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Ibuprofen keeping me mobile

User
Posted 17 Mar 2024 at 15:10

After trying everything else with no success, the only thing keeping me mobile now is ibuprofen 400mg 3 times a day. I don’t like taking this because I know it can have a serious effect on your guts, but I’ve run out of options. I always take it with food. Without it my right hip is too painful to walk anything other than very short distances, and raising it towards my chin is virtually impossible. I’ve talked to PCUK specialist nurses via email because you can’t dial in from abroad, they can’t give medical advice and recommend contacting my CNS, which I will do tomorrow. Got a GP appointment on 1st April as well  when I get home but he didn’t think that joint ache was a known side effect of taking Prostap last time I spoke to him🤷🏼‍♂️. I am getting more concerned now that there is something more sinister going on, whatever it is I need to find out what.


I was just wondering if anyone else found that ibuprofen was the one thing that helped with there joint ache/pain?


Thanks,


Derek

User
Posted 17 Mar 2024 at 21:51

Hi Derek


After I had back surgery for some years ago the only thing that kept me mobile was ibuprofen and paracetamol alternately, both three time very 24 hours. My guts were hell to deal with until my wife suggested I take two/three apricots (hydrated) with ibuprofen which seemed to help. I also take Losartan to protect my stomach from acid attacks which cab be caused by ibuprofen. I hope you get sorted soon.

Edited by member 17 Mar 2024 at 21:52  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 18 Mar 2024 at 06:36
Hi Derek I was prescribed Celecoxib which is a type of ant inflammatory but way better. You take it twice a day. Like you my mobility is beginning to suffer quite badly but this is obviously helping. Good luck
User
Posted 18 Mar 2024 at 12:26
Hi Decho

I can't see in your BIO if you ever had PSMA PET scan? That may help put your mind at rest.

Re Ibuprofen and hip pain. My left hip went from fine to "completely fxxxxd" in the space of about 3 years, all of this was while I was being treated for PC so you can imagine what I was thinking. Anyway a hip replacement ultimately fixed it but not until the ibruprofen stopped working. This was actually a test suggested by the hip surgeon as being the correct decision point ie can't stand the pain anymore with ibruprofen means it's the right time for surgery.

BUT if you are taking ibruprofen regularly you MUST also take the stomach protecting tablet otherwise you risk serious gastric issues.
User
Posted 18 Mar 2024 at 12:44

Hi Francij1,


Thanks, That sounds just like me. I haven’t had a PSMA PET scan but it’s always at the back of my mind that there’s something there in my hip which wasn’t detected when I had my bone scan about 2 years ago. I’m not even 2 years on this journey so I’m very worried how I will be after 3 years. Am I correct I’m thinking that a PSMA scan won’t show anything up if you’re  on HT? I would happily pay privately if I thought it would put my mind at ease.


And yes, I am taking omeprazole to combat any gastric issues, which you can buy over the counter out here. I will check all this out with my GP on 1st April.


Gaz, thanks as well, I NEED to find out WHAT is going on and if possible WHY some men seem to stroll through this treatment with little trouble, yet others are virtually crippled by it. We’ve got an 80+year old on Prostap for life in our Maggies Group, has diabetes and is quite disabled, but has absolutely NO side effects at all.🤷🏼‍♂️


I really don’t know what I would do without the support of everyone on this forum and all my friends at Maggies.🙏


Derek

Edited by member 18 Mar 2024 at 12:44  | Reason: Not specified

User
Posted 18 Mar 2024 at 13:19

Decho, I would not be too worried about it being prostate cancer in your hip. My logic behind this is that your hip pain is increasing, but your PSA is not increasing, if they were related they would both increase together. I have made assumptions about your (former) cancer cells and made logical inferences, any of which could be wrong. The next question is 'do many people in their late 60s (happy belated birthday BTW) develop hip pain which isn't cancer related?' the answer is YES. So on the balance of probabilities, I would say with 99% certainty, you don't have prostate cancer in your hip. Clearly you have a hip problem which needs investigating, and a professional oncologist not a random guy on the internet should be making decisions about your cancer, but until you get a professional opinion hopefully my amatuer opinion will put your mind at rest.

Dave

User
Posted 19 Mar 2024 at 18:56

I spoke to my CNS this morning, they really ARE such a support. She confirmed that as my PSA was falling and low it was unlikely that this was causing my leg problems, more likely the HT making perhaps an existing problem worse. She said that my bone scan showed some wear on the knees, which I didn’t know about.


 


The outcome is she is going to speak to the Onco about me stopping HT early if my PSA stays low the next 2 tests, April and July. Perhaps April being my last Prostap Injection😊. This would mean that I have been on HT for 2 years in total, 9 months before RT and 15 months after RT finished. In the meantime they are going to try and find out exactly what the problem is with my legs.


 


I can ONLY live in Hope🤞🤞🤞🤞

User
Posted 19 Mar 2024 at 21:32
Decho, be reassured that taking ibuprofen is most likely not going to cause problems with your stomach or intestines.

The history is that ibuprofen was originally developed by the Boots company, who in those days were a proper pharmaceutical company not just a high street chemist. It was a point when paracetamol was being marketed as causing fewer side effects than aspirin, and Boots got their research chemists to look for a compound that worked in the same way as aspirin but without the effects on the stomach. When they came up with ibuprofen they applied for a licence to sell it with a maximum dose such that there were fewer side effects even than for paracetamol.

So unless you are personally sensitive for some reason, taking 3 x 400 mg ibuprofen should be fine. In fact ibuprofen isn't seriously toxic even if you take quite a lot more (though inevitably side effects will then be greater) and there are conditions for which doctors prescribe twice as much, admittedly under supervision. And apparently it is unnecessary to take it with food. In contrast taking double the recommended dose of paracetamol is likely to lead to liver toxicity problems.

However most doctors are unaware of this background, and apply the same cautions to ibuprofen use as they would to aspirin or other members of the same drug class which have far greater effects on the stomach.

As you have discovered, many people find ibuprofen particularly effective on musculoskeletal aches and pains. Obviously you want to get your specific problems checked out, but there is a good chance that if your hip pain responds so well to ibuprofen it is likely to be the sort of musculoskeletal problem all of us are liable to as we get older, and quite separate from your prostate cancer.
User
Posted 17 Mar 2024 at 15:10

After trying everything else with no success, the only thing keeping me mobile now is ibuprofen 400mg 3 times a day. I don’t like taking this because I know it can have a serious effect on your guts, but I’ve run out of options. I always take it with food. Without it my right hip is too painful to walk anything other than very short distances, and raising it towards my chin is virtually impossible. I’ve talked to PCUK specialist nurses via email because you can’t dial in from abroad, they can’t give medical advice and recommend contacting my CNS, which I will do tomorrow. Got a GP appointment on 1st April as well  when I get home but he didn’t think that joint ache was a known side effect of taking Prostap last time I spoke to him🤷🏼‍♂️. I am getting more concerned now that there is something more sinister going on, whatever it is I need to find out what.


I was just wondering if anyone else found that ibuprofen was the one thing that helped with there joint ache/pain?


Thanks,


Derek

User
Posted 17 Mar 2024 at 20:28

Can’t help you I’m afraid Derek, but replying to bump your post back up the list. Happy belated birthday by the way 👍

User
Posted 18 Mar 2024 at 08:31

Hi decho I hope you are enjoying your holiday despite your mobility problems I think you are right to get checked out I know hormone therapy is not great but you seem to be suffering more than the usual side effects I had the hot sweats and some slight pain but you seem to be suffering much more I spoke to our group who thought the same we have all been on hormone therapy and a couple on for life that thought your severe mobility issues need checking out for arthritis or something similar. Gaz 👍

Edited by member 18 Mar 2024 at 08:32  | Reason: Not specified

User
Posted 18 Mar 2024 at 18:18

Though I think cancer isn't the problem, I think prostap could be something to do with the problem. No one seems to have had quite such a bad problem as you on prostap, but prostap could be exacerbating some other hip problem.

Dave

User
Posted 18 Mar 2024 at 20:47

Decho re the PSMA scan I have read that it is and is not affected by HT which clearly doesn't make sense. A question for your ONCO or maybe Andy on here.!


The prostrap softens all your ligaments so probably just made things worse.


Pretty sure a regular bone scan would have found any lesion that was capable of causing pain. In fact it was my Onco who told me my hip was arthritic because he ordered an x-ray and bone scan the same time (Pre PSMA days) when I complained about it.


If I did lot of walking I would get a pain like tooth ache radiating down my leg, just before the hip op it had got so bad I couldn't walk far and always had a stick. Now
I can run again and walk for miles.

Edited by member 18 Mar 2024 at 20:49  | Reason: Not specified

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User
Posted 17 Mar 2024 at 20:28

Can’t help you I’m afraid Derek, but replying to bump your post back up the list. Happy belated birthday by the way 👍

User
Posted 17 Mar 2024 at 21:51

Hi Derek


After I had back surgery for some years ago the only thing that kept me mobile was ibuprofen and paracetamol alternately, both three time very 24 hours. My guts were hell to deal with until my wife suggested I take two/three apricots (hydrated) with ibuprofen which seemed to help. I also take Losartan to protect my stomach from acid attacks which cab be caused by ibuprofen. I hope you get sorted soon.

Edited by member 17 Mar 2024 at 21:52  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 18 Mar 2024 at 06:36
Hi Derek I was prescribed Celecoxib which is a type of ant inflammatory but way better. You take it twice a day. Like you my mobility is beginning to suffer quite badly but this is obviously helping. Good luck
User
Posted 18 Mar 2024 at 08:31

Hi decho I hope you are enjoying your holiday despite your mobility problems I think you are right to get checked out I know hormone therapy is not great but you seem to be suffering more than the usual side effects I had the hot sweats and some slight pain but you seem to be suffering much more I spoke to our group who thought the same we have all been on hormone therapy and a couple on for life that thought your severe mobility issues need checking out for arthritis or something similar. Gaz 👍

Edited by member 18 Mar 2024 at 08:32  | Reason: Not specified

User
Posted 18 Mar 2024 at 12:26
Hi Decho

I can't see in your BIO if you ever had PSMA PET scan? That may help put your mind at rest.

Re Ibuprofen and hip pain. My left hip went from fine to "completely fxxxxd" in the space of about 3 years, all of this was while I was being treated for PC so you can imagine what I was thinking. Anyway a hip replacement ultimately fixed it but not until the ibruprofen stopped working. This was actually a test suggested by the hip surgeon as being the correct decision point ie can't stand the pain anymore with ibruprofen means it's the right time for surgery.

BUT if you are taking ibruprofen regularly you MUST also take the stomach protecting tablet otherwise you risk serious gastric issues.
User
Posted 18 Mar 2024 at 12:44

Hi Francij1,


Thanks, That sounds just like me. I haven’t had a PSMA PET scan but it’s always at the back of my mind that there’s something there in my hip which wasn’t detected when I had my bone scan about 2 years ago. I’m not even 2 years on this journey so I’m very worried how I will be after 3 years. Am I correct I’m thinking that a PSMA scan won’t show anything up if you’re  on HT? I would happily pay privately if I thought it would put my mind at ease.


And yes, I am taking omeprazole to combat any gastric issues, which you can buy over the counter out here. I will check all this out with my GP on 1st April.


Gaz, thanks as well, I NEED to find out WHAT is going on and if possible WHY some men seem to stroll through this treatment with little trouble, yet others are virtually crippled by it. We’ve got an 80+year old on Prostap for life in our Maggies Group, has diabetes and is quite disabled, but has absolutely NO side effects at all.🤷🏼‍♂️


I really don’t know what I would do without the support of everyone on this forum and all my friends at Maggies.🙏


Derek

Edited by member 18 Mar 2024 at 12:44  | Reason: Not specified

User
Posted 18 Mar 2024 at 13:19

Decho, I would not be too worried about it being prostate cancer in your hip. My logic behind this is that your hip pain is increasing, but your PSA is not increasing, if they were related they would both increase together. I have made assumptions about your (former) cancer cells and made logical inferences, any of which could be wrong. The next question is 'do many people in their late 60s (happy belated birthday BTW) develop hip pain which isn't cancer related?' the answer is YES. So on the balance of probabilities, I would say with 99% certainty, you don't have prostate cancer in your hip. Clearly you have a hip problem which needs investigating, and a professional oncologist not a random guy on the internet should be making decisions about your cancer, but until you get a professional opinion hopefully my amatuer opinion will put your mind at rest.

Dave

User
Posted 18 Mar 2024 at 16:53

Originally Posted by: Online Community Member


Decho, I would not be too worried about it being prostate cancer in your hip. My logic behind this is that your hip pain is increasing, but your PSA is not increasing, if they were related they would both increase together. I have made assumptions about your (former) cancer cells and made logical inferences, any of which could be wrong. The next question is 'do many people in their late 60s (happy belated birthday BTW) develop hip pain which isn't cancer related?' the answer is YES. So on the balance of probabilities, I would say with 99% certainty, you don't have prostate cancer in your hip. Clearly you have a hip problem which needs investigating, and a professional oncologist not a random guy on the internet should be making decisions about your cancer, but until you get a professional opinion hopefully my amatuer opinion will put your mind at rest.



Thanks Dave, I AM probably overthinking this but it’s easy to do when you have this disease. I think what bothers me is the rapid deterioration in my hip since starting on Prostap. I never had any issues before this…just like Franci. I’ve just been out for a 20mile ebike ride across some hilly terrain and no problem, but I know if I went out for a 30 minute walk it would be very sore.


Derek

User
Posted 18 Mar 2024 at 18:18

Though I think cancer isn't the problem, I think prostap could be something to do with the problem. No one seems to have had quite such a bad problem as you on prostap, but prostap could be exacerbating some other hip problem.

Dave

User
Posted 18 Mar 2024 at 20:47

Decho re the PSMA scan I have read that it is and is not affected by HT which clearly doesn't make sense. A question for your ONCO or maybe Andy on here.!


The prostrap softens all your ligaments so probably just made things worse.


Pretty sure a regular bone scan would have found any lesion that was capable of causing pain. In fact it was my Onco who told me my hip was arthritic because he ordered an x-ray and bone scan the same time (Pre PSMA days) when I complained about it.


If I did lot of walking I would get a pain like tooth ache radiating down my leg, just before the hip op it had got so bad I couldn't walk far and always had a stick. Now
I can run again and walk for miles.

Edited by member 18 Mar 2024 at 20:49  | Reason: Not specified

User
Posted 19 Mar 2024 at 18:56

I spoke to my CNS this morning, they really ARE such a support. She confirmed that as my PSA was falling and low it was unlikely that this was causing my leg problems, more likely the HT making perhaps an existing problem worse. She said that my bone scan showed some wear on the knees, which I didn’t know about.


 


The outcome is she is going to speak to the Onco about me stopping HT early if my PSA stays low the next 2 tests, April and July. Perhaps April being my last Prostap Injection😊. This would mean that I have been on HT for 2 years in total, 9 months before RT and 15 months after RT finished. In the meantime they are going to try and find out exactly what the problem is with my legs.


 


I can ONLY live in Hope🤞🤞🤞🤞

User
Posted 19 Mar 2024 at 21:32
Decho, be reassured that taking ibuprofen is most likely not going to cause problems with your stomach or intestines.

The history is that ibuprofen was originally developed by the Boots company, who in those days were a proper pharmaceutical company not just a high street chemist. It was a point when paracetamol was being marketed as causing fewer side effects than aspirin, and Boots got their research chemists to look for a compound that worked in the same way as aspirin but without the effects on the stomach. When they came up with ibuprofen they applied for a licence to sell it with a maximum dose such that there were fewer side effects even than for paracetamol.

So unless you are personally sensitive for some reason, taking 3 x 400 mg ibuprofen should be fine. In fact ibuprofen isn't seriously toxic even if you take quite a lot more (though inevitably side effects will then be greater) and there are conditions for which doctors prescribe twice as much, admittedly under supervision. And apparently it is unnecessary to take it with food. In contrast taking double the recommended dose of paracetamol is likely to lead to liver toxicity problems.

However most doctors are unaware of this background, and apply the same cautions to ibuprofen use as they would to aspirin or other members of the same drug class which have far greater effects on the stomach.

As you have discovered, many people find ibuprofen particularly effective on musculoskeletal aches and pains. Obviously you want to get your specific problems checked out, but there is a good chance that if your hip pain responds so well to ibuprofen it is likely to be the sort of musculoskeletal problem all of us are liable to as we get older, and quite separate from your prostate cancer.
 
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