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Which ED medication?

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User
Posted 30 Mar 2022 at 20:08

Hi all, OH is 8 days post surgery and will start taladafil on Friday. Is there any guidance as to which ED drug is offered first and what is the criteria? 
Thanks

x

User
Posted 31 Mar 2022 at 17:52

Originally Posted by: Online Community Member

To be honest whilst on hormone therapy I have realized that my sex life is over until I finish in December I have a feeling that it will probably be a thing off the past anyway spoke to loads off pc sufferers at hospital  and most have come to the same conclusion 😬

 

Nooooo! Gaz, give yourself a fighting chance if you can. Play with it, try to get some enlargement even if not full erections, get a vacuum pump if you can. Don't assume it's fame over, an old friend on here (Topgun) refained sexual function after many years on HT and others here have also had success 

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

User
Posted 31 Mar 2022 at 22:06

Hi Gaz

I fully understand your feelings and thoughts about it being game over until you finish your hormone treatment.  I had 3 years of hormone treatment alongside radiotherapy so I speak from genuine experience.  If you have time, read my profile, it will give a good idea of what to expect.  Many folk on this support site will tell you: try to keep it working.  Be the naughty boy - think those thoughts but don't give up.  Time spent now on penile maintenance with be handsomely rewarded in times to come.  It will take quite some time for the hormone treatment side effects to wear off so be prepared to wait longer that when the treatment finishes.  I still get hot flushes some 20 months after I finished.  The great thing with hormone treatment and radiotherapy is that nothing gets cut and damaged by surgery.  It's all still there waiting for you to use it when you want to do so.  I had to physically push myself to think of anything sexual such was the strength of the hormone medication.  I did feel like a monk for ages. 

Give it a chance, you have nothing to lose and you will have fun trying too.  Don't give up.  Always happy to chat.....

User
Posted 01 Apr 2022 at 05:56

Thanks jeeper you have given me some hope thanks for that πŸ‘

User
Posted 07 Apr 2022 at 12:43

Jayne

I have found this article from Prostate cancer foundation in America and it answers your question hopefully. 

https://www.pcf.org/c/help-for-ed-after-prostate-surgery-the-basics/amp/

x 


Originally Posted by: Online Community Member
So hubby struggling on 5mg. CNS suggested leave for a week and restart on half dose. My question is how important is it to take these type of drugs in the big scheme of things for penile health? I’m looking at worst case scenario if he can’t tolerate at all? X

User
Posted 31 Mar 2022 at 11:01

Hi Jayne. 

I was given Cialis 5mg to take daily as soon as my catheter was taken out. I’m not sure in your area but I was told I could not start using a pump until week 12! 

Have a look at my other thread about pumps and the hoops I am having to jump through to get one so make sure you stick to your guns. 

 

User
Posted 31 Mar 2022 at 15:17

I also went for 5mg of tadalafil daily. But over the first several weeks best to think of it as more as a way to get the blood flowing rather than full on erections. I then used 50mg of viagra for "events" which I found worked well. But it takes a while for the nerves to sort themselves out so be prepared to be patient. Hope all goes well

User
Posted 31 Mar 2022 at 17:54

Originally Posted by: Online Community Member

To be honest whilst on hormone therapy I have realized that my sex life is over until I finish in December I have a feeling that it will probably be a thing off the past anyway spoke to loads off pc sufferers at hospital  and most have come to the same conclusion 😬

hang on in there Gaz! X

User
Posted 02 Apr 2022 at 22:34

Originally Posted by: Online Community Member
Thanks for this Andy, yes a low dose 5mg a day. I just wondered how they decide which drug to prescribe to who. The CNS was fantastic and explained today at this early stage it’s all about penile health and keeping the blood flowing πŸ‘

Tadalafil is the only one with any likelihood of being useful at this point. Some areas won't prescribe it and then hospitals swap Sildenafil instead. The evidence that Tadalafil is useful is rather weak, but the evidence for Sildenafil is non-existent, and because Sildenafil can't achieve close to continuous dosing, it's much less likely than Tadalafil to be of any use for this stage of healing.

User
Posted 05 Apr 2022 at 18:13

Jayne

Even though it is a side effect and not everyone gets it, I looked up on the leaflet and yes it is a side effect and I had it for a week or so but if OH is still getting pains in his legs, always get checked as well and drop a message to the consultant, they may be able to swap the pills if needed. 

Hope that helps? 


Originally Posted by: Online Community Member
Just a point to add to this thread for any newbies starting on tadalafill, muscle pain is a side effect (although not a common one). My hubby has been suffering for the last 24 hours with muscular pain in his thighs and calves.

User
Posted 05 Apr 2022 at 21:16
Tadalafil comes in a 2.5mg dose which is better tolerated than 5mg every other day. Some men can't cope with the leg aches and joint pain and are forced to stop - others find it gets better over time and others find it tolerable for the perceived benefit. The manufacturer leaflet may say it isn't a common side effect but based on posts here, it is common enough to be almost certain :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 30 Mar 2022 at 21:42

Excellent that you're being offered Tadalafil - that's probably the best thing at this point. What dose are you getting?

Even if you can't get erections with the Tadalafil yet, the Tadalafil will improve blood flow around the nerves which may help healing, and in the penis which helps prevent damage caused by not having erections.

Depending on what dose you get, and assuming you were nerve sparing, the Tadalafil might help to get erections too, but it's too soon to expect much yet. If you can't get erections at 8 weeks post surgery (which most people won't), then it's worth asking for a pump too.

If you want to try having sex with an erection before you can get an erection naturally or with Tadalafil, you might find you can use the pump, or you might ask for a vasodilator drug, which are mostly self-administered penile injections.

User
Posted 31 Mar 2022 at 11:01

Hi Jayne. 

I was given Cialis 5mg to take daily as soon as my catheter was taken out. I’m not sure in your area but I was told I could not start using a pump until week 12! 

Have a look at my other thread about pumps and the hoops I am having to jump through to get one so make sure you stick to your guns. 

 

User
Posted 31 Mar 2022 at 13:06

To be honest whilst on hormone therapy I have realized that my sex life is over until I finish in December I have a feeling that it will probably be a thing off the past anyway spoke to loads off pc sufferers at hospital  and most have come to the same conclusion 😬

User
Posted 31 Mar 2022 at 15:17

I also went for 5mg of tadalafil daily. But over the first several weeks best to think of it as more as a way to get the blood flowing rather than full on erections. I then used 50mg of viagra for "events" which I found worked well. But it takes a while for the nerves to sort themselves out so be prepared to be patient. Hope all goes well

User
Posted 31 Mar 2022 at 17:52

Originally Posted by: Online Community Member

To be honest whilst on hormone therapy I have realized that my sex life is over until I finish in December I have a feeling that it will probably be a thing off the past anyway spoke to loads off pc sufferers at hospital  and most have come to the same conclusion 😬

 

Nooooo! Gaz, give yourself a fighting chance if you can. Play with it, try to get some enlargement even if not full erections, get a vacuum pump if you can. Don't assume it's fame over, an old friend on here (Topgun) refained sexual function after many years on HT and others here have also had success 

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

User
Posted 31 Mar 2022 at 17:53

Originally Posted by: Online Community Member

Excellent that you're being offered Tadalafil - that's probably the best thing at this point. What dose are you getting?

Even if you can't get erections with the Tadalafil yet, the Tadalafil will improve blood flow around the nerves which may help healing, and in the penis which helps prevent damage caused by not having erections.

Depending on what dose you get, and assuming you were nerve sparing, the Tadalafil might help to get erections too, but it's too soon to expect much yet. If you can't get erections at 8 weeks post surgery (which most people won't), then it's worth asking for a pump too.

If you want to try having sex with an erection before you can get an erection naturally or with Tadalafil, you might find you can use the pump, or you might ask for a vasodilator drug, which are mostly self-administered penile injections.

Thanks for this Andy, yes a low dose 5mg a day. I just wondered how they decide which drug to prescribe to who. The CNS was fantastic and explained today at this early stage it’s all about penile health and keeping the blood flowing πŸ‘

User
Posted 31 Mar 2022 at 17:54

Originally Posted by: Online Community Member

To be honest whilst on hormone therapy I have realized that my sex life is over until I finish in December I have a feeling that it will probably be a thing off the past anyway spoke to loads off pc sufferers at hospital  and most have come to the same conclusion 😬

hang on in there Gaz! X

User
Posted 31 Mar 2022 at 17:56

Originally Posted by: Online Community Member

I also went for 5mg of tadalafil daily. But over the first several weeks best to think of it as more as a way to get the blood flowing rather than full on erections. I then used 50mg of viagra for "events" which I found worked well. But it takes a while for the nerves to sort themselves out so be prepared to be patient. Hope all goes well

thanks MikeW, to be honest last thing on our minds currently but want to ensure it’s kept healthy so this is a good start πŸ‘

User
Posted 31 Mar 2022 at 22:06

Hi Gaz

I fully understand your feelings and thoughts about it being game over until you finish your hormone treatment.  I had 3 years of hormone treatment alongside radiotherapy so I speak from genuine experience.  If you have time, read my profile, it will give a good idea of what to expect.  Many folk on this support site will tell you: try to keep it working.  Be the naughty boy - think those thoughts but don't give up.  Time spent now on penile maintenance with be handsomely rewarded in times to come.  It will take quite some time for the hormone treatment side effects to wear off so be prepared to wait longer that when the treatment finishes.  I still get hot flushes some 20 months after I finished.  The great thing with hormone treatment and radiotherapy is that nothing gets cut and damaged by surgery.  It's all still there waiting for you to use it when you want to do so.  I had to physically push myself to think of anything sexual such was the strength of the hormone medication.  I did feel like a monk for ages. 

Give it a chance, you have nothing to lose and you will have fun trying too.  Don't give up.  Always happy to chat.....

User
Posted 01 Apr 2022 at 05:56

Thanks jeeper you have given me some hope thanks for that πŸ‘

User
Posted 02 Apr 2022 at 22:34

Originally Posted by: Online Community Member
Thanks for this Andy, yes a low dose 5mg a day. I just wondered how they decide which drug to prescribe to who. The CNS was fantastic and explained today at this early stage it’s all about penile health and keeping the blood flowing πŸ‘

Tadalafil is the only one with any likelihood of being useful at this point. Some areas won't prescribe it and then hospitals swap Sildenafil instead. The evidence that Tadalafil is useful is rather weak, but the evidence for Sildenafil is non-existent, and because Sildenafil can't achieve close to continuous dosing, it's much less likely than Tadalafil to be of any use for this stage of healing.

User
Posted 05 Apr 2022 at 17:02
Just a point to add to this thread for any newbies starting on tadalafill, muscle pain is a side effect (although not a common one). My hubby has been suffering for the last 24 hours with muscular pain in his thighs and calves.
User
Posted 05 Apr 2022 at 18:13

Jayne

Even though it is a side effect and not everyone gets it, I looked up on the leaflet and yes it is a side effect and I had it for a week or so but if OH is still getting pains in his legs, always get checked as well and drop a message to the consultant, they may be able to swap the pills if needed. 

Hope that helps? 


Originally Posted by: Online Community Member
Just a point to add to this thread for any newbies starting on tadalafill, muscle pain is a side effect (although not a common one). My hubby has been suffering for the last 24 hours with muscular pain in his thighs and calves.

User
Posted 05 Apr 2022 at 19:02

Thanks Steve (as always). Yes checked with CNS so they are aware, if no improvement by Friday he will call back and maybe dose reduced to every other day. She was pretty sure it was his body getting used to a new drug 🀞

User
Posted 05 Apr 2022 at 21:16
Tadalafil comes in a 2.5mg dose which is better tolerated than 5mg every other day. Some men can't cope with the leg aches and joint pain and are forced to stop - others find it gets better over time and others find it tolerable for the perceived benefit. The manufacturer leaflet may say it isn't a common side effect but based on posts here, it is common enough to be almost certain :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Apr 2022 at 23:04

Originally Posted by: Online Community Member
Tadalafil comes in a 2.5mg dose which is better tolerated than 5mg every other day. Some men can't cope with the leg aches and joint pain and are forced to stop - others find it gets better over time and others find it tolerable for the perceived benefit. The manufacturer leaflet may say it isn't a common side effect but based on posts here, it is common enough to be almost certain :-(

 

Thanks Lyn, that’s really useful to know x

User
Posted 07 Apr 2022 at 11:05
So hubby struggling on 5mg. CNS suggested leave for a week and restart on half dose. My question is how important is it to take these type of drugs in the big scheme of things for penile health? I’m looking at worst case scenario if he can’t tolerate at all? X
User
Posted 07 Apr 2022 at 12:43

Jayne

I have found this article from Prostate cancer foundation in America and it answers your question hopefully. 

https://www.pcf.org/c/help-for-ed-after-prostate-surgery-the-basics/amp/

x 


Originally Posted by: Online Community Member
So hubby struggling on 5mg. CNS suggested leave for a week and restart on half dose. My question is how important is it to take these type of drugs in the big scheme of things for penile health? I’m looking at worst case scenario if he can’t tolerate at all? X

User
Posted 07 Apr 2022 at 21:16

Originally Posted by: Online Community Member

Hi Gaz

I fully understand your feelings and thoughts about it being game over until you finish your hormone treatment.  I had 3 years of hormone treatment alongside radiotherapy so I speak from genuine experience.  If you have time, read my profile, it will give a good idea of what to expect.  Many folk on this support site will tell you: try to keep it working.  Be the naughty boy - think those thoughts but don't give up.  Time spent now on penile maintenance with be handsomely rewarded in times to come.  It will take quite some time for the hormone treatment side effects to wear off so be prepared to wait longer that when the treatment finishes.  I still get hot flushes some 20 months after I finished.  The great thing with hormone treatment and radiotherapy is that nothing gets cut and damaged by surgery.  It's all still there waiting for you to use it when you want to do so.  I had to physically push myself to think of anything sexual such was the strength of the hormone medication.  I did feel like a monk for ages. 

Give it a chance, you have nothing to lose and you will have fun trying too.  Don't give up.  Always happy to chat.....

It may be off topic Jeeper but I had your private message but I'm not able to answer you because they tell me "To Protect our Members from spam, Newly Registered Members Aren't Allowed to Send Private messages. Private Messaging Will Become Available After You've Participated Participated More in Public Conversations. " So if you want to talk to me in private we can do it by email, just to write me your address in a private message and I will write to you

User
Posted 28 Apr 2022 at 22:08
Hubby restarted taladafill on half dose 7 days ago with no adverse effects, so that’s a relief. However, we don’t know yet if any nerves were sparred during surgery.
User
Posted 22 May 2022 at 08:57

I found tadalafil messed with my head a lot and had no discernible impact on my erections for at least six months. Probably for similar reasons to the pains some of you have reported. For this reason I switched to pump only for my rehab - satisfies the need to keep the tissues healthy, with the added bonus of no head or body aches - and the pleasure of having my old friend back to full size.

After about a year I tried the tadalafil again and it did help with erections - but at the same cost in woozy achy head, a lot like a hangover that lasted nearly a day at a time. Eventually realised that dynafil (generic Viagra) was worth trying because it wears off quicker. I found that 25 mg of dynafil works well for me - helps me with good strong erections and the headache/hangover only lasts 4 hours max.

User
Posted 21 Jul 2022 at 20:44
Im looking at surgery which wont spare nerves so no erections unless I have VED ( vacuum pump ) or something called ICI ( Penile injections _)

Any one had experience of either of these treatments post surgery ?

Any advice

Rod

Rod

User
Posted 21 Jul 2022 at 22:19

The pump should be used for penile rehab, but you have to wait for healing first, typically something like 8 weeks after catheter out but ask your surgeon.

Some people also use the pump for sex, but others find it unsatisfactory for that.

ICI (Intra Cavernosal Injections) are a standard method when nerves are not working. PDE5 inhibitors won't work, but it's probably worth trying 100mg Sildenafil just occasionally, as for a small percentage of men with no nerve sparing, it turns out they didn't remove all the nerves, or after about 3 years, they occasionally regrow.

Edited by member 22 Jul 2022 at 09:05  | Reason: Not specified

 
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