : back pain, joint pain, arthritic-like pain, dizziness, severe tinnitus, neuropathy etc etc. The doctors and nurses are wonderful but they never tell you about the side effects. My advice is try to be brave about these side effects and concentrate on managing the FATIGUE, for which there are no pills. If you are depressed, then I am telling you seriously it's NOT YOU its the drug. 

And now I may have to take some fancy chemo ON TOP of  the Zoladex mafia drug. I may have to change my views about the pain-fatigue balance.

Cheers to all,

Otto

 

 

 

 

User
Posted 06 Nov 2023 at 19:45

Originally Posted by: Online Community Member
yes there are a lots of horrible side effects of from the Zoladex mafia : back pain, joint pain, arthritic-like pain, dizziness, severe tinnitus, neuropathy etc etc. The doctors and nurses are wonderful but they never tell you about the side effects.

Too true! My GP went into denial when I suggested that peripheral neuropathy might have been related to Zoladex. I do wish there was more awareness in the medical community about the side effects of these drugs but I suspect that Big Pharma isn't in a hurry to put together a comprehensive study that could spoil the image of their drugs.

If/when you can get off this stuff you'll notice a big improvement in all sorts of things that you might not have even connected to Z [or similar].

Fingers crossed for your scan results Otto. At the worst, some of these current trials are yielding very good results in prolonging life beyond the short periods that would once have been expected.

Hang in there Derek! It would be helpful if our medical advice was clear on side effects so that a) we couldn't be accused of making it up [my GP] and b) we'd have something to look forward to when the problems clear.

Jules

User
Posted 06 Nov 2023 at 20:03

Hi Jules,

I just wish there was more support for those of us going through this HT. I know and understand this is going to help me rid myself of this disease, but I feel we are just left on our own to deal with the side effects which can seriously affect QOL. I am so proactive in Improving my QOL and if I find any useful solutions I will keep everyone posted.

If it weren’t fo this forum and Maggies I really don’t know how I would cope!

Derek

Edited by member 06 Nov 2023 at 20:06  | Reason: Not specified

User
Posted 06 Nov 2023 at 20:46
Dereek,

I've noticed the way you're taking on this challenge and hats off to you, I reckon you're doing a great job.

Jules

User
Posted 06 Nov 2023 at 22:44

Originally Posted by: Online Community Member
I’ve always been interested in which side effects are caused by the drug itself rather than the lack of testosterone.

I think only the injection site issues are caused by the drug itself. Everything else is due to lack of Testosterone.

There are a small number of people for whom one of the drugs doesn't work too well, and switching fixes that.

 
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