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User
Posted 12 Jul 2023 at 17:43

Is there anything that’s available out there? MUSE was prescribed but couldn’t get get a single item on prescription. Makers still have no idea when it will be available. Then prescribed Caverject but that’s unavailable so managed to get a box of Viridal Duo. Now that is unavailable too. I don’t have any options left now so the last six months have been wasted and my next clinic appointment is not till September.

 

Rob

User
Posted 13 Jul 2023 at 17:37

Lyn

It’s not that they can’t prescribe it but my GPs have previous for refusing to adequately take on the prescribing role from the Urology clinic. So, for instance, when I was prescribed MUSE the prescription request was for one dose. That’s all they were prepared to prescribe. I asked if that meant I would have to request a repeat prescription every week and they wouldn’t answer me, only to say ‘that’s what the request is, if you wish to vary it go back to the clinic and request it from them.’ The nurse was not amused, and sadly not surprised, when I told her. ‘That is not the agreement’, she said. ‘They are meant to take on the management of your case after my referral.’

I shall see what happens!

 

Rob

User
Posted 13 Jul 2023 at 20:04

They’ll do the repeat, it’s the variance they pull a face at. Quite what they do if it’s a drug for a life-threatening condition I have no idea!

I may be doing them a dis-service, but it’s the rigmarole of trying to get an appointment, even on the phone, explaining it and then trying to get them to change things. 

I’m still awaiting a callback from the makers of Viridal, their customer service promised a return cal so 🤞

User
Posted 27 Oct 2023 at 14:16

The caverject powder is just a cheap NHS version of caverject in the fancy injectors. It works just fine you just end up with your bedroom looking like a junkie has been sleeping there as you use standard syringes that have to be disposed of in a sharps box.

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User
Posted 12 Jul 2023 at 19:32
There are currently no problems getting invicorp (although there was a shortage for a while last year)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jul 2023 at 23:30

Cheers Lynn, but Invicorp was not one of the options listed by my urology nurse and I know precisely what my GPs will say if I mention it, “Go back to her.”

User
Posted 13 Jul 2023 at 00:19

It is so frustrating that different Trusts vary so much. But realistically, how can they refuse you Invicorp when Caverject, Muse & Viridal are unavailable?

Have you had a look at your Trust policy document on ED treatments for men with prostate cancer? Assuming you are under Herefordshire & Worcestershire ICB, have a look at page 176 - it doesn't say anywhere that Invicorp can't be prescribed. https://herefordshireandworcestershireccg.nhs.uk/about-us/corporate/publication-scheme/foi-disclosure-logs/2020-21-2/april-2020-1/herefordshire-ccg/136-herefordshire-treatments-policy-and-appendices-june-2019-final-version-8-9/file 

Edited by member 13 Jul 2023 at 00:27  | Reason: Not specified

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

User
Posted 13 Jul 2023 at 17:37

Lyn

It’s not that they can’t prescribe it but my GPs have previous for refusing to adequately take on the prescribing role from the Urology clinic. So, for instance, when I was prescribed MUSE the prescription request was for one dose. That’s all they were prepared to prescribe. I asked if that meant I would have to request a repeat prescription every week and they wouldn’t answer me, only to say ‘that’s what the request is, if you wish to vary it go back to the clinic and request it from them.’ The nurse was not amused, and sadly not surprised, when I told her. ‘That is not the agreement’, she said. ‘They are meant to take on the management of your case after my referral.’

I shall see what happens!

 

Rob

User
Posted 13 Jul 2023 at 19:52

Hi Subbuteo,

I may have completely misunderstood the situation, so apologies if I have.

It sounds like the original referral for E.D. treatments did not say "and repeat as necessary".  Can the original prescriber be asked to amend their recommendation to cover several options (Muse, Caverject, Viridal etc. "as available") AND "repeat".

Good luck with it.

JedSee.

User
Posted 13 Jul 2023 at 20:04

They’ll do the repeat, it’s the variance they pull a face at. Quite what they do if it’s a drug for a life-threatening condition I have no idea!

I may be doing them a dis-service, but it’s the rigmarole of trying to get an appointment, even on the phone, explaining it and then trying to get them to change things. 

I’m still awaiting a callback from the makers of Viridal, their customer service promised a return cal so 🤞

User
Posted 17 Oct 2023 at 12:09

I’m in the same position. I was prescribed Viridal 20 & managed to get one prescription. When I put in for a repeat prescription I was told it was unavailable my GP changed to Viridal 40 & I adjusted the dose myself. I was then told this is now unavailable. I was then given a prescription for Carvajet which was the alternative on my hospital letter. That’s unavailable. I haven’t got an appointment with my ED until December. It really is very frustrating 

User
Posted 17 Oct 2023 at 23:08

I haven’t been able to get anything for over a month and the manufacturer is not responding to me. My next clinic appointment is also December 🤬

Frustrating is not the word.

 

Rob

User
Posted 18 Oct 2023 at 20:45

I've read on this forum znd and the Prostate Cancer Support Page about the nightmare of a supply issue of Injections. 

I have been using Viridal Duo since March 23 and so far have had no supply issues, I live in the North West near Chester and I am with a Independent Pharmacy so maybe there suppliers are different to the big name suppliers. 

User
Posted 18 Oct 2023 at 21:16

I must be lucky.  6 months after having a non nerve sparing prostatectomy I had an appointment at my ED clinic.

On that first visit the nurse supervised a  Caverject jab. Not a sausage! (excuse the pun) But she contacted my GP who prescribed Invicorp and much to my delight it worked. I've now got it on repeat prescription 5 phials a month.

As yet there have been no problems with supply.

User
Posted 26 Oct 2023 at 13:51

I went into Boots in Worcester to ask, she didn’t even have to consult the computer. No Viridal is available and nor are any of the alternatives.  The manufacturer has told them it will be 2024 before any is delivered.

User
Posted 26 Oct 2023 at 20:19

Hi Subbuteo 27,

I've also been told that Viridal Duo is unavailable until at least Jan. 2024.  I've been offered Caverject powder which apparently I will need to mix myself (?!).  I haven't received it yet.  This should be 'interesting'.

I asked about Invicorp, but the GP said that I would need a referral from the Urologist or E.D. Clinic for that (?), so to avoid further delay, I've accepted the Caverject powder for now.

Best wishes,

JedSee.

User
Posted 27 Oct 2023 at 11:33

Hi Subbuteo 27, I have a clinic next week to try Invicorp injections after I had a fearsome bad reaction to Vitaros cream. The lovely specialist nurse said it was available in the hospital pharmacy and would probably be easier to get hold of from pharmacies in the community.

User
Posted 27 Oct 2023 at 14:16

The caverject powder is just a cheap NHS version of caverject in the fancy injectors. It works just fine you just end up with your bedroom looking like a junkie has been sleeping there as you use standard syringes that have to be disposed of in a sharps box.

User
Posted 27 Oct 2023 at 21:11

Thanks francij1,

That's good to know 😀.

Best wishes,

JedSee.

User
Posted 28 Oct 2023 at 21:28
John has just collected 2 boxes of Invicorp without any problems.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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