Who deals with repeat prescription?

User

Posted 24 Jul 2023 at 12:35

Hi, its been almost three months since i had my prostate removed, when i had my catheter removed the nurse handed me a prescription of Tadalafil 20mg (one tablet twice a week). I am almost out of these tablet now, does anyone know who is responsible for repeat prescriptions? I've tried the hospital but they have not responded, my GP doesn't seem interested as said it down to the consultant.

I did get an appointment for the men's health clinic but that got cancelled and I'm still waiting for a new date, i suppose aftercare will be dealt by then but in the mean time I'd like the drugs even though they haven't helped yet!

PS, I had my op at Lister Stevenage

User

Posted 24 Jul 2023 at 13:39

My Andrology nurse specialist sent details to GP who now prescribes Tadalafil on a repeat prescription.

Hope this helps.

User

Posted 24 Jul 2023 at 15:05

Hi, I had the same problem with the same hospital, and my GP.. after-care fell off a cliff, but I put that down to the start of lockdowns.

I ended up buying it privately until it was resolved. I now make a point at every consultation, of asking my surgeon to request a repeat prescription of tadalafil whenever he writes to my GP. Could you contact the surgeon's secretary about a letter to your GP?

I would also recommend you fill out a request for a Medical Exemption Certificate at your GP surgery (if you haven't already).

P.S. a new nurse specialist took over the role around 18 months ago, can't name names on here but if you get him, he's brilliant!

Good luck.

Kev.

Edited by member 24 Jul 2023 at 15:08 | Reason: Added note

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User

Posted 24 Jul 2023 at 13:39

My Andrology nurse specialist sent details to GP who now prescribes Tadalafil on a repeat prescription.

Hope this helps.

User

Posted 24 Jul 2023 at 14:44

Thanks Jason, I've not had my first appointment with the specialist nurse yet, no idea how long that will take, I was given Tadalfil straight after catheter removal. I've spoken to a different GP's reception person today who seemed a little more clued up.

Feel a bit on my own regarding the aftercare, I'm hoping the specialist nurse will give an appointment soon as I could do with some help for ED.

User

Posted 24 Jul 2023 at 15:05

Hi, I had the same problem with the same hospital, and my GP.. after-care fell off a cliff, but I put that down to the start of lockdowns.

I would also recommend you fill out a request for a Medical Exemption Certificate at your GP surgery (if you haven't already).

P.S. a new nurse specialist took over the role around 18 months ago, can't name names on here but if you get him, he's brilliant!

Good luck.

Kev.

Edited by member 24 Jul 2023 at 15:08 | Reason: Added note

User

Posted 24 Jul 2023 at 15:59

Originally Posted by: Online Community Member

Hi, I had the same problem with the same hospital, and my GP.. after-care fell off a cliff, but I put that down to the start of lockdowns.

I would also recommend you fill out a request for a Medical Exemption Certificate at your GP surgery (if you haven't already).

P.S. a new nurse specialist took over the role around 18 months ago, can't name names on here but if you get him, he's brilliant!

Good luck.

Kev.

Thanks Kev for the reply, it's good to know someone relatively local, I live just the other side of Hitchin.

Pre Op I found Lister very good, the main surgeons seem very well regarded and are main players using Neurosafe. I had the Prof if that's not giving away too much info. Early days for me, but I was dry from the catheter removal, ED is certainly a problem, I know 3 months it's to be expected but I would have thought some movement even now but not even a twitch.

I had one side nerves spared, what about you? I'm still very confused regarding "Margins" I thought one side must have been positive when using neurosafe hence nerves removed, however 6 week Path report said Margins clear??? It sound like Neuosafe have lower tolerance.

Done the medical exemption form, Nurse appointment was Hartford but that got cancelled. I struggled with getting PSA results as well, but as mention Macmillian nurse (who I only saw to once to get formally diagnosed) I might try her again.

User

Posted 24 Jul 2023 at 16:34

Hospital after care zero. Was supposed to be referred to ED clinic nada.

PSA Test. I ring my local urology dept so that a request for a PSA can be put on the system. I only do this to get past the receptionist at my GP so I can get a Nurses appointment. The Nurse can never find the PSA test requests but just does one anyway and results appear on my health record on my NHS app in a couple of days at most.

ED clinic managed to get a referral through my DR.

User

Posted 24 Jul 2023 at 16:37

Guessing he took one of your nerve bundles due to proximity of the cancer. He saved both of mine, although he had to burn tissue in the posterior zone, I still ended up with a positive margin though.

I usually phone the Macmillan nurse at lister for PSA results, leave a message with your hospital number etc and they call back within a couple of hours.

Good news being dry day one, me too. ED wise.. be prepared for the long haul, it took me eight months for things to get going again, three and a half years on and it's working pretty well now.

It's early days and you've got a long road ahead so don't get disheartened, definitely do your pelvic floor exercises daily.

Good luck.

Kev.

User

Posted 24 Jul 2023 at 17:34

Thanks Jim, Kev.

Yep rapidly finding out aftercare not as good, at my follow up appointment I was expecting to see my surgeon but it was some locum who unsurprisingly wasn’t that familiar with my case, not sure if in the future I will see my actual surgeon as the two main guys are busy doing’s procedures which I do fully understand.

Yes my tumour was very close to the edge so probably why nerves removed, I was told originally I was T3 after scan, surgeon said T2. My histology report mentioned positive margins but in the conclusion said margins clear, Pt2c GS 7 (3+4). My understanding was that T2 meant contained within the prostate capsule, however I read that some T2 patients have positive margins which I don’t see how if contained within the capsule. Obviously I’m not understanding things correctly!

Kev, with regards to ED, I’m trying to stay positive but with only one side saved I’m not too confident. You’ve done well to keep both sides and things getting back to normal, I read even those with both sides saved can struggle so good result for you, I’ve not found anyone who’s mentions success with only one side hence the negativity!

Interesting you mentioned kegals, with the pack from Stevenage it mentions doing kegals after the surgery, no mention of it before. As I was dry I never did any kegals at all?? Do they help with ED or just help control leakage, if they do I better start!

User

Posted 24 Jul 2023 at 19:32

Originally Posted by: Online Community Member

Thanks Jim, Kev.

Kev, with regards to ED, I’m trying to stay positive but with only one side saved I’m not too confident. You’ve done well to keep both sides and things getting back to normal, I read even those with both sides saved can struggle so good result for you, I’ve not found anyone who’s mentions success with only one side hence the negativity!

Interesting you mentioned kegals, with the pack from Stevenage it mentions doing kegals after the surgery, no mention of it before. As I was dry I never did any kegals at all?? Do they help with ED or just help control leakage, if they do I better start!

Pretty sure there are members on here who have recovered function with one nerve bundle, hopefully they'll see this and comment.

Pelvic floor exercises are important for urinary continence, I do them frequently because I don't want to go backwards.

As for ED, I think it's important to to keep intimacy going so the little fella is getting stimulated while the nerves repair. Tadalafil is important for improving blood flow to help in this process.

My wife bought a cheap pump off the Internet while I was waiting for ED appointments. Essential rehab for penile health.

If you're still struggling with Ed after a few months, try injections, it gets you back in the game and a lot of guys on here (me included) swear by them.

User

Posted 24 Jul 2023 at 19:35

Glover. I think the lack of aftercare is pretty much widespread and you have to learn to be proactive in asking for it. I asked my GP about getting Tadalafil after the op but he would only prescribe Viagra. They gave me headaches so I spoke to the GP again and he said they would prescribe me Tadalafil if he received an instruction from my care team at the hospital. I contacted the CNS specialist who wrote a letter to the surgery. I now have them on repeat prescription (2 x 20 mg per week). I think it would be worth trying to get in touch with your CNS.

User

Posted 24 Jul 2023 at 20:33

I think I must be lucky in having a reasonable GP surgery. The CNS wrote to him once saying prescribe MUSE, or anything else which might work, so that's what he does. MUSE is never available, but I have experimented and found avanafil works. I can just ask for a PSA test whenever I want (usually six monthly), I asked for testosterone test just post HT, no problems. I hear so many stories in hear of obstructive GPs, I assume it is something to do with budgets.

Dave

User

Posted 24 Jul 2023 at 21:21

I got the senior nurse who dealt with my case at the hospital, to write to my GP with the Tadalafil request - it was put on my repeat prescription & is still there now. I do find it can give you heartburn - but it does help in the dept it is needed in!!
half a 5mg tablet every other day is what I have. Mind you, my GP surgery, is pretty disorganised & is staffed mainly by locums & Nurse Practitioners. You have only to ask for something to be added to your repeat list - & it's done! Such is the NHS in 2023.

User

Posted 25 Jul 2023 at 08:24

All PDE5 inhibitors can cause heart burn/acid reflux because the lower esophageal sphincter also uses PDE5 to contract. Usually, this only happens if you were susceptible to acid reflux anyway. In the case of Tadalafil, the two standard doses are the 5mg daily low dose for continuous dosing, and the 20mg event dose (which is also often used 2x per week for continuous dosing). Both are available as half doses (2.5mg and 10mg) in case the full doses cause unacceptable side effects. Snapping the tablets to get half doses might not stop acid reflux because it breaks the film coating and directly exposes the esophagus to the PDE5 inhibitor as you swallow it.

Long term acid reflux is not a good idea, as it is a cause of esophageal cancer.

User

Posted 25 Jul 2023 at 15:25

Thanks everyone, I’ve just looked at my NHS app it looks like a repeat prescription has been added, they checked the letters from the consultants and could see that it had been prescribed. They did try to make a fuss and say the letter only mentions it was prescribed but not for how long or repeat required. I told the receptionist that unfortunately these tables won’t fix things in 3 months and the doctor should know it’s a long term thing, luckily they he agreed!

Know idea when I get my ED clinic appointment, next fight on my hands I suppose. I might just try a cheap pump to start with.

Does anyone who had one nerve bundle saved have normal erections, however long it took?? I’m thinking there must be a reason they save one side, if there was no benefit then surely it would be better to remove both as less chance of leaving something behind, some logic to that?

User

Posted 25 Jul 2023 at 16:43

In terms of erectile function, men who have one side saved do almost as well as men who had both sides saved. It is very difficult to predict - you can have full nerve sparing but never have an erection again or only partial nerve sparing and regain full function. There is something about surgeon skill, something about willingness to try to resolve it and a lot of luck / fortune

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

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