A Tale of Injection Woe, Continuing Woe.
Posted: Fri May 17, 2019 9:25 am
This is by way of my introduction to FT being only my second post, although I have been a "lurker" for getting on for two years or so. I have gained so much information and understanding from this site for which I am truly grateful - you have a wonderful site here Paul with people like your self, Larry, Sheep and Bldoink to name but a few, freely giving of their knowledge and experience.
My 'nom de plume' is Yorkie81 which signifies that I come from Yorkshire, the largest county in England, and the 81 stands for the number of years that I have lived here. I am married to my second wife - my first having died from MND (you call it ALS or Lou Gherig's disease in the US) at the age of 53. We were looking forward to a good retirement with much personal time together. It was not to be.
My ED started some time back. Being type 2 diabetic I could get National Health service (NHS) free meds so I latched on to Sildenafil Citrate and then Cialis, however NHS discontinued my Cialis - I think it was costing them too much as it was at that time still on license - so I returned to Sildenafil as by this time it was off license and the NHS could buy the generic version. I was allowed 8x100mg tabs. per month. However the efficacy started failing. I was tried with other iterations of PDE5I to no avail. The MUSE type pellets were tried - they didn't work at all. So I learned on FT about injections and in July 2017 (that's nearly 2 years ago) I asked my GP if I could try them. In September I was given approval and in December 2017 I saw the Uro and asked for injections - he gave me a VED instead. I have used that for therapy ever since - 20 mins. a day. As a result night time Es have returned as well morning wood.
During the whole of 2018 I persisted with my call for injections with my GP, the Uro's secretary and appointment clerk but I could not get an appointment - just promises - sometime in the future - you are on the list. It is now 2019 and finally I got an appointment for the end of April, duly kept. A 5am start, no "tests" carried out' lots of waiting around and the demo was carried out around midday using the Caverject Impulse. Note: here in the UK there is no bimix, trimix or quadmix approved or used by the NHS. Considering I had waited nearly two years for the demo it was woefully inadequate in that the preparation of the Caverject Impulse ready for injection use was not demonstrated. My Uro seemed in one mighty hurry to be away. He got me to do a second injection of a further 10mcg and I was not quick enough for him, he asked me why I hesitated and I said I was looking for veins. He said there were no major veins there, get it put in. The combination of the two injections (20mcg) lasted for 15 mins before it started to subside and at best was not nearly as hard as a VED. How hard can it get?
A report was sent to my GP to issue a script for Caverject 20mcg with provision to increase the dose in stages up to a maximum of 40mcg. Allowance is one per week. That was over three weeks ago and still no injections. So I asked the pharmacy what was the delay and they said that there was no Caverject in the country at this time and that the earliest date for new supplies was July. In the UK I gather a similar situation existed in 2018.
Conclusions:- This is how difficult it is, certainly for this person, to get injections under the NHS in the UK. A member of my family who works in the NHS says that they are under staffed and under funded - is that the cause?
In the UK there appears to be only one injection product available unlike elsewhere where there is a 'rival' to Caverject (Edex) but also Bimix, the ever popular Trimix and Quadmix.
On my demonstration injection day I realised after the event that I had experienced NO pain whatsoever during the insertion or the hours following - might this suggest that the dose at 20mcg total was too low?
So I ask, is Alprostadil powder on its own available, or has anyone any suggestions? or should I continue to be patient. The woe continueth!
My 'nom de plume' is Yorkie81 which signifies that I come from Yorkshire, the largest county in England, and the 81 stands for the number of years that I have lived here. I am married to my second wife - my first having died from MND (you call it ALS or Lou Gherig's disease in the US) at the age of 53. We were looking forward to a good retirement with much personal time together. It was not to be.
My ED started some time back. Being type 2 diabetic I could get National Health service (NHS) free meds so I latched on to Sildenafil Citrate and then Cialis, however NHS discontinued my Cialis - I think it was costing them too much as it was at that time still on license - so I returned to Sildenafil as by this time it was off license and the NHS could buy the generic version. I was allowed 8x100mg tabs. per month. However the efficacy started failing. I was tried with other iterations of PDE5I to no avail. The MUSE type pellets were tried - they didn't work at all. So I learned on FT about injections and in July 2017 (that's nearly 2 years ago) I asked my GP if I could try them. In September I was given approval and in December 2017 I saw the Uro and asked for injections - he gave me a VED instead. I have used that for therapy ever since - 20 mins. a day. As a result night time Es have returned as well morning wood.
During the whole of 2018 I persisted with my call for injections with my GP, the Uro's secretary and appointment clerk but I could not get an appointment - just promises - sometime in the future - you are on the list. It is now 2019 and finally I got an appointment for the end of April, duly kept. A 5am start, no "tests" carried out' lots of waiting around and the demo was carried out around midday using the Caverject Impulse. Note: here in the UK there is no bimix, trimix or quadmix approved or used by the NHS. Considering I had waited nearly two years for the demo it was woefully inadequate in that the preparation of the Caverject Impulse ready for injection use was not demonstrated. My Uro seemed in one mighty hurry to be away. He got me to do a second injection of a further 10mcg and I was not quick enough for him, he asked me why I hesitated and I said I was looking for veins. He said there were no major veins there, get it put in. The combination of the two injections (20mcg) lasted for 15 mins before it started to subside and at best was not nearly as hard as a VED. How hard can it get?
A report was sent to my GP to issue a script for Caverject 20mcg with provision to increase the dose in stages up to a maximum of 40mcg. Allowance is one per week. That was over three weeks ago and still no injections. So I asked the pharmacy what was the delay and they said that there was no Caverject in the country at this time and that the earliest date for new supplies was July. In the UK I gather a similar situation existed in 2018.
Conclusions:- This is how difficult it is, certainly for this person, to get injections under the NHS in the UK. A member of my family who works in the NHS says that they are under staffed and under funded - is that the cause?
In the UK there appears to be only one injection product available unlike elsewhere where there is a 'rival' to Caverject (Edex) but also Bimix, the ever popular Trimix and Quadmix.
On my demonstration injection day I realised after the event that I had experienced NO pain whatsoever during the insertion or the hours following - might this suggest that the dose at 20mcg total was too low?
So I ask, is Alprostadil powder on its own available, or has anyone any suggestions? or should I continue to be patient. The woe continueth!