Where do I start ?

User

Posted 01 Apr 2016 at 14:12

Walnut, I think it is the other way round. 2.5mg / 5mg Cialis is produced and licensed in England for rehabilitative purpose and approved by NICE. There is significant evidence (plenty of posts on here in the past and you should be able to find all the links through the search function) and this was provided to NICE at the time of the application which showed that men are more likely to recover EF if they take daily dose Cialis. The 10mg / 20mg dose is licensed for 'event' purposes but limited by NICE to 4 tablets per month.

Some CCGs have decided not to agree the prescribing of daily dose cialis, or they have agreed it but the local GP practice manager has decided that it is not a priority in their budget. Some men have to settle for the larger 'event' dose and then cut the tablets up. The research showed that viagra does not produce the same rehabilitative effect as cialis.

A note of caution to other readers: At the very start of our situation, the GP refused to prescribe Viagra (for an event) alongside daily dose Cialis so we asked about a private prescription. He explained that to opt for private scripts, John would have to waive his right to ANY ED treatment on the NHS. On balance, John decided it was better to stick within the NHS system and we were fortunate that the ED nurse was fantastic (and scary - GP gave in to her immediately).

Most consultants are not permitted to issue regular prescriptions to patients - they must defer to the GP for ongoing meds.

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

User

Posted 01 Apr 2016 at 14:17

Happychappy

Like others disappointed with the attitude of your GP.

I was prescribed the pump by ED consultant no problem. Then was prescribed daily sildeafil again no problem. Finally got 4 muse a month, nearly got 6 a month because that is what the carton quantity is, like a fool I mentioned I should only get four a month so that's what I got.

I have found the daily sildeafil is also helping with the incontinence, not sure where you are with that.

Thanks Chris

User

Posted 01 Apr 2016 at 14:27

Originally Posted by: Online Community Member

Happychappy
.... like a fool I mentioned I should only get four a month so that's what I got.

This made me laugh and then I thought of all those poor souls who came along after you and are now destined to forever settle for once-a-week sex :-(

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

User

Posted 01 Apr 2016 at 14:43

Originally Posted by: Online Community Member

Happychappy
.... like a fool I mentioned I should only get four a month so that's what I got.

This made me laugh and then I thought of all those poor souls who came along after you and are now destined to forever settle for once-a-week sex :-(

Chris... I kept me gob shut and get a pack of 6 x 1000 mcg's applications a month.... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Luther

User

Posted 01 Apr 2016 at 14:56

Originally Posted by: Online Community Member

Happychappy
.... like a fool I mentioned I should only get four a month so that's what I got.

This made me laugh and then I thought of all those poor souls who came along after you and are now destined to forever settle for once-a-week sex :-(

Chris... I kept me gob shut and get a pack of 6 x 1000 mcg's applications a month.... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Luther

Lyn/Luther

Thank you so much for your support and rubbing it in.

Only joking, I am not going to feel to guilty our local boots only supplies one other person in our area and my GP had never prescribed it to anyone before me.

On a serious note would happychappy be better off on sildeafil rather than nothing, I am getting some tumescence from daily use. Dr Google "says" ( no lecturers please) daily 25 mg sildeafil has shown some improvement in tumescence, my 100mg should be lifting my hat off. It also says it can aggravate gout and I can confirm that is true.

PS

Thanks Chris

Edited by member 01 Apr 2016 at 17:24 | Reason: Not specified

User

Posted 01 Apr 2016 at 15:10

Thank you all for your understanding, next week when I go to see the consultant, I will call in to see the ED nurse whom I only met once and ended up sponsoring her for a marathon she was doing last week as part of the recent fund raising for prostatecanceruk just shows there really are some lovely people.

I appreciate the NHS is in dire straits, but look at my condition compared to the line of locals at Boots chemis for their daily fix of methadone, they don't seem to have a problem obtaining it, as well as the advertising at my surgery of free nicotine patches, both ailments being self induced, I didn't ask for this damn disease, plus the fact that the surgery has cost me just over £14k, with follow ups at £200 a throw and the last Blood and urine tests cost £495, so it isn't as if I have actually ever had anything from the NHS for attempting to treat this disease,

I am due to see the consultant so will raise this as its about the only thing I can raise? best go before i feel sorry for myself, thanks again, your support is very much appreciated

Regards
Pat

Forgot to add, one last thing I found "amusing", insensitive or so out of touch was when the GP had his laugh and berated me for asking for the cialis, was as he was typing the Sildenfafil prescription, prior to me getting up and leaving, he said " as you have never had Sildenafli before, best take it on your own, when doing your accounts or something, you need to self stimulate if you understand what I mean, and it may be a bit embarrassing if you take it with the wife there "?

Edited by member 01 Apr 2016 at 15:18 | Reason: Not specified

User

Posted 01 Apr 2016 at 15:22

HC
Hi OMG I think your GP should get the award for "Trump of the month" what a thoughtless and unprofessional way to behave.

Your consultant knows that there is evidence to show a low dose of cialis taken daily (usually 5mg) has helped many men in your situation. Sadly your GP can disagree with him and refuse to prescribe it but he has no right to be so dismissive and rude.
I don't really have any knowledge on what works for recovery and what works for events so I will leave that to those that do. However I do know that you should not just give up.

I really hope that your consultant will refer you to the ED clinic asap so that you can get all the help and support you need and are absolutely entitled to.

I wish you all the very best and your GP a kick up the backside

xxx
Mo

User

Posted 01 Apr 2016 at 15:32

Happychappy

I did not realise you had accepted the sildeafil, so what dose and how many per month did you get.

Think I agree with Mo about an award for your GP.

Thanks Chris

User

Posted 01 Apr 2016 at 16:04

Lyn,

I understand that there is NICE guidance on the use of 5mg Cialis for individuals with erectile dysfunction who also have benign prostatic hyperplasia, but I'm unable to find any relating to penile rehab following prostatectomy.

There is variability between surgeons as to when daily Cialis should be initiated- and unless the GP is amenable to prescribing, this timing becomes academic when the NICE guidance algorithm next step is referral (the wait could hardly be described as rapid access) to a specialist service for erectile dysfunction. Yet we are told that early prescribing minimises the likelihood of fibrosis of the corpus cavernosa.

I haven't seen significant evidence for daily Cialis- but as my Consultant recommends it, that's good enough for me, I 've read what I can and I like the idea of doing something rather than nothing. I note that the following RCT - which seems to give weight to the argument for daily Cialis in the target population some of us come under- was not deemed sufficient to alter the historical approach to ED treatment

http://www.europeanurology.com/article/S0302-2838(13)01054-3/abstract/effects-of-tadalafil-treatment-on-erectile-function-recovery-following-bilateral-nerve-sparing-radical-prostatectomy-a-randomised-placebo-controlled-study-reactt

Their decision may have been influenced by this

http://lib.ajaums.ac.ir/booklist/1-s2.0-S0302283813010919-main.pdf

Viewing the average ED advice ( see page 6 of the following)

http://www.lancsmmg.nhs.uk/wp-content/uploads/sites/3/2013/04/Erectile-Dysfunction-Guideline-Version-1.0.pdf

I detect reliance on viagra, despite the conceptual benefits of Cialis raised in the above study and comments. Have a look at the top of page 7 of 17 on the list below for a bombshell!

https://www.prescqipp.info/drop-list/finish/171-drop-list/2047-bulletin-117-drop-list

I looked into the cutting up of higher dose tablets but was advised that the tablets are film coated and a challenge to achieve consistent dosing with a fragmented tablet. I guess some will take the approach that at least they're taking something.

Edited by member 01 Apr 2016 at 16:07 | Reason: Not specified

User

Posted 01 Apr 2016 at 17:06

Chris, I didn't accept the sildenafil, he was going to prescribe 100mg ? which clearly wasn't a low dose, the consultant explained the reason for a daily 5mg of Cialis was to improve and increase blood flow and hopefully this would kick start things, I will speak next week and hopefully resolve this, but I prefer a consultant urologist advice who hopefully specialises in this problem, rather than an accountant with stethoscope, I will let you know.

User

Posted 01 Apr 2016 at 17:44

Hi Happychappy

I am so sorry to hear of the poor treatment you have received from your GP. I think it is appalling.

Forum friends have already offered good advice so I won't repeat. But what I would say is please don't give up! Only those affected by PCa and the ED side effect know what it's like - if your GP had ED as a result of PCa maybe he would have been more sympathetic. Although I would have thought a man would understand how another man felt about loss of function.

I wish you good luck with your next meeting with your ED nurse and hope you will get the best treatment that you deserve. As I said, please don't give up on this!

Best wishes.

User

Posted 01 Apr 2016 at 18:16

Originally Posted by: Online Community Member

Hi Happychappy

Although I would have thought a man would understand how another man felt about loss of function.

Best wishes.

Quite ironic that, the GP who did all my prescriptions is a women,she did at one time work in Urology.

Thanks Chris

User

Posted 01 Apr 2016 at 23:10

Happychappy, your GP is a joke. Absolutely shocking so please, please tell me he is just very old and behind the times. Presumably he also advises his female patients to lay back and think of England.

Walnut, I have been studying the research on ED and regaining EF for 7 years and 4 months. The difficulty sometimes is separating out the starting premise. Some of the links you quote were reviewing whether daily cialis is more effective in producing a useable erection than the 'event' dose or a placebo would be, and whether daily dose made a greater or lesser contribution to achieving natural erections within a given timescale. The EU report was specifically looking at whether daily cialis contributes to the healing of the nerve bundles post-RP, which is a different thing entirely.

Likewise, the reference to page 7. Daily Cialis is not recommended for men with ED 'in most cases' as research shows that event dose cialis or viagra is more effective and / or cheaper. However, 'in most cases' is a glorious phrase and explains the differing CCG stances. The research indicates that daily cialis contributes to the healing of the nerve bundles (NOT to getting an erection) and can therefore be prescribed to a man post-RP or post-RT but - and here is the rub - can't be prescribed to a man on the basis he has ED, it has to be 'for penile rehabilitation' Some CCGs have gone against this, some have a 3 month or 6 month maximum limit while others support it.

In John's case, he had daily Cialis for 4 years, alongside Viagra, Caverject and then Levitra for 'events'. As he no longer has physical ED and any remaining problems are emotional, he doesn't have the Cialis now but does take Levitra or Viagra sometimes if he is lacking confidence. I am thankful that we live in a CCG area with fully-funded andrology services, a superb team of ED nurses and a generous approach to treating youngish men with PCa side effects.

I hope that helps.

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

User

Posted 02 Apr 2016 at 09:00

Lyn

can you provide a link to the research you cite. I can't find it.

When I get it I can reply to your comments.

Thanks.

User

Posted 02 Apr 2016 at 17:08

Sorry Walnut, which research do you mean? I was commenting on the links you posted above.

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

User

Posted 03 Apr 2016 at 09:05

Hi happy chappy I have just caught up with the treatment you received from your Dr or should I say lack of it! Totally unacceptable behaviour-are there any other drs you could see, also I know it maybe difficult but raise it with the practice manager. I hope you get support very soon, we have been very lucky excellent consultant and drs just our specialist nurse was unhelpful. Nurses on this website are fantastic and have helped no end. Jx

User

Posted 06 May 2016 at 08:19

Hi Thanks again for all your replies, just to update,

I went to see the Consultant just over four weeks ago and explained the situation with the GP who would only prescribe Sildenafil and how he had recommended Cialis, his response was he cannot issue prescriptions and can only advise the GP, however, he understands each surgery is their own business and they can decide what to prescribe, so if that is what they have said then their is nothing that he can do, he then went on to say, there is no difference anyway as both the drugs are from the same family and work the same way ?

Any further discussion about the way one works longer and the importance of penial rehabilitation was met with he can only advise and will write to the GP again, but it is their decision, and he recommended trying the Sildenafil.

I also asked how I obtain a vacuum pump, he said they, the hospital Urology and ED department do not issue them, again, this was for the GP surgery, he would however contact the alleged specialist nurses in the ED clinic to arrange a loan of a pump to see if I got on with it, that was four weeks ago, no contact from the nurses, but then again I have never had a reply from them when I left a voice mail immediately post op regarding catheter issues etc.

I therefore saw my GP after seeing the consultant, and had a prescription of Sildenafil 100mg which i broke in half and tried. No real benefit, incredible headache, very flushed and hot face but nothing else, I have persevered with the 12 tablets I was prescribed over the past four weeks with no real results.

Yesterday I had my prescriptions for other medication renewed so put in for another prescription of Sildenafil, a GP rang and as this was the first repeat prescription asked how the Sildenafil was working, I said no real difference yet, she said in that case it clearly doesn't work so I will not reissue it

I argued strongly that this decision was purely financial and not in my best interests as medication appeared the only hope I had to regain a normal life, and I had accepted this was a long journey, I wasn't expecting a quick fix, so why was she ! I am sure she has issued repeat prescriptions for methadone for druggies who made a conscious decision to take drugs, and Nicotene patches for smokers, my condition isn't voluntary or self induced, so why give up after one prescription!

I also requested a prescription for a vacuum pump, but again she said this was only available if purchased privately or if the ED clinic and consultant prescribed it, I explained I had already been down that road, and they passed it back to the GP, so basically going round in circles. She agreed one further repeat prescription for 12 tablets and will write to the Consultant as it appears the Sildenafil is not working and therefore is not cost effective to repeat it.

I asked where do I go from here if the Sildenafil and vacuum pump are not prescribed, her response was they are available privately.

I would be interested to know, are the vacuum pumps available on the NHS, her words were, this appliance is a red drug which cannot be prescribed by a GP surgery and can only be prescribed by a Consultant ? Also how many tablets such as Sildenafil are normally or on average, prescribed for a one month or three month prescription.

User

Posted 06 May 2016 at 14:16

Oh dear, not a great level of knowledge and understanding from the GP then?

NHS guideline is 4 viagra / sildenafil per month. Some GPs prescribe more to younger men but that is at their discretion. And I believe your specialist was absolutely correct - usually, the urologist / oncologist/ ED specialist writes to the GP requesting that something is prescribed and then the GP prescribes it. In our case, the ED nurse (a prescribing nurse) could write prescriptions for the Cialis etc but then wrote to the GP with instructions for continuing meds. When it came to the vacuum, she wrote the letter but we had to persuade the GP to prescribe because it comes out of his budget.

There is a GP code for prescribing the vacuum pumps - perhaps go back and explain to her that they fall within your entitlement as a man affected by PCa and all over England, there are GPs who do prescribe? In fact, better still, why not write stating this and ask for a written explanation of her refusal to prescribe treatments which NICE says you should be entitled to, and which you would receive if you lived in a different postcode.

I would also ask the GP to make a proper referral to the ED clinic for you rather than depend on phone calls. If tablets don't work and you can't get a pump, I don't hold out much hope of this silly doctor giving you access to injections or muse, etc :-(

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

User

Posted 06 May 2016 at 18:41

I think we live in adjoining counties and not sure if it is the hospitals or GPs that are problem. I think my GP might just do what the consultant suggests, I got 4 sildenafil per month and a pump six weeks post op on the recommendation of the ED consultant. I stopped the sildenafil when the surgeon said it was a waste of time. About 10 months post op after getting some tumescence the surgeon put me on daily 100mg sildenafil, the blue vision and stuffed up nose does subside, but they are having some effect, not bad for a "supposedly" non nerve sparring op. Bit late for you and me but the attached link explains that tumescence and erections are controlled by separate nerves and may explain why some of my nerves appear to still works. I am now 2 years and two weeks post op and as well as some tumescence I can also "flex" my penis. Also got Muse on the advice of the ED consultant.

https://youtu.be/0sC6sZCMG7w

I am sure I read that the sildenafil or equivalent PDE5 should only be withdrawn after two years if there is no success. I think this is from the latest NICE guidelines and although they are guidelines I am sure I read that they can be used in lawsuits if not adhered too.

Managing adverse effects of radical treatment

Sexual dysfunction

1.3.31 Ensure that men have early and ongoing access to specialist erectile dysfunction services. [2008, amended 2014]

1.3.32 Offer men with prostate cancer who experience loss of erectile function phosphodiesterase type 5 (PDE5) inhibitors to improve their chance of spontaneous erections. [2008]

1.3.33 If PDE5 inhibitors fail to restore erectile function or are contraindicated, offer men vacuum devices, intraurethral inserts or penile injections, or penile prostheses as an alternative. [2008]

This is and extract from the uptake of the guidance your GP must be in the 10% that are left.

Uptake data for this guidance

Recommendation: 1.3.31 Ensure that men have early and ongoing access to specialist erectile dysfunction services

Audit standard: Percentage of trusts in England that provide prostate cancer services that have sexual function services available

March 2014

90%

Thanks Chris

Edited by member 06 May 2016 at 18:43 | Reason: Not specified

User

Posted 06 May 2016 at 20:12

Lyn/Chris

Thank you very much for your replies, I think it is information such as this which may help, I know I haven't pushed this hard enough I just do not seem to deal with or have any appetite for conflict and unfortunately just like in bed, I roll over to easily, I was never like this, but now I seem to have lost interest in fighting my corner!

I have left a further message, which is now the third, with the ED department asking for a call back, but to no avail, I feel the lack of support and interest stems from the fact that I didn't have the operation locally and had the audacity to find another surgeon and now have tried to come back into the fold to have follow up treatment, which clearly isn't happening?

One other thing I would be interested in, is what is the length of time between PSA tests, I have been told they will do another PSA test in four months, I said I thought it was three, but I was told three per year is enough, is this the average or am I getting paranoid. Thanks for the info

Regards

Pat

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