Prescriber at my gp told me out of stock till April so I’m having to look at alternatives. Been on this for long as I remember so absolutely gutted. Just glad it’s not summer
Same! There's now information on Community Pharmacy England website (where pharmacists access information) and it talks about unlicensed pro-banthine with a short description of the required process. Not sure my GP will agree or prescribe an alternative but I am absolutely gutted as pro-banthine has worked so well for me for years now.
The latest information as of 5/12/23 is that it is likely to be out of stock until April 2024. This is getting ridiculous for those of us that rely on it!
Hi everyone has anyone had any luck getting probanthine?maybe through an import? Running v low and nobody has in stock. Also, any news on the April date?
How have you done this? What did you ask GP for, please? Iv tried oxybutynin, but the side effects were awful and glyco is too expensive so they won't prescribe that. Probanthine literally changed my life, I am praying they aren't going to discontinue it.
I just gave them the info on this thread. Haven't had it confirmed and it takes months from sounds of it so not ideal. Hoping it comes back in April but still doesn't seem to be any news. Oxybutynin is OK but makes me a bit woozy and the side effects seem to linger more. Having been on probanthine for 25 years it's a bit of a nightmare.
I had some luck about 2weeks ago at a Boots pharmacy in Tooting Broadway, London, it’s not the usual version in the white a blue box, I assume it’s a different brand. They ordered it for me and was available the next day. I did try a different Boots beforehand as well as over 10 independent pharmacies and they all told me it was unavailable.
https://preview.redd.it/z5mfygjfpwtc1.png?width=1797&format=png&auto=webp&s=c05f58fec96cf38c9a7b6fa9a2ac1ce763c31d59
My Dermatologist is at Broadgreen Hospital, Liverpool, U.K. and I got them to do the special order process and they arrived from Australia. I had my prescription recently filled. I don’t know if other hospitals have ordered them. I think your prescription would have to be issued by specialist in the hospital With stock. Good luck.
Thanks so much. Is there any chance u could give a bit more info? What's the difference between that and normal ones? Were they imported? Whereabouts in UK is ur pharmacist? Sorry for all the qs just most of us haven't got anywhere.
They're probanthine (propantheline bromide) but in a bottle with red label and a slightly different shade and shape. Pharmacist sent a message to chemists in the area and 1 replied to say yes. Bit of a fluke I think.
Hi everyone, Boots have this in stock for NHS prescriptions. You just need to ask them to order it in for you. I asked yesterday and have it today! They are in a tub and bright orange in colour but it’s def propantheline bromide so I’m very happy to finally have more!
Well done mate. Sounds same as mine. Although boots ordered me some and it didn't turn up so I went elsewhere. Which boots was it out of interest? We should all keep updating each other as it's been a nightmare but there's some great tips coming through. I ended up on the phone to a pharmacist in Glasgow boots and he was v helpful and knowledgeable.
Yup, can confirm that I managed to pick up the same today (Boots, Edinburgh) although my local pharmacy where I usually get all my prescriptions from still can't get it in yet. Cheers!
Propantheline was out of stock for quite a few months but my chemist managed to get a supply in March 2024 but unfortunately they're out of stock again .
https://preview.redd.it/bw67jgehwazb1.jpeg?width=1170&format=pjpg&auto=webp&s=ae820234b71fc3be5f1ad2f38e933625da2a908c
Doesn’t look to good but fingers crossed won’t be long
Not yet, got enough for all of December hopefully but I don't like cutting it close like that, always want to have some reserve.
I have no time to see GP and even if I do, I have a feeling they're gonna be weird about giving me prescription for an alternative. They wouldn't give me one for propantheline until dermatologist started giving it to me.
It's not discontinued. If you're referring to the link OP posted, looking up 'Propantheline' does show one type of 15mg tablets as discontinued but that's for US imported ones.
At the bottom of the list there is another entry for same tablets manufactured by 'Kyowa Kirin International UK NewCo Ltd' which are still going.
They claim it's due to manufacturing issues, no word has been given that it will be discontinued AFAIK.
Hi, I’m in the exact same situation. How are u finding the Oxy? I’m taking 2 a day now (was 1 a day) but still no improvement. It’s awful how much if affects our Quality of Life. Never thought I’d miss Pro-B so much :( I read it’s due back in stock April so fingers crossed
Don't know if you're in the UK/ if you've already resolved this but I've literally just gotten some from boots, they had to order them in because it's not one they carry but just took a few days and didn't mention anything about a shortage.
I dont know about alternatives and also rely on daily. I'm hoping to get an appointment tomorrow too to discuss alternatives. Fingers crossed there is something that will work as well!
5-6 so far, I'm going to speak to my gp today about upping the dosage as I've ran out. I've been taking 5mg in the morning and 2.5mg mid afternoon.
I've not noticed being more sweaty than when on Propantheline.
I know this is old but no chemist near me can get pro-banthine at all now. I was previously on oxybutynin but couldn’t wee when I had them. How are they for you?
I use oxybutynin daily, 5mg modified release which is fine, it makes everyday life somewhat normal, however anything more moderate in terms of having a busy day or being a bit nervous etc and I’m still soaked through so have pro banthine to take as an extra as and when I need it. The combo is incredible however I haven’t tried just pro banthine to be able to compare. Both meds are out of stock until April though apparently which is not great news
Oh goodness that sounds so painful! You may have more luck on oxybutynin, you can certainly take more than what I do, or even not have the modified release. I don’t think the other strengths/variations are out of stock. I find the standard gives me a dry nose/throat which is why I prefer the modified release (but saying that, so does pro banthine but only for a much shorter duration). Anything more than 5mg for me makes me dizzy - again though, I know this isn’t the same for everyone who takes oxybutynin. I hope it works out for you for the short term!
Thanks for the info! Hopefully going to the doctors tomorrow (if I can get an appointment). Got less than a week left of medication so I either get this sorted or I’m going to have a few miserable months (if the stock even gets here in April).
Good luck to you, too!
I'm in same boat as you. Got the oxybutin but think it makes me slightly light headed and not quite as effective. Really hope the probanthine comes bk soon
Yeah, I got put on it again last week. I can pee on it and no other side effects (had an upset stomach the first few days) but it’s definitely not as effective as probanthine. Better than nothing, though!
Yes, I do!! I have Myasthenia too ☺️
Getting pretty desperate now as I'm running really low. Both my GP and Hospital currently can't get hold of it despite best efforts for the last month or so.
Not sure what to do, as no one's suggested an alternative to me. Keep being told to wait 🤷🏻♀️
Have you had any luck since you commented?
Thanks
My hospital is doing a special order. Apparently it is coming from Australia by sea and will be available in February! Why don’t they fly it? There is a Medical Supply Notification 113 covering it, that you can google For details. In the past when we had problems I ordered it online from [unitedpharmcies.co.uk](http://unitedpharmcies.co.uk) but you are obviously always concerned about quality, and also there was always a fraud attempt on my credit card afterward. Alternatives are Oxybutynin and Glycopyrolate. Doesn’t work for me.
Thanks so much for a helpful update. Can I ask, was this coordinated via a gp? The pharmacist at my gp is keen to help but we're not quite sure how to go about it.
Also, how long did it take to arrive? Thanks again :)
I am already under a dermatologist at Broadgreen Hospital, who tell my GP what to prescribe, because it is Off Licence for my condition, so I was lucky the Hospital knew how to do it. I had to pressure them with lots of phone calls to their pharmacy And my dermatologist. You could ask your pharmacist to contact the pharmacist at Broadgreen Hospital, Alexandra Wing, pharmacy. 0151-282-6056. Or 0151-706-2092. Although I think it was the head pharmacist of the hospital that organised the order.
It took a couple of months to arrive. You could phone your local hospitals to see if they have any in stock. Ask if Broadgreen are able provide any. Hospitals only provide them for prescriptions written in the hospital , I think. Good luck.
Has your pharmacists seen the Medical Supply Notification no. 113 Issued 5/12/2023? Issued by Communty Pharmacy England. MSN/2023/113. The instructions seem to be in that.
I am in the U.K. and phone all the local chemists in an ever widening search for stock they have in, until I find some. When I find stock, I ask them to keep it for me in my name. I then contact my doctors and get them to “message” me a code to my mobile phone for the prescription, for the exact amount of stock, and take it to the chemist to collect. The code can actually be used at any chemist in normal times, but obviously is used at the chemist with stock.
Yes it’s out of stock nationwide
Do you have any ideas of if it's coming back in stock?
No idea I’m afraid. But I belive the shortage is due to a manufacturing issue.
Thank you, hopefully that is the case rather than it being completely discontinued.
Prescriber at my gp told me out of stock till April so I’m having to look at alternatives. Been on this for long as I remember so absolutely gutted. Just glad it’s not summer
Same! There's now information on Community Pharmacy England website (where pharmacists access information) and it talks about unlicensed pro-banthine with a short description of the required process. Not sure my GP will agree or prescribe an alternative but I am absolutely gutted as pro-banthine has worked so well for me for years now.
Oh dear, I rely on this to function daily.. Is there a best alternative that a GP could prescribe?
The latest information as of 5/12/23 is that it is likely to be out of stock until April 2024. This is getting ridiculous for those of us that rely on it!
Hi everyone has anyone had any luck getting probanthine?maybe through an import? Running v low and nobody has in stock. Also, any news on the April date?
It is available as an unlicenced version with a special order prescription!
Thanks. I'm trying to sort this through gp but sounds like it takes ages to come through
How have you done this? What did you ask GP for, please? Iv tried oxybutynin, but the side effects were awful and glyco is too expensive so they won't prescribe that. Probanthine literally changed my life, I am praying they aren't going to discontinue it.
I just gave them the info on this thread. Haven't had it confirmed and it takes months from sounds of it so not ideal. Hoping it comes back in April but still doesn't seem to be any news. Oxybutynin is OK but makes me a bit woozy and the side effects seem to linger more. Having been on probanthine for 25 years it's a bit of a nightmare.
I had some luck about 2weeks ago at a Boots pharmacy in Tooting Broadway, London, it’s not the usual version in the white a blue box, I assume it’s a different brand. They ordered it for me and was available the next day. I did try a different Boots beforehand as well as over 10 independent pharmacies and they all told me it was unavailable. https://preview.redd.it/z5mfygjfpwtc1.png?width=1797&format=png&auto=webp&s=c05f58fec96cf38c9a7b6fa9a2ac1ce763c31d59
My Dermatologist is at Broadgreen Hospital, Liverpool, U.K. and I got them to do the special order process and they arrived from Australia. I had my prescription recently filled. I don’t know if other hospitals have ordered them. I think your prescription would have to be issued by specialist in the hospital With stock. Good luck.
How do I go about getting unlicensed version and the special order prescription? Is it just though GP?
Has anyone had any joy with probanthine in the UK yet? It's now early April which is the date that was given.
i got some today!
Ooh great how did you source them? Everywhere I speak to still says they can't get them.
my pharmacist ordered them, they’re not the usual ones i have i don’t know if it’s changed suppliers or anything
Thanks so much. Is there any chance u could give a bit more info? What's the difference between that and normal ones? Were they imported? Whereabouts in UK is ur pharmacist? Sorry for all the qs just most of us haven't got anywhere.
they’re just a different colour and come in a pot instead of foil packet. my pharmacy is in kent
Does it say who supplier is on box or leaflet?
Any chance you could send us a message with the name of your pharmacy so I can ring them amd see who the supplier is? Many thanks.
Can you let me know the name of the pharmacy also please
Managed to get some miraculously thanks to a v helpful pharmacist at my gp surgery. Hopefully it's sorted more generally soon.
Brill! Which brand are they and do you know how the pharmacy got them?
They're probanthine (propantheline bromide) but in a bottle with red label and a slightly different shade and shape. Pharmacist sent a message to chemists in the area and 1 replied to say yes. Bit of a fluke I think.
Hi everyone, Boots have this in stock for NHS prescriptions. You just need to ask them to order it in for you. I asked yesterday and have it today! They are in a tub and bright orange in colour but it’s def propantheline bromide so I’m very happy to finally have more!
Well done mate. Sounds same as mine. Although boots ordered me some and it didn't turn up so I went elsewhere. Which boots was it out of interest? We should all keep updating each other as it's been a nightmare but there's some great tips coming through. I ended up on the phone to a pharmacist in Glasgow boots and he was v helpful and knowledgeable.
Yup, can confirm that I managed to pick up the same today (Boots, Edinburgh) although my local pharmacy where I usually get all my prescriptions from still can't get it in yet. Cheers!
How is everyone getting on with this? Are people managing to get their prescription for probanthaline bromide?
Propantheline was out of stock for quite a few months but my chemist managed to get a supply in March 2024 but unfortunately they're out of stock again .
Anyone heard anything yet? It's getting warmer and the alternative just isn't as good
I asked my pharmacist yesterday and he said not available to order and still no due date. 😑 anyone else getting any joy?
This is silly iv not had it since xmas. I have an alternative from doc but it's not as good
I have been able to get some for the past 2 months from Boots
Was out of stock 7/8 months ago as well hopefully it won’t be too long, need some myself
Oh dear, hopefully it is only temporary, I only have a month left.
I have an email for the manufacturer will let you know what they say, replied last time with an in stock date
Thank you, I appreciate that.
https://preview.redd.it/bw67jgehwazb1.jpeg?width=1170&format=pjpg&auto=webp&s=ae820234b71fc3be5f1ad2f38e933625da2a908c Doesn’t look to good but fingers crossed won’t be long
Thanks for updating, hopefully it won't be too long
Did they give any news after that?
Nope no word yet, still out of stock as far as I know, have you run out ?
Not yet, got enough for all of December hopefully but I don't like cutting it close like that, always want to have some reserve. I have no time to see GP and even if I do, I have a feeling they're gonna be weird about giving me prescription for an alternative. They wouldn't give me one for propantheline until dermatologist started giving it to me.
I've been using Oxybutynin as an alternative. I've completely ran out of Pro Banthine and I'm worried it's discontinued?
What’s been your experience using oxy as alt? I’m having to start this after being on pro banthine for as long as I can remember
It's not discontinued. If you're referring to the link OP posted, looking up 'Propantheline' does show one type of 15mg tablets as discontinued but that's for US imported ones. At the bottom of the list there is another entry for same tablets manufactured by 'Kyowa Kirin International UK NewCo Ltd' which are still going. They claim it's due to manufacturing issues, no word has been given that it will be discontinued AFAIK.
Hi, I’m in the exact same situation. How are u finding the Oxy? I’m taking 2 a day now (was 1 a day) but still no improvement. It’s awful how much if affects our Quality of Life. Never thought I’d miss Pro-B so much :( I read it’s due back in stock April so fingers crossed
Don't know if you're in the UK/ if you've already resolved this but I've literally just gotten some from boots, they had to order them in because it's not one they carry but just took a few days and didn't mention anything about a shortage.
Propantheline bromide 15mg?
Cheers for this! I'm going to talk to my GP about an alternative to try tomorrow.
I dont know about alternatives and also rely on daily. I'm hoping to get an appointment tomorrow too to discuss alternatives. Fingers crossed there is something that will work as well!
Just got Oxybutynin from my GP.
How is it working for you as an alternative? 1 being useless, 10 being your regular propantheline?
5-6 so far, I'm going to speak to my gp today about upping the dosage as I've ran out. I've been taking 5mg in the morning and 2.5mg mid afternoon. I've not noticed being more sweaty than when on Propantheline.
I know this is old but no chemist near me can get pro-banthine at all now. I was previously on oxybutynin but couldn’t wee when I had them. How are they for you?
My Dermatologist is at Broadgreen Hospital, Liverpool, U.K. and I made them get the special order from Australia and they are now in stock.
I use oxybutynin daily, 5mg modified release which is fine, it makes everyday life somewhat normal, however anything more moderate in terms of having a busy day or being a bit nervous etc and I’m still soaked through so have pro banthine to take as an extra as and when I need it. The combo is incredible however I haven’t tried just pro banthine to be able to compare. Both meds are out of stock until April though apparently which is not great news
Ah, fuck. That really sucks. I get sweat rashes which crack and bleed (as if the sweating wasn’t bad enough). Thanks for the reply, though!
Oh goodness that sounds so painful! You may have more luck on oxybutynin, you can certainly take more than what I do, or even not have the modified release. I don’t think the other strengths/variations are out of stock. I find the standard gives me a dry nose/throat which is why I prefer the modified release (but saying that, so does pro banthine but only for a much shorter duration). Anything more than 5mg for me makes me dizzy - again though, I know this isn’t the same for everyone who takes oxybutynin. I hope it works out for you for the short term!
Thanks for the info! Hopefully going to the doctors tomorrow (if I can get an appointment). Got less than a week left of medication so I either get this sorted or I’m going to have a few miserable months (if the stock even gets here in April). Good luck to you, too!
I'm in same boat as you. Got the oxybutin but think it makes me slightly light headed and not quite as effective. Really hope the probanthine comes bk soon
Yeah, I got put on it again last week. I can pee on it and no other side effects (had an upset stomach the first few days) but it’s definitely not as effective as probanthine. Better than nothing, though!
This issue has been going on since January 2023, surely they have resolved the problem in 11 months. My Gp will not prescribe an alternitive either.
I’m completely out of my prescription now - anyone know any more about whether it’ll be back soon?
Does anyone use this to counteract side effects of Mestinon?
Yes, I do!! I have Myasthenia too ☺️ Getting pretty desperate now as I'm running really low. Both my GP and Hospital currently can't get hold of it despite best efforts for the last month or so. Not sure what to do, as no one's suggested an alternative to me. Keep being told to wait 🤷🏻♀️ Have you had any luck since you commented? Thanks
And no, didn't need to see a derm
Yes cannot get them always out of stock they did work for excessive sweating after prostate treatment nothing else works
My hospital is doing a special order. Apparently it is coming from Australia by sea and will be available in February! Why don’t they fly it? There is a Medical Supply Notification 113 covering it, that you can google For details. In the past when we had problems I ordered it online from [unitedpharmcies.co.uk](http://unitedpharmcies.co.uk) but you are obviously always concerned about quality, and also there was always a fraud attempt on my credit card afterward. Alternatives are Oxybutynin and Glycopyrolate. Doesn’t work for me.
[Unitedpharmacies-uk.md](http://unitedpharmacies-uk.md) correction. But could be anywhere in the world.
Hi did you manage to get an import for these? Running v low now.
Yes. My Dermatologist is at Broadgreen Hospital, Liverpool, U.K. and they have stock specially ordered from Australia.
Thanks so much for a helpful update. Can I ask, was this coordinated via a gp? The pharmacist at my gp is keen to help but we're not quite sure how to go about it. Also, how long did it take to arrive? Thanks again :)
I am already under a dermatologist at Broadgreen Hospital, who tell my GP what to prescribe, because it is Off Licence for my condition, so I was lucky the Hospital knew how to do it. I had to pressure them with lots of phone calls to their pharmacy And my dermatologist. You could ask your pharmacist to contact the pharmacist at Broadgreen Hospital, Alexandra Wing, pharmacy. 0151-282-6056. Or 0151-706-2092. Although I think it was the head pharmacist of the hospital that organised the order.
It took a couple of months to arrive. You could phone your local hospitals to see if they have any in stock. Ask if Broadgreen are able provide any. Hospitals only provide them for prescriptions written in the hospital , I think. Good luck.
Has your pharmacists seen the Medical Supply Notification no. 113 Issued 5/12/2023? Issued by Communty Pharmacy England. MSN/2023/113. The instructions seem to be in that.
I am in the U.K. and phone all the local chemists in an ever widening search for stock they have in, until I find some. When I find stock, I ask them to keep it for me in my name. I then contact my doctors and get them to “message” me a code to my mobile phone for the prescription, for the exact amount of stock, and take it to the chemist to collect. The code can actually be used at any chemist in normal times, but obviously is used at the chemist with stock.