GP support

User

Posted 25 Jul 2019 at 08:44

Hi all,

First time posting on the forums so bear with me and feel free tell me if I skip any vital information or break any taboos.

I had RALP on 1st April (great date eh!) following diagnosis in January and since then had ‘all clear’ from post operative biopsy and PSA undetectable so all good.

Continence is returning and not there yet but see good progress and had good support from the hospital physio.

But I don’t feel I had much support from the urology on ED. In the build up to op I had advice, and in plenty of PCUK leaflets as well, that good practice is to start out on 5mg Tadalafil and then ‘if that doesn’t help we have lots of other options’

When I had my surgical/urology follow up the consultant said he was going to issue weekly viagra - I challenged this and he then issued the 5mg Tadalafil. Unfortunately when I’ve gone to get repeats from my GO surgery they have refused and said their guidelines are to only issue a 20mg event pill In all the reading I have done it seems that the initial 5mg daily is as much about penile health and yet I feel my GP sees it only as specifically ED treatment .

Ive asked the Urology nurses for help and whilst saying they will try so far all they can do is send the consultant letter with initial issuing of the 5mg.

They have made me an appointment regarding a Pump and I gather from that I may get a prescription for one.

I have two questions

Does anyone have any advice regarding convincing the GP to continue the daily dose Tadalafil? And any supporting documentation?

And having had this experience already will I also need to get my GO to support the Pump prescription or is it likely they hospital can issue the prescription I can take directly to a pharmacy?

Phew and

Many thanks in advance

Edited by member 25 Jul 2019 at 14:14 | Reason: Not specified

User

Posted 25 Jul 2019 at 11:44

Welcome to the forum.

My GPs just do anything the urology department ask. I was given daily sildenafil for about two years, it was me who stopped asking for it. If your GP is quoting NICE guide lines the pump should not be a problem as I think it is covered in the document. CJ fought hard to get the medication he wanted, no doubt he will be along soon with some advice.

PS it my case the hospital gave me me the documents that you then take to the GP. Took about two weeks.

Thanks Chris

Edited by member 25 Jul 2019 at 11:47 | Reason: Not specified

User

Posted 25 Jul 2019 at 13:01

Some CCGs (Clinical Commissioning Groups) won't pay for the low dose Tadalafil - it's about £25/month.

If you can get the event dose of Tadalafil (Cialis), you could break that into 4 and spread it out over time, to give you the low dose equivalent. That might be just as hard to get from the GP for same reason - cost.

Unfortunately, Sildenafil (generic Viagra) is not going to be as effective when used as a low dose, because it doesn't last long in the body. Tadalafil lasts 36 hours so with daily dosing, it's there continuously, versus Sildenafil which is only lasts 4 hours.

When you have your ED clinic appointment, get them to say you need to be on 5mg Tadalafil too in their letter back to the GP. If the ED clinic appointment is going to take a while, buy yourself a vacuum pump in the mean time - you don't want to leave it too long without having erections.

User

Posted 25 Jul 2019 at 14:04

As Andy says, unfortunately some CCG's e.g. mine, Buckinghamshire, won't pay for low dose Tadalafil, and a pump - forget it. I built my own using a bicycle pump and a plastic quash bottle, but that's another story!

You could try writing to your CCG direct or your Patient Advice and Liaison Service

Flexi

User

Posted 25 Jul 2019 at 14:31

Originally Posted by: Online Community Member

I built my own using a bicycle pump and a plastic quash bottle, but that's another story!

I'm just imagining this being built on Blue Peter...

On top of my urine peak flow rate meter, we're quite an ingenious lot!

You can buy vacuum erection devices (VED) easily through Amazon and other less well known suppliers. In the high street, there's Ann Summers, although their selection is extremely limited. Independent sex shops may be better.

If you make one (or buy a cheap one), be careful not to overdo it on the vacuum side - you could damage your penis. I got one to play with as suggested by other contributors before I needed one for real. It has a pressure gauge which goes down to -8 PSI, but -2 PSI was more than enough and I suspect anything more could cause serious damage.

User

Posted 26 Jul 2019 at 09:16

Thanks so much for the feedback - it feels like this is going to be an on going battle between GP, hospital and CCG but I will keep pursuing.

The DIY pump suggestion took my breath away and if you’ve ever seen my DIY skills you’d understand why.

My ED appointment (not sure if it’s a full ED clinic or just to see the Pump rep) is 13/8 so not too long to wait.

Thanks again all.

User

Posted 26 Jul 2019 at 17:34

Hi and sorry I haven’t replied. I missed this thread. Yes your ED clinic should recommend a pump asap and write to your doctor who will give prescription. If he doesn’t then buy one. Even if only a cheapy off Ann Summers. You must use it all the time. Seems tedious at first , but 4 yrs post op I still use mine each time I wet shave. As for the Tadalafil/ Cialis it took me a whole year to get it after trialling it myself privately. My surgeon said there was no evidence it really works. My wife and I bit his head off as there were vast improvements. So he wrote to my GP and I got it — for 2 yrs. Then I had the same letter from Hampshire area saying it was being discontinued / no evidence / too expensive blah blah. I just got so upset and saw my doctor as things have been brilliant since I started it. He simply overrode the decision there and then and reissued the prescription. I have a friend who is a retired GP and she says any doctor can override rulings. I guess it depends on your area and practice and budget etc etc. Try again earnestly. The price has vastly dropped now it’s generic anyway. Even trial it yourself if you have the funds. I hope you find success

User

Posted 31 Jul 2019 at 14:44

Thanks for the advice Chris,

Bit of an update as a few developments. Via conversations on phone and email I have been told that the most current advice from NHS is they feel there is no/insufficient evidence to support prescribing 5mg Tadalafil and hence not available But, they have relaxed the rules on the higher doses meaning I should be able to get more and therefore GP is suggesting taking the higher dose and see what happens. I’ve been sent the latest NHS publications and it is sadly very clear.

Taking your advice Chris I’ve gone and got a pump and this has been a revelation! At this stage happy that I can use to keep blood flow but will be exploring more options once I get used to it. I still have hospital appointment for a pump later in August but just pleased to be able to take a bit more control myself.

Thanks all,

Russell

User

Posted 31 Jul 2019 at 16:17

Well at least you tried. You could get a pill-cutter from the chemist and cut your Tadalafil in half to take every 3 days - achieves something similar to the daily low dose.

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

User

Posted 31 Jul 2019 at 16:52

I agree with Lyn. I suppose the authorities have the best data but it was a revelation for me and many many other men. Maybe men just won’t talk about the results of the tablet. And remember all these tablets require visual or physical stimulation to work best. Every man needs a great wife to get some sort of recovery going. And yes you need to take control. I have all the way and have had amazing recovery. Sadly I’ll lose it all again when eventually further treatment needs to commence. If you can get 8 * 20mg tablets then you can 32 low doses or 16 mid doses. And don’t discount that simple penis ring which can change things dramatically. Get using that pump even if for 10 mins each day. You don’t need lube. I just keep my hair short and get some soap and water and off we go. He’s as healthy as ever now. If you get a professional pump with tight rings then you will be able to penetrate. Not quite the same but a sense of relief. Best wishes

User

Posted 31 Jul 2019 at 19:16

... or it is a purely commercial decision :-(

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

User

Posted 31 Jul 2019 at 19:17

Originally Posted by: Online Community Member

Every man needs a great wife

... or husband or partner or imagination ....

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

User

Posted 31 Jul 2019 at 19:53

Yes difficult not to be suspicious that so many decisions are cost based but equally the actual cost to purchase various options isn’t too bad, just really want to know what they consider is the right thing but I’m coming to the conclusion it can vary so much I’m best to just persevere and try and few things. And as I’ve said, already the pump gives me so much confidence that I feel so loads more positive from just a week ago. And that’s just the basic model, can’t imagine what a prescription one will be like.

Plus very lucky to have a fantastic, supportive and understanding wife.

Thanks again to all.

User

Posted 31 Jul 2019 at 21:36

Yes sorry , just someone they love and connect to , man or woman or friend xx

User

Posted 31 Jul 2019 at 22:12

Originally Posted by: Online Community Member

I have been told that the most current advice from NHS is they feel there is no/insufficient evidence to support prescribing 5mg Tadalafil and hence not available But, they have relaxed the rules on the higher doses meaning I should be able to get more and therefore GP is suggesting taking the higher dose and see what happens.

Kiwiruss,

What higher dose are you to be given, and how often?

Just wondering how it compares with the 5mg daily dose.

User

Posted 03 Aug 2019 at 12:25

Hi. I was also only offered Viagra event pills, they did not work for me, also to be honest, my wife and I have never been event sex minded, so taking a pill was a non starter, I explained all this to my GP and the cancer support staff at the hospital, and was then prescribed Tadafil 5mg daily, now on my fourth pack. Still not fully there yet but getting close, (11 months after surgery). Had my first spontaneous erection two days ago, hoping next time might be when the mood is right!!

User

Posted 03 Aug 2019 at 12:59

Originally Posted by: Online Community Member

Had my first spontaneous erection two days ago

Congratulations - that's definitely something to celebrate!

User

Posted 03 Aug 2019 at 13:03

Hi Andy,

Just a little more background. I’m diabetic and have been using Taladafil 20mg for a few years and always got on Very well with it. Take on a Saturday early morning (or Friday evening) and would still be getting positive results through until Monday and even a bit Tuesday. After my surgery follow up appointment I was given the 5mg daily dose and took for two months but to be honest haven’t seen any results re erections but I was quite happy as thought this was more about the longer penile health benefits and also I’m doing my best to be patient. Currently I’m back now on the event 20mg dose and again wouldn’t say I’m not seeing any effect but I am content to keep trying and back to see GP next week to discuss increased frequency plus week following at hospital urology to consider a ‘professional’ pump.

But courtesy of the good advice on this forum I bought a basic pump last weekend and this has been a revelation and feel much more settled knowing I’m getting the blood flowing below and for sure will be experimenting for recreational use 🤪🤪.

Russell

User

Posted 13 Aug 2019 at 23:09

Hi all - had my surgery 11 months ago - T3b. I had partial nerve sparing (lost all of one side). Started treating my ED (GP has been fantastic supporting urologist advice) about 3 months ago with 5mg ciallis with very modest results. Last month I got a pump and been using it regularly for 10 min sessions.

Then last night I had my first real erection and a most satisfying orgasim, not quite the same as pre op but certainly functional.

One thing I have learnt through all this is patience- whether it was the pump or the ciallis or just nature that got me this ‘boner’ I don’t care and I am very grateful. I am optimistically looking forward to more action!!

I am also very aware everyone’s recovery is different. Listen to the advice of your medical team.

Notification

Join the online community now.