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How soon to start daily Tadalafil?

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User
Posted 18 Dec 2021 at 22:38

Hi all

My OH just had RARP 10 days ago. Just wondered how soon he should be thinking about taking daily 5mg Tadalafil? The hospital has told us they'll discuss with us at next appointment in 4 weeks time, but wasn't sure if he should be asking for a prescription sooner so he can start straight away. Any advice?

 

User
Posted 20 Dec 2021 at 07:47

I started on Tadalafil (daily 5mg) 8 weeks from op. My consultant and his nurse at the Marsden were very good on the ED front. My RP was extensive (I was a T3B) with significant lost of nerves (circa 65 to 70%). It’s now 3 years 3 mths since surgery.

I now have full penetrative sex and orgasim with my partner. I am 64.

So it takes time to repair the damage but I am alive and all psa’s undetectable. Trust the process.

It was 12mths before I had any stirrings. Along with Tadalafil I constantly worked at getting erections. My nurse was always saying ‘if you don’t use it you’ll loose it’. Btw I tried a pump but for me it wasn’t pleasant but many men are very keen on it with positive results. 

And finally don’t forget your partner in your journey - I learnt new tricks along the way and now I feel free of this dreaded disease.

btw - I’ll never forget the men still struggling with this b****** disease.

User
Posted 18 Dec 2021 at 23:11
I would wait until the appointment. It is risky to take something that impacts significantly on blood flow so soon after surgery without the surgeon's agreement.

You will also want clarification of things like your local CCG position - in some areas, you can only get a daily dose tadalafil prescription from the surgeon or an ED nurse, in other areas the GP can prescribe it and in too many areas it is only available on private prescription. Also find out whether a vacuum device is going to be prescribed.

Have you applied for his prescription exemption certificate?

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

User
Posted 19 Dec 2021 at 01:38
Taken as a daily dose of 2.5mg or 5mg, it helps the nerve bundles to repair post-op - which hopefully increases the chance of recovering erectile function. The 2.5mg / 5mg dose is also used for enlarged prostate. For some men, the 5mg daily dose is enough to be able to get erections on demand (but not usually in the first few months after the RP) while others will have the 10mg or 20mg dose just for events in the same way that you use sildenafil.

Until fairly recently, almost all CCGs approved daily dose tadalafil post-RP but now there are many areas where approval has been withdrawn and men really have to fight to get it prescribed. The prescribing guidelines are supposed to be:

2.5mg / 5mg tadalafil daily for BPH or as a prophylactic post-RP OR

4 x 20mg tadalafil per month OR

4 x 50mg (or 25mg / 100mg) sildenafil per month to have sex (although NICE has recently said that men can have it daily if they can convince their GP that they need to have sex every day, many CCGs are still not allowing this) OR

4 x 10mg / 20mg levitra per month OR

4 x caverject / muse / invicorp per month

I find it shocking that, having had cancer and cancer treatment that leaves him unable to get an erection, a man is rationed by NICE to an attempt at sex once per week. I think it is absolutely scandalous that some CCGs and individual GPs can then decide to not even prescribe the minimum.

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

User
Posted 19 Dec 2021 at 07:49

Following my 6 week post op review yesterday, I have been prescribed a three month supply of Tadalifil: one 20mg tablet to be taken twice a week. The primary purpose is to aid healing.

Peter

User
Posted 19 Dec 2021 at 10:14

Originally Posted by: Online Community Member

Thanks Lyn. Really useful. Will maybe wait till the post op appointment then. We just want to throw everything at it post op to give him the best chance of recovery. Does anyone happen to know which dose seems best? I was under the impression that a small daily dose would be better than a dose twice a week. I want to make sure my OH has access to the drugs he needs for successful rehabilitation so if that means a fight then that’s what I’ll do! Just good to know what the best option drug-wise might be and dosage, frequency  etc so we know exactly what to ask for! Or is there no difference in effects between daily low dose and twice a week dose? 

The prophylactic dose is daily. Some ED nurses start at 2.5mg and raise to 5mg after a few months, others start at 5mg and only use the 2.5mg for men who can't bear the side effects. 

There is no research to support the idea that a tablet twice a week has the same impact. Obvs the side effects are also rather more pronounced. 

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

User
Posted 19 Dec 2021 at 10:22

I waited until first post surgery histology review of 4 weeks. Worked out well and the Prof said it’s a good time to start that side of the recovery process. Always ping it past your consultant for specific advice relevant to you case 🙂

From a dose perspective I found 2.5mg per day worked well as minimised any reactions to that class of meds plus smooths out the peaks and troughs while in your system. This approach was very much supported by my consultant. It was prescribed but I bought it online privately from a known trusted UK registered online chemist. 

Edited by member 19 Dec 2021 at 10:26  | Reason: Not specified

User
Posted 19 Dec 2021 at 16:59

Personally I would be paying more attention to other things at 10 days post op. Everyone is different I agree but my preference would be recovering the Op rather than fighting against possible side effects. I would wait till the 1st consultation post op before even considering ED ( or even Incontinence ) issues.

User
Posted 20 Dec 2021 at 11:23
Great post John
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2021 at 13:33

Sildenifil is the generic form of Viagra. Does a similar job to Tadalifil (Cialis) but has a much shorter period of effectiveness. Hence I'm surprised it has been prescribed twice weekly. Actually, I'm surprised it has been prescribed at all (is it supposed to fight the infection, or to increase blood flow for healing) but if they don't know about Tadalifil there must be some serious holes in their knowledge.

Edited by member 22 Dec 2021 at 14:39  | Reason: Not specified

User
Posted 22 Dec 2021 at 18:52
There is zero research to suggest that Sildenafil helps with nerve repair.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2021 at 19:16

I underwent  RALP surgery  at Addenbrookes on 21/12 and was told to take a 5mg daily tablet of Tadalfil from 01/01/22- the day after my catheter is removed. It was stressed upon me that I should not take the tablet until my catheter was removed (for obvious reasons!)

User
Posted 09 Jan 2022 at 10:36
I think that is for large / event dose tadalafil. NICE has withdrawn approval of daily tadalafil for post-op nerve repair on the basis that there is 'no evidence it works' - that's why it is becoming so hard to get.

Your added complication (or saviour) will be that your GP can ignore the ED nurse because they are not in the same CCG. This is what happens in York - men travel to Leeds for RP, RT, etc and may be recommended / prescribed all sorts of things but when Leeds writes to the GP saying "please prescribe xxx' or 'please arrange follow up xxx' the York GPs don't have to comply.

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

User
Posted 09 Jan 2022 at 13:34

Post op at 4 week histology review the prof prescribed 2.5mg daily tadalafil. Worked well but I just secured it online via a uk registered pharmacy recommended by a few patients on here and local support group. They could only supply in 5mg pill form factor so just snap them in half.

User
Posted 09 Jan 2022 at 15:33
Very definitely. It might be very painful otherwise.
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User
Posted 18 Dec 2021 at 23:11
I would wait until the appointment. It is risky to take something that impacts significantly on blood flow so soon after surgery without the surgeon's agreement.

You will also want clarification of things like your local CCG position - in some areas, you can only get a daily dose tadalafil prescription from the surgeon or an ED nurse, in other areas the GP can prescribe it and in too many areas it is only available on private prescription. Also find out whether a vacuum device is going to be prescribed.

Have you applied for his prescription exemption certificate?

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

User
Posted 19 Dec 2021 at 00:31
I was taking Tadalafil for years before my RARP (due to enlarged prostate), but not taken a single tablet since. What's it supposed to do?
User
Posted 19 Dec 2021 at 01:38
Taken as a daily dose of 2.5mg or 5mg, it helps the nerve bundles to repair post-op - which hopefully increases the chance of recovering erectile function. The 2.5mg / 5mg dose is also used for enlarged prostate. For some men, the 5mg daily dose is enough to be able to get erections on demand (but not usually in the first few months after the RP) while others will have the 10mg or 20mg dose just for events in the same way that you use sildenafil.

Until fairly recently, almost all CCGs approved daily dose tadalafil post-RP but now there are many areas where approval has been withdrawn and men really have to fight to get it prescribed. The prescribing guidelines are supposed to be:

2.5mg / 5mg tadalafil daily for BPH or as a prophylactic post-RP OR

4 x 20mg tadalafil per month OR

4 x 50mg (or 25mg / 100mg) sildenafil per month to have sex (although NICE has recently said that men can have it daily if they can convince their GP that they need to have sex every day, many CCGs are still not allowing this) OR

4 x 10mg / 20mg levitra per month OR

4 x caverject / muse / invicorp per month

I find it shocking that, having had cancer and cancer treatment that leaves him unable to get an erection, a man is rationed by NICE to an attempt at sex once per week. I think it is absolutely scandalous that some CCGs and individual GPs can then decide to not even prescribe the minimum.

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

User
Posted 19 Dec 2021 at 07:49

Following my 6 week post op review yesterday, I have been prescribed a three month supply of Tadalifil: one 20mg tablet to be taken twice a week. The primary purpose is to aid healing.

Peter

User
Posted 19 Dec 2021 at 08:36

Thanks Lyn. Really useful. Will maybe wait till the post op appointment then. We just want to throw everything at it post op to give him the best chance of recovery. Does anyone happen to know which dose seems best? I was under the impression that a small daily dose would be better than a dose twice a week. I want to make sure my OH has access to the drugs he needs for successful rehabilitation so if that means a fight then that’s what I’ll do! Just good to know what the best option drug-wise might be and dosage, frequency  etc so we know exactly what to ask for! Or is there no difference in effects between daily low dose and twice a week dose? 

User
Posted 19 Dec 2021 at 10:08

Originally Posted by: Online Community Member

Following my 6 week post op review yesterday, I have been prescribed a three month supply of Tadalifil: one 20mg tablet to be taken twice a week. The primary purpose is to aid healing.

Peter

If you can, get a pill cutter from the chemist and cut the tablets in half - 10mg every 2 days is more useful.

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

User
Posted 19 Dec 2021 at 10:14

Originally Posted by: Online Community Member

Thanks Lyn. Really useful. Will maybe wait till the post op appointment then. We just want to throw everything at it post op to give him the best chance of recovery. Does anyone happen to know which dose seems best? I was under the impression that a small daily dose would be better than a dose twice a week. I want to make sure my OH has access to the drugs he needs for successful rehabilitation so if that means a fight then that’s what I’ll do! Just good to know what the best option drug-wise might be and dosage, frequency  etc so we know exactly what to ask for! Or is there no difference in effects between daily low dose and twice a week dose? 

The prophylactic dose is daily. Some ED nurses start at 2.5mg and raise to 5mg after a few months, others start at 5mg and only use the 2.5mg for men who can't bear the side effects. 

There is no research to support the idea that a tablet twice a week has the same impact. Obvs the side effects are also rather more pronounced. 

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

User
Posted 19 Dec 2021 at 10:22

I waited until first post surgery histology review of 4 weeks. Worked out well and the Prof said it’s a good time to start that side of the recovery process. Always ping it past your consultant for specific advice relevant to you case 🙂

From a dose perspective I found 2.5mg per day worked well as minimised any reactions to that class of meds plus smooths out the peaks and troughs while in your system. This approach was very much supported by my consultant. It was prescribed but I bought it online privately from a known trusted UK registered online chemist. 

Edited by member 19 Dec 2021 at 10:26  | Reason: Not specified

User
Posted 19 Dec 2021 at 15:07

I get the logic, Lyn. That's 5mg less per week but an evenly spaced dose. My daughter is a pharm. dispenser. Perhaps she will bring me a cutter.

Thanks

User
Posted 19 Dec 2021 at 16:59

Personally I would be paying more attention to other things at 10 days post op. Everyone is different I agree but my preference would be recovering the Op rather than fighting against possible side effects. I would wait till the 1st consultation post op before even considering ED ( or even Incontinence ) issues.

User
Posted 19 Dec 2021 at 18:19

Thanks. We haven’t felt particularly supported or informed throughout this whole process so feel like we need to double check everything so nothing gets missed. Good to know we don’t have to rush into getting on the Tadalafil

User
Posted 19 Dec 2021 at 18:48

Depends on form factor but the generics I have I can break in my fingers cleanly as there is a groove in the middle.

User
Posted 20 Dec 2021 at 07:47

I started on Tadalafil (daily 5mg) 8 weeks from op. My consultant and his nurse at the Marsden were very good on the ED front. My RP was extensive (I was a T3B) with significant lost of nerves (circa 65 to 70%). It’s now 3 years 3 mths since surgery.

I now have full penetrative sex and orgasim with my partner. I am 64.

So it takes time to repair the damage but I am alive and all psa’s undetectable. Trust the process.

It was 12mths before I had any stirrings. Along with Tadalafil I constantly worked at getting erections. My nurse was always saying ‘if you don’t use it you’ll loose it’. Btw I tried a pump but for me it wasn’t pleasant but many men are very keen on it with positive results. 

And finally don’t forget your partner in your journey - I learnt new tricks along the way and now I feel free of this dreaded disease.

btw - I’ll never forget the men still struggling with this b****** disease.

User
Posted 20 Dec 2021 at 11:23
Great post John
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Dec 2021 at 14:44

Originally Posted by: Online Community Member
Have you applied for his prescription exemption certificate?

????  

 

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

User
Posted 20 Dec 2021 at 15:46

Yes Lynn. That’s all sorted

User
Posted 22 Dec 2021 at 12:54
Specialist nurse just rang. We thought it was nice of her to check up on us. But no, she was just ringing to say the tests my OH had a week ago show a urine infection. 🙄

She said they were prescribing him sildenafil twice weekly. Should be getting prescription in around 10 days.

Anyone have any experience of this drug and twice weekly dosage?

I asked her about daily Tadalafil and she said she didn't know. Just that the twice weekly Sildenafil was standard for them.

She doesn't really seem to have a clue about anything.

Any advice?

User
Posted 22 Dec 2021 at 13:33

Sildenifil is the generic form of Viagra. Does a similar job to Tadalifil (Cialis) but has a much shorter period of effectiveness. Hence I'm surprised it has been prescribed twice weekly. Actually, I'm surprised it has been prescribed at all (is it supposed to fight the infection, or to increase blood flow for healing) but if they don't know about Tadalifil there must be some serious holes in their knowledge.

Edited by member 22 Dec 2021 at 14:39  | Reason: Not specified

User
Posted 22 Dec 2021 at 18:52
There is zero research to suggest that Sildenafil helps with nerve repair.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2021 at 19:16

I underwent  RALP surgery  at Addenbrookes on 21/12 and was told to take a 5mg daily tablet of Tadalfil from 01/01/22- the day after my catheter is removed. It was stressed upon me that I should not take the tablet until my catheter was removed (for obvious reasons!)

User
Posted 22 Dec 2021 at 19:21

Thanks Lyn. I’m going to chase this up then…

User
Posted 22 Dec 2021 at 20:12
If your CCG policy is to prescribe sildenafil instead if tadalafil, you will be unlikely to change their mind.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2022 at 10:17
Peter, TechGuy, OhDear! Would you might letting me know what CCG you are under? If you've recently been prescribed daily Tadalafil by your GP it would just be good to know what area/CCG you are in. We've made the request with our GP and are awaiting his response. But if he says no, then I'd like to be able to tell him that this drug is being prescribed on the NHS by other CCGs. He is a really kind and understanding man but I don't think he's aware of daily Tadalafil being on the NHS "red list". If I can put together a convincing argument on why he should prescribe, then maybe he will.

Otherwise, I guess we're looking at getting a private prescription and buying online.

User
Posted 08 Jan 2022 at 10:29

Robot A

 

I had my surgery at Addenbrookes in Cambridge and live  7 miles from the hospital in Cambridgeshire. My hospital and where I live is covered by  NHS Cambridgeshire & Peterborough CCG.

For what it is worth, since taking Tadalafil (my 6th day) my deflated cock does appear longer than it was after my catheter was removed and though it is not getting hard it does seem more firm.

 

Ivan

User
Posted 08 Jan 2022 at 11:14

Thanks Ivan really useful. Appreciate you getting back and sharing your experience. So helpful when we’re going through it ourselves 

User
Posted 08 Jan 2022 at 12:13
You are rushing ahead and possibly creating more problems than you need. Why not just wait for the post-op appointment as advised and find out then what happens next.

In our area, the urologist satisfies himself that surgical recovery js going okay and refers the man to andrology / ED nurse. Andrology prescribe whatever ED treatments are appropriate and then writes to GP asking the GP to take over responsibility for repeat prescriptions once the patient and ED nurse are happy that things are working.

In some areas, where there isn't an andrology clinic or where andrology service is not avaliable to men who went private, the urologist writes to the GP to tell the GP what to prescribe.

There are parts of the country where it all falls on the GP but even then, the GP usually needs confirmation from the surgeon that it is okay to go ahead.

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

User
Posted 08 Jan 2022 at 12:35
The ED clinic has already told us they will be prescribing twice weekly Sildenafil. But as you know Lyn the evidence isn't there to show that it encourages blood flow/nerve repair to that area. That's why my OH wants on the daily 5mg Tadalafil. Some urologists recommend that ED medication is started as soon after the op as possible or as soon as catheter comes out. We know how long it takes to get anything done so that's why we are starting to get the ball rolling to get daily Tadalafil. Will first try NHS, then privately. If some men in the UK are still being prescribed it daily, then this is a good argument to present to our GP, along with the clinical trials and evidence.

We're just trying to be as prepared as possible for something we know is going to be an issue in the coming weeks.

User
Posted 08 Jan 2022 at 13:45
I thought it was just the CNS that told you it would be 2 x sildenafil? Do you know whether there is an andrology clinic or ED specialist in your area?

Daily cialis is prescribed in Leeds but I think the approved normal starting point in Leeds is 2.5mg with an increase to 5mg later if needed.

The best way to get the evidence is by googling the various CCGs and reading the guidelines they publish for prescribers in their area. For example, if you google 'Basildon & Brentwood CCG 5mg cialis' it takes you to the letter dated 2019 stating that 2.5mg / 5mg cialis can only be prescribed to men with diabetes, RP-induced ED, etc. Google the same for West Essex and the document states that daily cialis is no longer allowed. Lancs guidance states that daily cialis can only be prescribed by a sexual health service and not by primary care, but it is approved for men post RP if they are under a specialist sexual health service.

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

User
Posted 08 Jan 2022 at 17:49

Hi Lyn. Sorry CNS? Can you remind me? Got acronyms coming out of my ears! OH's oncological nurse told him he has been referred to the ED clinic at The Christie and will be seen in the next week or so and that they would prescribe him twice weekly Sildenafil as that is the standard and routine thing they prescribe for all men at the clinic. Not sure if there is ED specialist in our area but there's definitely one at The Christie where my OH has been referred to and that's the one he'll be under the care of in the coming months. As you know our Trust has been deemed "inadequate" with a recent damning investigation and report specifically into the urology dept. It does mean we straddle two CCGs though so it may work in our favour, especially if one or the other CCGS allows the prescription of daily Tadalafil. Will do some Googling of CGGs and try and find out. Thanks again Lyn for your help. You're a bloody legend! X

 

 

User
Posted 09 Jan 2022 at 09:58
Well... I did some research and found the NHS document: "Items which should not routinely be prescribed in primary care: Guidance for CCGs Version 2, June 2019" It states that "Tadalafil can be prescribed for erectile dysfunction in circumstances as set out in part XVIIIB of the Drug Tariff.

Part XVIIIB of the Drug Tariff list Drugs, Medicines and Other Substances that may be ordered only in certain circumstances and it states that Tadalafil may be ordered in the circumstances where "a man who has had the following surgery - prostatectomy radical pelvic surgery renal failure treated by transplant."

So it looks like there may be a good argument for prescribing, unless of course the rules have changed since June 2019

User
Posted 09 Jan 2022 at 10:36
I think that is for large / event dose tadalafil. NICE has withdrawn approval of daily tadalafil for post-op nerve repair on the basis that there is 'no evidence it works' - that's why it is becoming so hard to get.

Your added complication (or saviour) will be that your GP can ignore the ED nurse because they are not in the same CCG. This is what happens in York - men travel to Leeds for RP, RT, etc and may be recommended / prescribed all sorts of things but when Leeds writes to the GP saying "please prescribe xxx' or 'please arrange follow up xxx' the York GPs don't have to comply.

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

User
Posted 09 Jan 2022 at 11:41

I’ll keep you posted! Wish me luck! 🤣

User
Posted 09 Jan 2022 at 13:34

Post op at 4 week histology review the prof prescribed 2.5mg daily tadalafil. Worked well but I just secured it online via a uk registered pharmacy recommended by a few patients on here and local support group. They could only supply in 5mg pill form factor so just snap them in half.

User
Posted 09 Jan 2022 at 14:30

Thanks TechGuy. Appreciate it. Can you advise or PM me what website you used? 

User
Posted 09 Jan 2022 at 15:32

Not sure whether this has been mentioned previously…but…should we wait until catheter removed before taking any ED medication? 

User
Posted 09 Jan 2022 at 15:33
Very definitely. It might be very painful otherwise.
User
Posted 09 Jan 2022 at 15:36

Originally Posted by: Online Community Member
Very definitely. It might be very painful otherwise.

Thank you Peter 

User
Posted 31 Jan 2022 at 22:07

Just thought I'd leave this here as an update..
My OH managed to get daily 5mg Tadalafil on prescription from his GP, along with a vacuum pump.
It wasn't easy getting the Tadalafil but we got there in the end! It is currently black listed in our Trust.
So i's worth fighting if daily Tadalafil is what you think is the right option for you.

User
Posted 07 Feb 2022 at 07:40

Hi

Have tried to message you but it says your inbox is full

 

MikeW

User
Posted 07 Feb 2022 at 07:46

and I think from about week 10 I was taking 5mg tadalfil daily and over the counter 50mg sildefil for events. Consultant seemed fine with this

User
Posted 07 Feb 2022 at 08:31

Apologies Mike! Have emptied it now! Thanks for getting back

User
Posted 07 Feb 2022 at 09:12

Still doesn't work but I'm sure Ive read on here that there are ongoing mailbox issues

 
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