On Cialis 9 weeks after op

User

Posted 12 Jun 2014 at 12:59

Had my 6th cialis tablet last night, and there is nothing happening downstairs at the moment, try as I might.

Hope the tablets are working their magic on my nerves. Will be seeing my GP in 2 weeks, hoping he will prescribe me a pump, praying he's heard from Christie's.

Not feeling down about it yet - still euphoric over hopefully getting rid of the cancer before too much damage was done.

Stay Calm And Carry On.

User

Posted 13 Jun 2014 at 02:31

Expecting a reaction at 6 or even 9 weeks is unrealistic. There are a tiny minority who regain erections early but medics recognise that the most significant progress is usually made between 12 - 24 months post op. They do say that whatever state your EF is in at the 2 year mark is how you are likely to remain but we have disproved that in our house where John's biggest improvement came between the 2nd and 3rd year and it is only now - 4 years post-op - that he has stopped needing the Cialis 5mg daily to boost the Viagra.

It is depressing that not all CCGs will agree to fund Cialis one-a-day dose but those men that are only offered the 4 tablets per month regime could cut each tablet in half and take twice a week or cut into quarters and take on alternate days. Of course getting 35mg per week is bound to be better than getting 20mg per week but spreading the 20mg out is better than taking it all at once!

Later on, if you do regain any erection, the one-a-day regime can help it to last a bit longer.

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

User

Posted 13 Jun 2014 at 07:23

Lyn, you are a mine of information on this subject, gained through personal experience I know. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Perhaps you don't realise fully just HOW helpful you are to members such as I who only joined a couple of months ago and need to have these questions answered.
I speak to a nurse, and I think I understand, but then they are really busy so it's not a "chat" situation and I know from the way the phone rings in the background that others need her too.
Thanks to you and all the other contributors on this site. It's a lifeline for others like me

Edited by member 13 Jun 2014 at 07:24 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 12 Jun 2014 at 16:42

My daily dosage is 5mg.

It is clear that treatment across the UK following robotic surgery varies enormously. There are so many different experiences. I wonder where the best is, and how it can be standardised, so that everyone gets the same opportunities to solve their incontinence and ED issues, as well as the chance to discuss the cancer grade and PSA results and their implications.

Stay Calm And Carry On.

User

Posted 12 Jun 2014 at 16:45

Hi Johsan.

No there is no error, the 5mg daily dose is used as a recuperative measure helping blood supply around the area, not to help get an erection ( Martenstoves has unfortunately got it wrong). The 20 mg is a sexual aid taken approx an hour before intercourse but will normally need stimulation, things won't just raise on their own. GPs normally prescribe 4 tablets monthly.

Hope this helps

Life is for living

Barry (alias Barrington )

User

Posted 12 Jun 2014 at 17:08

I'm 5 weeks post RP, saw the consultant last week who recommended 5 mg of Cialis, I now have to wait a week to see my GP to get a prescription....nothing works fast in the NHS, but I'm greatfull my prostate and cancer have gone , the rest is small cheese !

User

Posted 21 Jun 2014 at 17:39

Oh! of course...it must have been me doing the splits when I was practicing my ballet....God! never thought of that.

Steve

User

Posted 09 Jul 2014 at 18:06

Hi Guys

Just to add to the conversation, I am just over a year and a half since surgery and I still take my Cialis 5mg daily. Like Lyn and a few others I take them in the morning when I get up. The difference between the dailies and the 20mg hit, is that dailies are all about blood flow and cellular health, with the added benefit in that it can help make you a bit more 'chubby' and may later on in recovery when the nerves pick up, aid an erection. It takes a week of taking the 5mg dailies to get the required dosage in you for max effect and then you are keeping it topped up. To test the difference between taking and not taking, you have to abstain from taking for a week for the drug to leave your body. I have done this on several occasions and used this evidence back with my GP to renew my repeat prescriptions as without the drug i dont get that flow that instigates semi's ( the start of spontaneous erections - morning wood etc ) which is the goal we are looking to achieve as we then know we are back to some form of normality/healing. There are people on here and I know people in other support forums I take part in who are still taking the dailies, 4, 5 years post op.

The 20mg dose is different , its about giving you an erection when you are stimulated. If that's all the GP has prescribed then I would recommend having a conversation with him as he doesn't understand the difference between the two treatments. You do need support from your urologist in this regard.

For those who don't suffer ED the way we do, healthy guys, they call the 20mg dose "The Weekender" as it lasts all weekend. It an equivalent treatment to taking a Viagra 100mg or a Levitra for effect purposes. Lots of people have issues with these kind of doses and the side effects of these are well publicized. However all I can say, is if you can persist with the 5mg or 2,5 mg daily dose then medical studies have proven the benefits for penile rehabilitation. If your GP is giving you the 4 a month 20mg and you are cutting them up thats great. You can always ask the GP for Generic Viagra ( Sildenafil ) onto of this. I am getting both. Even on a private prescription the generics cost about £1.50 for a 100mg tab at Asda or 80p online. Its not recommended to take a 100mg Viagra at the same time as a 20mg Cialis. ( I take my 100mg Viagra with my daily 5mg Cialis without a problem - but everyone is different ).

I would say taking the Viagra and Cialis has improved the firmness of my erections - so worth having a chat with your GP/Uro to get both. On the pump, hassle them to issue the letter as this is a real must early days for exercise. ( Am not keen on the purple ring induced stiffy for sex puposes, I use mine as a gym aid ).

Good luck

Eddie

Living life to the full, there is always someone worse of than yourself. Smile and get on with it.

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User

Posted 12 Jun 2014 at 13:15

Give yourself a chance SF2, http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

You are just over major surgery where your insides have had a good battering. The nerves many have been saved but the blood vessels in the area may be damaged, broken or restricted in some way. The Cialis will assist in maintaining and promoting circulation in the damaged area. It may take weeks or many months for any natural movement or twitching to occur. Constantly thinking about it, or trying to get movement may only hinder progress through increasing anxiety that it is not happening?

We all react differently to the operation. We all recover in different ways at different rates and with varying results. Your time will come!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif Be patient.

ATB

Dave

User

Posted 12 Jun 2014 at 15:03

I saw my GP yesterday (6 weeks post op) and he prescribed Cialis, 5mg one a day. I have 28 tablets to see how it works out. I took the second one this morning but no joy as yet even with my gorgeous wife wearing her bikini in the sunshine in the garden. I have certainly been feeling the signs even before the Cialis and especially first thing in the morning so I'm hopeful of some success. As ever...we shall see!

User

Posted 12 Jun 2014 at 16:22

Does the "normal" dose for Cialis vary. We have yet to go down this road but I spoke to John's nurse yesterday just to find out who we applied to (one of the nurses appears to be the official ED person) and was told that an appointment would be made and if we had a letter from the hospital to bring it to the appointment. Well I've just dug out the copy letter that was sent to us and it says 20mg and hour before planned intercourse. Has somebody made a typing error.?
Nurse also said that a pump could be supplied on the NHS and that the ED nurse would arrange a "demonstration" to show him how to use it properly.

Edited by member 12 Jun 2014 at 16:23 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 12 Jun 2014 at 16:42

My daily dosage is 5mg.

Stay Calm And Carry On.

User

Posted 12 Jun 2014 at 16:45

Hi Johsan.

Hope this helps

Life is for living

Barry (alias Barrington )

User

Posted 12 Jun 2014 at 16:47

paul is 5 weeks post op we see consultant on tuesday after a lot of problems getting info see my post for details

is it too soon to be asking about ED and help or not

User

Posted 12 Jun 2014 at 17:08

User

Posted 12 Jun 2014 at 17:17

mb5244 - definitely not too soon. As Lyn told me, the area needs every bit of encouragement for normal service to be resumed.

Stay Calm And Carry On.

User

Posted 12 Jun 2014 at 17:36

Originally Posted by: Online Community Member

mb5244 - definitely not too soon. As Lyn told me, the area needs every bit of encouragement for normal service to be resumed.

Quite correct, but you do not have to wait for Cialis or the equivalent.

Manual stimulation on a regular basis, will increase blood flow to the area. Warmth stimulates blood flow around the body. "Twirling", like a dancers nipple tassels twirl, your penis will get blood to the end and around it.

Enjoy! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Dave

User

Posted 12 Jun 2014 at 18:25

What a wonderful way with words. I always have a good play in the shower!

Stay Calm And Carry On.

User

Posted 13 Jun 2014 at 02:31

Later on, if you do regain any erection, the one-a-day regime can help it to last a bit longer.

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

User

Posted 13 Jun 2014 at 07:23

Edited by member 13 Jun 2014 at 07:24 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 13 Jun 2014 at 11:07

I echo that

although i knew there would be ED problems after surgery

its only down to lyn and all the other forum users that we know sooner treatment is started on it the better

so BIG THANK YOU

User

Posted 13 Jun 2014 at 12:07

Hi Barry ,Not wanting to intrude on your posts and being a relative novice to this site ( diagnose PC feb ,psa 27, gleason 3/4 and op 10 this month) have been catching up with some of the threads on here ,in particular yours.I would just like to say how Impressed I am with the way you handle all the crap that comes your way and how you still maintain a sense of humour.I would just like to wish you all the very best going forward and hope that all news is good news ,Good luck. Chris

To Infinity and Beyond

User

Posted 13 Jun 2014 at 18:50

Stimulation???

"Twirling", like a dancers nipple tassels twirl, your penis will get blood to the end and around it.

Yeah Yeah Yeah....That's okay but:

I prefer standing on the step ladders on the lawn first thing in the morning when the dew is down and dragging it back and forth in the grass....

alternatively, standing a couple of feet back from the urinal in the gents and knocking the end against the cold ceramic.....that gets blood to the end of it.

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User

Posted 13 Jun 2014 at 19:08

post removed by poster

Edited by member 13 Jun 2014 at 21:45 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 18 Jun 2014 at 19:49

I posted this on Lyn's thread but should probably have gone here for continuity, so I will repost what I wrote this morning and add further to it.

I have found myself in increasing discomfort in my legs during the night, 2 weeks since starting on the 5 mg cailis tablets, aimed at helping nerve repair following robotic RP.

It went from an aching to bordering on the painful, so that I was waking up early, and tossing and turning in bed, and disturbing my good lady.

I have decided to change to taking the tablet in the morning instead of bedtime, and will cut them in half, to change the dosage to 2.5 mg. As I have no problems when moving during the day, I am hoping this will make things more comfortable, and the effect during the night will be reduced.

Stay Calm And Carry On.

User

Posted 18 Jun 2014 at 20:21

SF2,

A side effect of the Cialis is aching legs. Been there done that. It did wear off in my case, and when I considered the gains, I decided to persevere. It did wake me at night for a couple of weeks as far as I recall. It was quite uncomfortable, 5 or 6/10, I did not resort to painkillers.

HTH

Dave

User

Posted 19 Jun 2014 at 08:54

Just before bed time, I felt my leg ache/pain, so took 2 ibuprofen and had an excellent night's sleep without feeling anything. Can still feel a little something this morning, though.

Stay Calm And Carry On.

User

Posted 19 Jun 2014 at 09:42

I have always taken my pills at breakfast rather than at bedtime and have never been woken by leg pain. During the day I do get some pain and lately have been taking paracetamol around lunchtime to alleviate it. I was thinking about stopping the Cialis as I am about to go to Austria on a bike and don't want to have the leg pain as a distraction. However, if the pain does get better or go away over time as has been referred to above I think I should carry on with it.

User

Posted 19 Jun 2014 at 17:26

Like Countryboy, it was always John's view that the chance of an intimate life was worth the aches & pains. He has always taken the daily dose in the morning.

Edited by member 19 Jun 2014 at 17:29 | Reason: Not specified

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

User

Posted 20 Jun 2014 at 00:42

Felt the legs again around noon and took some more painkillers. Will try the half a tablet regime starting tomorrow morning. I can honestly say the discomfort in the legs was far worse than anything experienced following the op 10 weeks ago!

On a more positive note, only 2 pads during the day, although I have done a lot of sitting as we were driving home after a stop at the very interesting Elgar museum. (And no speeding motor bikes this time!)

Stay Calm And Carry On.

User

Posted 20 Jun 2014 at 09:06

My husband agrees with you SF2 about the back and leg pain. Far worse than any pain after the op, he hardly took any painkillers after he came home. This pain though has had him tossing and turning in bed just cannot get comfortable, until painkillers kick in. He is going to break his 20mg up and take them that way, until we can get back to GP. We are off for a weeks break tomorrow, just hope he has packed enough pads.

User

Posted 20 Jun 2014 at 14:48

Just a note of caution guys, there may be other reasons for leg pain, and some are more serious than others. Make sure you don't have deep vein thrombosis, sciatica, trapped nerve, pressure sores, pains from HT, kidney problems, overdoing the golf, poor gold technique, being active after weeks of recuperation, bone mets, constipation, lymphodoema .... just be cautious!

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

User

Posted 20 Jun 2014 at 14:59

Can't be the golf, Lyn. I haven't played for a week, and never had problems whilst playing. Maybe I need to play more! I took half a tablet earlier today, and I did not feel anything last night. My previous tablet was Tuesday night. I also didn't feel any discomfort when walking.

Being static seems to lead to problems, so I am hoping taking only half a tablet earlier in the day will significantly reduce the difficulties I have had.

Enjoy Leicester, Lyn. Hope you all have a very enjoyable time.

Paul

Stay Calm And Carry On.

User

Posted 21 Jun 2014 at 17:39

Oh! of course...it must have been me doing the splits when I was practicing my ballet....God! never thought of that.

Steve

User

Posted 30 Jun 2014 at 10:22

I had a week of no side effects taking half a 5 mg tablet in the morning, so have now had 4 full tablets again without the leg pain, so the simple advice is, although the instructions say take any time during the day, it is better to take them in the morning.

I'm off to see my GP in 9 days, so I am also hoping he has had his letter from Christie's telling him I need a pump. There has been no sign of life down under approaching 12 weeks post op, but I think that it is still early days.

Paul

Edited by member 30 Jun 2014 at 10:23 | Reason: Not specified

Stay Calm And Carry On.

User

Posted 09 Jul 2014 at 11:14

Just been to see my GP. Got 2 months cialis, but still no pump. GP was unsure as to procedure and was going to investigate further within the practice. Furthermore, although I was told a letter would be sent from the registrar at Christies, nothing has been received. Grrrrrrrrhhhhh!!!!

Stay Calm And Carry On.

User

Posted 09 Jul 2014 at 18:06

Hi Guys

Good luck

Eddie

Living life to the full, there is always someone worse of than yourself. Smile and get on with it.

User

Posted 13 Aug 2014 at 23:23

Went to Christie's today for my 2nd follow up.

I was advised to:

stop taking the 5mg cialis

use the pump without the rings to try for about 3 erections every other day

take the Sildenafil once weekly.

This all seems different to advice from Lyn.

Comments appreciated.

Stay Calm And Carry On.

User

Posted 14 Aug 2014 at 00:45

Wow! What was the rationale? Is there anything in your medical history that contraindicates Cialis? Or is it just that they have realised you are taking both Cialis and Viagra? I did warn you right at the start that this is not usually allowed in the NHS and needs close monitoring by the specialist or ED clinic.

Given the choice, I think John would have stuck with the Cialis and given up the Viagra but perhaps you could experiment with each on their own and see what helps most.

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

User

Posted 14 Aug 2014 at 11:05

Just had a go with the pump with no rings as advised. Can't get any response at all.

Tried again standing up. Nothing like the massive length I had before, (you can believe that if you want!), but some extension. Try again on Saturday!

Edited by member 14 Aug 2014 at 12:36 | Reason: Not specified

Stay Calm And Carry On.

User

Posted 14 Aug 2014 at 12:55

SF2, I might be wrong but if you have a Rapport I don't think it will work properly without the rings because the end of the tube is different. Perhaps the person at the hospital wasn't aware of the difference between Rapport and the other brands??? With all of them, the trick is to pump without wobbling the tube and breaking the seal against your skin - John found sitting on the very edge of the bed with feet firmly planted on the floor gave the steadiest position.

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

User

Posted 14 Aug 2014 at 13:08

Thanks, Lyn.

I have sent an email to the manufacturer, asking about the Rapport Premier's suitability.

Paul

Stay Calm And Carry On.

User

Posted 22 Aug 2014 at 13:29

Tried my first Sidenafil last night on our wedding anniversary. No reaction whatsoever. Have to keep trying with the pump that does bring on some enlargement but nothing like a full erection.

Stay Calm And Carry On.

User

Posted 22 Aug 2014 at 14:34

Hi 6F2

I intend to ask my GP if he can put me back on Cialis 5mg daily instead of the 8 x 20mg that was prescribed for me recently.....

I think in my case at 10 weeks post op it's too early to expect the 20 mg Cialis to be fully effective... ( I have 50% nerves spared )

I'm using my vacuum pump ( ErecAid Esteem ) with good results, so am happy to continue with that until things hopefully start to liven up without aid in due course....

User

Posted 22 Aug 2014 at 17:20

Not sure of this will help, hinder or reassure you SF2, and others, but I found the impact of the meds varied at different times and with different effects. There are other factors that may help or hinder your recovery.

You have a pm.

dave

Edited by member 22 Aug 2014 at 17:36 | Reason: Not specified

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