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Alprostadil (Muse) availability

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User
Posted 11 Jun 2024 at 17:10

Hi everybody.

Following a prostatectomy in 2018 (with partial nerve sparing) and pelvic radiotherapy in 2019, which included the prostate bed, I've been struggling to regain some form of erection. In the meantime I've been using a pump in an effort to keep the tissues within my penis healthy.

Having used Tadadfil for a few years (both 5 mg per day and 20 mg a few times a week) I've finally given up on that, and not wishing to go as far as injections or even surgery, was hoping to try Alprostadil, as a pellet (Muse), or perhaps as a cream (Vitaros).

The problem is that there seems to be a major supply issue with Muse. Having got a private prescription from my GP I've been phoning local pharmacies, but no-one seems to be able to get it, or say when it would be available.

Has anyone had any success in getting some? 

Thanks for any pointers you may have.

User
Posted 15 Jun 2024 at 14:47

Hi everybody

Thanks for your replies.

Having had the situation re-Muse supply confirmed by searching the web once again, and realising that any chinks of light are probably counterfeit products and therefore risky, I'm reconsidering!

I've had some responses from upping my previous Tadalafil doseage from 5mg/day to 20 mg, 3 times a week (for 8 tablets only). I was cheered by experiencing a 'moderate' erection, which was fantastic to see and feel. Not enough to do anything with, but the first one in several years, which was really great. It's clear that my (RT) damaged nerves have repaired to some degree.

In the meantime, I've asked my GP to switch my prescription from Muse to Vitaros cream.

I'm keen to explore all the conservative approaches before making the big decision (for me, anyway) of gritting my teeth and trying out the injections.  

Thanks again

User
Posted 17 Jun 2024 at 11:03

Yes, when 'he got in there', my surgeon judged that it would be safe to spare the nerves on one side of my prostate as there was no evidence of cancer on that side. This meant that I experienced a slow return of my erectile function over the next six months. However, I then needed more treatment, one of which was radiotherapy, which knocked me back again.

Never one to despair, I've been trying to do everything I can since my discharge in the summer of 2020 to restore as much function as I can: regular pelvic floor exercises and use of a vacuum device, then also 20 mg tadalafil a few times a week, then 5 mg per day (for about 2 yrs).  I've now switched back to the 20 mg regime as a last ditch effort (essentially a 'look-see') prior to trying something more - alprostadil in some form.

It's been a tough mental ride as my libido is definitely good at times, though not at others. My testosterone is now 25 (normal range 8-29), which I feel explains my more noticeable anger at times. Not like my old self at all. The mental side of all this probably has more impact that we all realise, both positively and negatively.

User
Posted 12 Jun 2024 at 19:09

D, I used the muse pellets for a number of years,in hindsight I wish I had took up the offer if the injections straight away. I eventually went onto the injections and they were more effective and more reliable. I have had a wobble about sticking a needle in my penis,but the thought is far worse than the action it is quite strange I anticipated that is was going to hurt but it didn't. I used an injection in the last few days and it worked well and seeing that almost full size penis was also mentally satisfying.

Unfortunately some injections are in short supply.

Thanks Chris 

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User
Posted 11 Jun 2024 at 19:21

All the Alprostadil products cycle through periods of being unavailable. It's about time someone else manufactured them.

User
Posted 11 Jun 2024 at 19:36
Thanks. This latest period of unavailability seems to have been over several years, from what I've been able to find out.
User
Posted 11 Jun 2024 at 21:11

Hi D_Cymro,

Have you considered the Alprostadil injections?  I know it doesn't sound very appealing to stab a needle into your penis, but sometimes 'needs must'.

One good thing about the injections is that you can increase the dose if a lower dose is ineffective.  I had to increase to the max. (40mcg.) to get a good effect, but it was well worth it. :-).

Also, have you considered asking for Invicorp injections?  It has fewer side effects than Alprostadil, but didn't work for me.

There are periodic shortages of most of these medications, so it might be a good idea to have more than one option in case one isn't available.

By the way, I would suggest that it might be a good idea to continue with the 5mg. of Tadalafil nightly, as it is my understanding that it can be working whilst you're asleep, even if you don't see any evidence of benefit.  And, of course, keep pumping.

Best wishes,

JedSee.

User
Posted 12 Jun 2024 at 12:11

The injections are really not that bad! It takes a little getting used to but has the desired affect once you have found the dose that suits you.

Give it a try.

dl

User
Posted 12 Jun 2024 at 19:09

D, I used the muse pellets for a number of years,in hindsight I wish I had took up the offer if the injections straight away. I eventually went onto the injections and they were more effective and more reliable. I have had a wobble about sticking a needle in my penis,but the thought is far worse than the action it is quite strange I anticipated that is was going to hurt but it didn't. I used an injection in the last few days and it worked well and seeing that almost full size penis was also mentally satisfying.

Unfortunately some injections are in short supply.

Thanks Chris 

User
Posted 15 Jun 2024 at 14:47

Hi everybody

Thanks for your replies.

Having had the situation re-Muse supply confirmed by searching the web once again, and realising that any chinks of light are probably counterfeit products and therefore risky, I'm reconsidering!

I've had some responses from upping my previous Tadalafil doseage from 5mg/day to 20 mg, 3 times a week (for 8 tablets only). I was cheered by experiencing a 'moderate' erection, which was fantastic to see and feel. Not enough to do anything with, but the first one in several years, which was really great. It's clear that my (RT) damaged nerves have repaired to some degree.

In the meantime, I've asked my GP to switch my prescription from Muse to Vitaros cream.

I'm keen to explore all the conservative approaches before making the big decision (for me, anyway) of gritting my teeth and trying out the injections.  

Thanks again

User
Posted 15 Jun 2024 at 23:39

Hi D-Cymro

I’m interested in what you suggest in your last post. When you say partial nerve sparing do you mean nerve sparing on one side of the prostate?

Also, are you saying where Tadalafil didn’t used to work it now does?

Thanks.

dl

User
Posted 17 Jun 2024 at 11:03

Yes, when 'he got in there', my surgeon judged that it would be safe to spare the nerves on one side of my prostate as there was no evidence of cancer on that side. This meant that I experienced a slow return of my erectile function over the next six months. However, I then needed more treatment, one of which was radiotherapy, which knocked me back again.

Never one to despair, I've been trying to do everything I can since my discharge in the summer of 2020 to restore as much function as I can: regular pelvic floor exercises and use of a vacuum device, then also 20 mg tadalafil a few times a week, then 5 mg per day (for about 2 yrs).  I've now switched back to the 20 mg regime as a last ditch effort (essentially a 'look-see') prior to trying something more - alprostadil in some form.

It's been a tough mental ride as my libido is definitely good at times, though not at others. My testosterone is now 25 (normal range 8-29), which I feel explains my more noticeable anger at times. Not like my old self at all. The mental side of all this probably has more impact that we all realise, both positively and negatively.

User
Posted 21 Sep 2024 at 18:32
Sadly it seems Viatris announced they were giving up production of Muse (their interurethral suppository pellet of Alprostadil). -I much preferred using that to the injectibles. Alas no other firm seems to make an alternative suppository.

User
Posted 21 Sep 2024 at 18:50

Originally Posted by: Online Community Member
The injections are really not that bad!

Totally agree. I had to join the prick a dick club. Invicorp is very good. The injections are painless.

https://community.prostatecanceruk.org/posts/t29845-Hooray-for-Invicorp

 

Edited by member 21 Sep 2024 at 18:52  | Reason: Add link.

 
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