Cialis Withdrawn — Gutted ! - Sex and relationships - Prostate Cancer UK Online Community

User

Posted 26 May 2018 at 12:19

So here I am 3 yrs post op and despite being told I’m incurable and have further treatment to come my life is essentially perfectly normal. I work hard and have recovered near perfectly re continence and ED. Yes I take daily 5mg Cialis and use a ring but essentially we can have full sex on tap. So now I get a letter telling me despite Cialis now being available generically and cheaper than ever , that I’m not allowed daily Cialis anymore and will be given 4x 10 mg per month for “ occasions “. I’m simply utterly distraught that this is going to mix my life up again. They also claim there is STILL no evidence that daily dose is better than occasion dosage. Feel like crying after working so hard to get back to normal :-((

If life gives you lemons , then make lemonade

User

Posted 06 Jun 2018 at 09:55

Just come off the phone to GP who says he is more than happy to keep me on daily dose 5mg Tadalafil. Such a great result and given I may only need it a few more months before further treatment happens possibly negating my need for it ........ Anyway a happy bunny today.

If life gives you lemons , then make lemonade

User

Posted 06 Jun 2018 at 10:46

Great news Chris - so pleased for you. I thought I was already having a good as the bike flew through it's MOT this morning, it's a glorious day and now your news as well.

All the best

Kevan

User

Posted 06 Jun 2018 at 15:59

Enjoy!!

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

User

Posted 04 Jul 2018 at 12:17

Hi Bill it was over a year before I was given Cialis 5mg post op. I’d tried the other event doses of Viagra , Spedra, Levitra etc with no luck. I used Caverject injections which sometimes gave me an erection but ALWAYS gave me intense throbbing. I tried Invicorp25 injections which are amazing. My post code wouldn’t let me have daily Cialis 5mg so I bought generic on line 20 mg and cut them up. Self funded for 3 months. I noticed a much fuller warmer swollen penis each morning after only a week and it has gone from strength to strength and now I have a full erection at will although 2” smaller than it used to be tbh. Sometimes the addition of a rubber ring makes ALL the difference. We are all different mind. !! Take care and good luck

If life gives you lemons , then make lemonade

User

Posted 04 Jul 2018 at 17:35

Hi Chris,

what's the best price you've found for the Cialis brand equivalent online?

I found MedExpress, seems reasonable.

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 04 Jul 2018 at 18:00

Hi Bill63,

I hope you continue to get improvements with your meds.

Early in my recovery I found that mixing and matching meds worked best for me. Probably will not work for anyone

else, so I would not try it. But I was pro-acrtivce in my recovery try and prepared to experiment and push the boundary to achieve the chance of progress, or fail, knowing that at least I had tried.

My prescription started with 28 x 5mg Tadalafil (Cialis), so 1 tablet a day for 28 days. And 8 x 50mg Sildenafil (Viagra) for "events".

The Cialis gave me, what I thought at the time were, terrible leg aches, bad enough to keep me awake or wake me for all the wrong reasons for about 2 months. Really very painful and uncomfortable, but having read about the potential gains, I stuck with them. Took loads of Paracetamol and Ibuprofen. Didn't do a lot of good, but helped a bit. So pleased that I did. Looking back, those leg ache's were not that bad at all, completely bearable considering the gains I achieved.

I do understand the irritation of having or needing to pay for meds that others may get on prescription depending on where they live, and how supportive their GP is. But, needs must.

Have you considered buying meds from a reputable site and seeing what effect you get?

What is still bizarre to me is that I can drink copiously, have a very enjoyable evening which, due to the drink I can not remember the next morning. But I am happy.

My GP explained to me that a degree of ED may be due to anxiety, and once you are sufficiently intoxicated, you cease to be anxious.

Won't work for everyone. But if it works for just ONE other, it is worth a try, maybe?

atb

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 04 Jul 2018 at 19:13

Dave , I used the various Kamagra UK sites. They were all fine generic meds mostly made by Ajanta in India. Yes you take the risk but it all seemed to work for me. I’m sure I was getting 8 x 20mg for roughly £20 , so that was a month if you chopped them up.

If life gives you lemons , then make lemonade

User

Posted 06 Jul 2018 at 19:59

Bill, don’t be frightened of stopping viagra to try something else. There is no scientific evidence that viagra aids recovery in any way (it works differently to Cialis) so not taking it will do no harm. Perhaps ask for a prescription for Levitra tablets or Muse pellets instead - we found that Levitra works slightly better for John.

Also, are you definitely taking the viagra correctly? On an empty stomach? And with enough hours for it to take effect? If John takes a viagra in the afternoon it will work in the evening - if he takes it at bedtime he will have an erection the next morning.

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

User

Posted 09 Jul 2018 at 07:39

Thanks Lyn

Yes I know about the full\empty stomach. I do get some slight result from the Viagra but nothing of any use and the only difference I find is that it takes about 30 minutes to have an effect on an empty stomach and 90 minutes on a full stomach. This is also obvious from the side effects, face flush and feeling of a head cold etc.

Interestingly my Uro prescribed 1x100mg per week and said that is plenty. "Its not to give you a raging hard on just to aid your recovery". It was my GP that said "use it or lose it" and prescribed 16 per month. The same Uro was very casual about the pump. Saying some use it and some dont and there is no real evidence that it is of any benifet with regard to recovery but is useful for getting an erection for sex! He never gave any advice on frequency and method etc!

All my info and advice on penile rehab has come from this site and the web and yourself and Chris J in particular. So a big thanks to you both and all others who contrabute to this site.

From my whole experience leading up to and after diagnosis I have learned not to just put my trust in the medical professionals, as they are influenced by policy, budget and personal opinion etc. But that we must all take responsibility for our own health, do our own research and fight for what we believe to be the best for our particular circumstances.

Thanks again and good luck to all.

Cheers
Bill

Edited by member 09 Jul 2018 at 10:04 | Reason: Added info

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User

Posted 26 May 2018 at 14:42

hey Chris,

that really sucks, I can imagine how you are feeling.

does this mean that Cialis 5mg as a drug is being discontinued?

User

Posted 26 May 2018 at 16:55

No not at all mate. And the actual drug Tadalafil has just come off patent. My last two lots have not been branded Cialis. So on one hand they telling me it’s cheaper , and then telling me they’re taking it away. All I’ll get is 4 x 10 mg and will then be into the whole when to take it and at what dose and at what time etc.

Begging letter on the way and also see if I can make up the deficit by paying at my pharmacy

If life gives you lemons , then make lemonade

User

Posted 26 May 2018 at 18:45

There's logic for you!!

Barry

User

Posted 26 May 2018 at 21:46

Well,

living on Scotland, I have been being prescribed Cislis 5mg since my RP 3 years ago. like you Chris, sex life is like normal and on tap with it, although I take it every other day and sometimes more infrequently - so the psychological aspect is part of it

But I would be devastated if the 5mg prescription was stopped

User

Posted 26 May 2018 at 23:30

No-one gets it forever Chris - the NICE rationale is for nerve repair post op, and this long after the op your nerves are as repaired as anyone's. Plus it is rather more expensive than the event dose. You have done well to get it on prescription for this long; I think John had it for about 3 years but then it stopped.

See how you go with the event dose - you could cut the tablets in half and take twice a week or just get used to taking a tablet when you think your luck is in. Yes it is a blow but we all have to deal with it and many men can't even get the daily dose so you gave been very fortunate.

When you eventually start treatment you will perhaps be eligible again?

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

User

Posted 27 May 2018 at 03:30

Eli Lilly’s patent on Cialis expired late last year and the generic version of Tadalafil is now made by Teva, Sanofi and my last lot by another firm whose names escapes me. With competition the price should come down eventually.

I travel widely and would often pick up over-the-counter generic Cialis in other countries such as India (Megalis) for next to nothing. I didn’t buy from dodgy back street chemists - Wal-Mart in Acapulco, Boots in Thailand, etc.

My GP recently said I was entitled to 2 x four packs of 20mg Tadalafil or 28 x 5mg per month on the NHS. Before I was diagnosed with cancer I had a deal with my local chemist and paid £53 for 28 x 5mg Cialis - normal price £78.

Edited by member 27 May 2018 at 03:42 | Reason: Not specified

User

Posted 27 May 2018 at 06:32

Thanks guys.

Nowhere in the letter at all did this explain that it was time related. It was about prescribing Cialis/Tadalafil and cost , and then went on to say research in our area shows it to be no more effective than event dosing.

I’ve put my toys back in my pram now and will see if I can buy from pharmacy. Alternatively they are pretty cheap on the internet and they work as I self-trialled if you remember.

Lyn I’m desperate to keep things stable , as it’s exactly the opposite of what you say —- when I next start treatment Cialis will be useless. They’d be better prescribing a library ticket :-(

If life gives you lemons , then make lemonade

User

Posted 27 May 2018 at 08:31

Good for you Chris 👍

User

Posted 27 May 2018 at 09:07

Chris, have you tried stopping taking them for a while to see if doing so actually does have an adverse effect? Might be worth checking that they are still required before spending money on private prescriptions!

Hope all goes well for you,

Chris

User

Posted 27 May 2018 at 10:00

Thanks Chris. I admit I’ve not tried stopping tbh. Just don’t want to rock the boat and make use of it while I can. But it’s an idea !!

If life gives you lemons , then make lemonade

User

Posted 27 May 2018 at 10:58

In last year's version of the NICE guidelines there was a limit of two years for PE5 medication if it was NOT working. My daily sildenafil is still on my repeat prescription over three years on although I have not actually requested it for a long time.

Thanks Chris

User

Posted 27 May 2018 at 15:31

Originally Posted by: Online Community Member

Lyn I’m desperate to keep things stable , as it’s exactly the opposite of what you say —- when I next start treatment Cialis will be useless. They’d be better prescribing a library ticket :-(

You don't know that although you are doing such a good job of convincing yourself it is going to happen, it will become a self fulfilling prophesy if you are not careful.

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

User

Posted 27 May 2018 at 15:45

Haha well it has to be said even seven pints of lager never stopped me in the past , but there’s only one man you have named who retained his EF whilst on castration level HT. Maybe I’ll be number two. Here’s hoping. I’m ready for it

If life gives you lemons , then make lemonade

User

Posted 27 May 2018 at 17:22

Lager? I didn’t realise you were a footballer

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

User

Posted 27 May 2018 at 17:43

Hi Chris,

Sorry to read about that decision. You've worked so hard at your recovery and you have done so well.

You mention sending a begging letter? If it were me, I'd consider sending a letter outlining the business case for you to be continue being prescribed.

I dont know who "they" are? Or what evidence they have to suggest that the medication is of little or no use? If yliu find that evidence you may be able to refute it as meaningless in your case?

For example, if "they" say 90% of men don't benefit, or it's of no benefit in 90% of cases, you could point out that you are obviously in the 10% that does benefit. If you have ever stopped talking the tablets, for whatever reason, and suffered a negative impact you could use that to demonstrate that there is a need for them?

And you could consider mentioning the increased costs likely to be incurred later in of other treatments, pumps, inserts, gadgets if your recovery is interrupted at this critical stage.

Happy to help drafting something for you if you wish?

atb

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 27 May 2018 at 17:53

Thank you Lyn— no not a footballer. A Northerm boy who drank Boddingtons then found himself abroad in the Merchant Navy for 7 years where bitter simply didn’t exist!! So I got the taste. I like a cider and Guiness occasionally ( not mixed ).

Dave thanks for your message. It’s the South West NHS area that have done the research and claiming not enough evidence of daily dose and that the money could be used elsewhere. I’m not going to dispute that as the NHS is massively stretched. My GP may come up trumps after my email. He’s very good to me normally. Thank you for your offer. I’m opening the red now !

If life gives you lemons , then make lemonade

User

Posted 06 Jun 2018 at 09:55

If life gives you lemons , then make lemonade

User

Posted 06 Jun 2018 at 10:46

Great news Chris - so pleased for you. I thought I was already having a good as the bike flew through it's MOT this morning, it's a glorious day and now your news as well.

All the best

Kevan

User

Posted 06 Jun 2018 at 15:59

Enjoy!!

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

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