Zoladex side-effects

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User

Posted 06 Nov 2023 at 10:20

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 17:47

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 20:45

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 21:03

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 21:06 | Reason: Not specified

User

Posted 06 Nov 2023 at 21:46

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 23:44

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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