20mg Tadalafil

User

Posted 16 Dec 2022 at 21:47

Hi all,

My RALP was on 14.09.22, the surgeon spared both nerve bundles (god bless him). No movements ‘down there’ as yet (not surprised).

I’ve just collected 14 x 20mg Tadalafil tablets to be taken every other day - with repeat prescription - and have a few questions:

1. will I be exempt from prescription charges?

2. Is it better to take them in the evenings, due to possible side effects?

3. What effects can I expect on my penis and sexual activity?

4. what side effects are common?

Thanks everyone. Grateful for responses as always,

Nick

User

Posted 17 Dec 2022 at 07:20

As above with extras :-

20mg doses are quite severe. They can cause indigestion , watering eyes , headache , and in some men lots of back and joint pain. They will only give you an erection if you are fully into what you are doing. That is , you have to be turned on properly. I had to wait a year before they prescribed me the gold standard of 5mg Tadalafil daily. I took it at night to reduce side effects. They gave me a PPI ant-acid to sort the indigestion out. Within 2 weeks little Chris was warm again and waking up with semi wood. Over my second and third years I returned to full penetrative function albeit using a simple cock ring and the daily meds. I used a pump 3 or 4 times a week for rehab. Good luck

User

Posted 16 Dec 2022 at 22:41

You are exempt prescription charges but need to apply for exemption. Get the form from GP. It lasts 5 years then need to reply. As you have had a cancer diagnosis this qualifies you for the exemption on all medication not just cancer medication. Form is FP92A.

Best to read the leaflet that comes with the medication regarding common side effects.

Good Luck

User

Posted 17 Dec 2022 at 02:44

Just adding to Jason's comment. The exemption lasts for five years and covers all medicine prescriptions whether related to cancer or not. However it will only be renewed if you need medication for cancer treatment, or to cope with the side effects of that treatment (tadadafil is to cope with the side effects of your treatment).

I am on repeat Avanafil, my medical exemption runs out in April 23 (can't believe it's nearly five years since diagnosis). I am not expecting any problems getting it renewed, but I shall report here if there are any problems.

I wouldn't be surprised if pensioners lose the free prescriptions in the next few years, but I don't think it would look good for a politician to take that benefit away from cancer patients. I know a lot of people on this forum are pensioners, so just a heads up, if the rules do change.

Dave

User

Posted 17 Dec 2022 at 07:40

I had RALP in March (full nerve sparing on one side, partial on the other) and have been on daily 5mg Tadalafil since May. Do read the leaflet, but I seem to remember it saying try to be consistent in the time of day you take them. Initially I had some muscle aches and a headache (which I think are common side effects), but that soon faded and now I have no side effects.

My wife and I are now able to have full penetrative sex without injections, rings or other artificial aids at the time. I would say my erection has now recovered to about 70% of what it was pre-operation.

I have been using a vacuum pump pretty much daily and would recommend that as part of penile rehabilitation. Even a cheap pump from someone like Love Honey will do the trick.

To be honest, my position 9 months post-operation is much better than I expected it to be, but it's clear this varies a lot between individuals and I count myself as one of the lucky ones.

User

Posted 17 Dec 2022 at 09:34

Just reading this post , I'm 2 weeks behind Nick with op and I've just received my pump and 8 20mg tadalafil tablets to take 2 a week . Took my first tablet on Wednesday evening,went out for a few pints on Thursday afternoon got home at 8pm then started with cold sweats and shakes was up all night rough yesterday managed to walk the dog then spent the rest of the day in bed with the shakes and headache, I know I should have read about the side effects anyone had something similar or I'm hoping I've caught a bug , taking my next tablet tomorrow so hoping it doesn't happen again

Edited by member 17 Dec 2022 at 09:35 | Reason: Not specified

User

Posted 17 Dec 2022 at 09:46

I need to challenge my GP with regards to the prescription of any of the Viagra derivatives. The surgeon said they no long prescribed low dose Cialis or Tadalafil post surgery; my GP prescribed 8 Sildenafil, but not on repeat. I suspect my trust has made a decision to not fund such treatment as part of normal post-op recovery.

Edited by member 17 Dec 2022 at 09:51 | Reason: Not specified

User

Posted 17 Dec 2022 at 10:24

Tadalifil, even at 5mg, gave me very sharp and painful reflux. Nothing helped and so I gave up on it.

User

Posted 17 Dec 2022 at 11:50

Jim, it’s the postcode lottery in action again. Good luck!

User

Posted 17 Dec 2022 at 11:53

Paul, I hope I can get to your stage by 9 months. It’s very easy to fear the worst isn’t it? I remember I couldn’t see past the incontinence immediately after the catheter came out but it improved quite quickly. Fingers crossed.

User

Posted 19 Dec 2022 at 19:14

Hi Nick.

Yes, aching limbs are quite a common side effect of Tadalafil. I had it for the first 4 or 5 times, but never get it now, so it might be worth persevering.

Good luck.

Jed.

User

Posted 14 Jul 2023 at 12:47

Thanks Guys,

I have carried on with the 20mg after my follow up call from the Pharmacist. The side effects have eased somewhat. It was great to hear how other users were getting on. This forum has been really useful and is invaluable when you are unsure about something.

Thanks

Rob

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User

Posted 16 Dec 2022 at 22:41

Best to read the leaflet that comes with the medication regarding common side effects.

Good Luck

User

Posted 17 Dec 2022 at 02:44

Dave

User

Posted 17 Dec 2022 at 07:20

As above with extras :-

User

Posted 17 Dec 2022 at 07:40

I have been using a vacuum pump pretty much daily and would recommend that as part of penile rehabilitation. Even a cheap pump from someone like Love Honey will do the trick.

To be honest, my position 9 months post-operation is much better than I expected it to be, but it's clear this varies a lot between individuals and I count myself as one of the lucky ones.

User

Posted 17 Dec 2022 at 09:34

Edited by member 17 Dec 2022 at 09:35 | Reason: Not specified

User

Posted 17 Dec 2022 at 09:46

Edited by member 17 Dec 2022 at 09:51 | Reason: Not specified

User

Posted 17 Dec 2022 at 10:24

Tadalifil, even at 5mg, gave me very sharp and painful reflux. Nothing helped and so I gave up on it.

User

Posted 17 Dec 2022 at 11:48

Biggy, in the nicest possible way I hope you got the flu. There’s a lot of it about. I had the first tablet last night, nothing to report this morning but I guess the effect is cumulative?

User

Posted 17 Dec 2022 at 11:50

Jim, it’s the postcode lottery in action again. Good luck!

User

Posted 17 Dec 2022 at 11:53

User

Posted 19 Dec 2022 at 14:38

Well I took the second of my 20mg tablets last night about 10pm and was awake from 0130 to 0400 with aching legs. It wore off after a couple of ibuprofen. Anyone else had that?

Nick

User

Posted 19 Dec 2022 at 17:10

Was about to reply to your post earlier, I'm on 10mg not 20mg also took my 2nd last night I had a dull ache in left leg also my whole body felt itchy and bed was soaked with sweat. Don't think it was still flu symptoms but will wait until I take next tablet to see how I react if no different I will contact my urology nurse

User

Posted 19 Dec 2022 at 17:51

Hi Biggy, sounds like a plan. I didn’t have the sweats or shakes but the aches are coming back now. Waiting for dinner to have a couple more ibuprofen. Can’t wait till they wear off…!

User

Posted 19 Dec 2022 at 18:04

Nick, I'm going to take my next tablet in the morning rather than night. Nothing is going to happen on the erectile side so if I get side effects might aswell have them in the daytime.

I was also wondering how each region work out medication

I'm on 10mg twice a week and you say you are on 20mg every other day

User

Posted 19 Dec 2022 at 18:08

That’s what I thought but I take mine at 10pm and the aches are coming on strong again now, 6pm, 20 hrs later. Also work/driving might be tricky. Let us know how it goes.

I wonder about the dosage too. 20mg every other day does sound more than others but I think it’s still within the limits on the instructions.

User

Posted 19 Dec 2022 at 19:14

Hi Nick.

Yes, aching limbs are quite a common side effect of Tadalafil. I had it for the first 4 or 5 times, but never get it now, so it might be worth persevering.

Good luck.

Jed.

User

Posted 19 Dec 2022 at 19:55

Thanks Jed, that’s good to know. I’ll stick with it.

Cheers

User

Posted 07 Feb 2023 at 22:12

Well the aches cleared up pretty quickly but I now get diarrhoea quite regularly in the late afternoon. It’s not listed as a side effect on the info sheet so I wondered if anyone else gets it?

User

Posted 08 Feb 2023 at 00:08

Never heard of diarrhoea linked to tadalafil - have you ever had irritable bowel syndrome/ upset stomach when anxious? Are you feeling worried / sad / under pressure?

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

User

Posted 08 Feb 2023 at 08:41

Ah, I’ve narrowed it down to omeprazole that I’m taking for reflux. Thanks anyway Lyn

User

Posted 22 Feb 2023 at 23:12

I stopped taking my 5mg daily tadalafil after nine days because of the awful reflux. My CNS expressed surprise that I was a) given a prescription for it and b) actually received it because our CCG has decided it’s not cost effective!

Rob

User

Posted 23 Jun 2023 at 12:20

Had my RALP in March '23. Results are good with PSA now <0.01 and all resection margins were negative. Now been prescribed Tadalfil 20mg on repeat prescription to be taken on alternate days. Haven't taken yet because not sure of the best time to take them? Some of the side effects sound scary. Does it help and any advice?

Rob

User

Posted 23 Jun 2023 at 13:37

That's a higher dose than people usually manage to get.

You could start by trying one tablet and wait a few days to see if you get any side effects. Most people don't.

Ideal time would be an hour before trying for an erection.

The other effect is that it's a blood pressure reducing medication, and if you have oter blood pressure reducing medications, take them at different times. The other common one would be Tamsulosin, but having had a prostatectomy, you shouldn't be on Tamsulosin.

User

Posted 23 Jun 2023 at 13:49

Thanks. That's a good idea. My consultant said not to expect too much for a while. What surprises me is the disparity across the NHS Trusts in practices and prescribing.

Rob

User

Posted 23 Jun 2023 at 16:21

Hi Rob

I started on 20mg every other day. First couple of weeks I got leg aches but they disappeared. However I did have the runs, particularly in the afternoons - not great at work or for the walk to the train station at the end of the day! I developed reflux too (still have it now and again) for which my GP prescribed omeprazole - I came off that after a couple of weeks as it wasn’t helping and can play havoc with your gut biome.

I also found that if I didn’t manage my repeat prescriptions properly and there was a gap of a week or so, then those initial side effects would return or get worse. So I learnt to get on top of that!

About 6 weeks ago I’d had enough so GP moved me to 10mg every other day. The runs cleared up, job done.

In terms of ED, I haven’t had any success yet, although I don’t use pumps or anything else. Surgery was 14.09.22 so 9 months - which is the earliest the surgeon said to expect any change. Maybe tonight’s the night?!

So probably best to stick with it because as you know everyone is different and it may work a treat for you.

good luck, hope you get the result you want

Nick

User

Posted 10 Jul 2023 at 07:54

Hi all, been taking 20mg Tadalafil every other day but am getting horrible backache and pains down left leg. I took ninth tablet today and hoping side effects wear off soon. Wonder if 10mg every other day might be better? It all seems such a lottery.

Rob

User

Posted 10 Jul 2023 at 09:18

Rob, sorry to hear you’re in pain. Mine wore off after about 2 weeks, maybe yours will go soon.

User

Posted 10 Jul 2023 at 13:48

I too take 20mg every other day and have done for 12 months.. No side effects to report. Well, apart from the obvious one. Lol.

User

Posted 10 Jul 2023 at 21:04

Hi Robard,

I had muscle ache in legs and back for the first few times I used 20mg Tadalafil, but it quickly wore off. Hope it will for you too.

Take good care of yourself.

JedSee.

User

Posted 14 Jul 2023 at 12:47

Thanks Guys,

Thanks

Rob

User

Posted 16 Jul 2023 at 08:43

Rob, I hope the side effects continue to improve. Agreed about the forum, it’s a great place to fill in the detail that you don’t get from clinicians.

Cheers

Nick

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