Alflorex on prescription

[Rocky-Road]

Hi all,

I'm finding alflorex to be mildly helpful with my ibs but I really can't afford to buy it every month. Does anyone know if its possible to get it on prescription from a gp?

[grufjones]

Hi Rocky-road

I have not heard anyone else refer to it being on prescription in the UK. Unfortunately the NHS does not prioritise IBS that highly even though people can suffer greatly.

In the HU forums there are occasionally debates on the cost of getting better from IBS. I have looked at a bunch of things and tried the fodmap diet about 2 years back and have been significantly better since. The NHS only covers the dietitian support for fodmap in some regions. I paid about £100 for a private one. Seems a lot, but spread over a lifetime the best money I ever spent and better than taking any kind of pills each day

Dietary change does not make your grocery bill go up by the way. If anything it goes down as pre-lockdown at least you'll tend to prepare your own lunch rather than stop on the high street

Hope you find a long term solution that works for you

[Rocky-Road in reply to grufjones]

Thank you for the help

FODMAP didn't work for me and Ive cut out so many foods to try battle my symptoms, it's actually quite concerning.

I'm on the waiting list for a nhs dietitian but really starting to loose hope that anything will work

[oldfog in reply to grufjones]

I strongly disagree with your statement that dietary change doesn't make your grocery bill go up! The way I put it, you pay more than twice the price for half as much with most Gluten Free or Lactose free foods! A prime example is that a 550g loaf of Tesco Gluten Free white sliced bread costs £1.80 whilst a 800g loaf of ordinary Tesco white sliced bread costs just 59p. Then a 375g box of Tesco Choco Snaps costs 89p whilst a 300g box of Tesco Free From Choco Snaps costs £1.80. And the list goes on and on ad-infinitum!

[one-n-den]

Hi,

Alflorex is good, but I’m not sure that it’s any better than less expensive probiotics I’ve tried.

I had equally good results with Holland & Barrett’s Acidophilus, Just for Tummies Live Bacteria and Nature’s Best Acidophilus.

Currently weaned myself off all of them and taking one Colpermin capsule in a morning before breakfast.

Which reminds me - the best advice I got re probiotics was to take them first thing in the morning, on an empty stomach, with a glass of water. That’s when your stomach acid is at its weakest and the bacteria are most likely to survive to the gut.

I do still bear FODMAP in mind, but at least in lockdown the adverse effects of ‘high’ FODMAP foods don’t have such potential foe embarrassment!

Hope that helps.

[Rocky-Road in reply to one-n-den]

Ooh that's worth thinking about actually, thank you. Looks like a trip to Holland & Barrett is in order

[one-n-den in reply to Rocky-Road]

Yes, our local branch is open - but they do online as well.

You probably know there’s no need to pay full price at H&B - if they’re not having a ‘Penny Sale’, or a ‘Half Price Sale’ or a ‘3 for 2 Sale’ today, they will be by next week!

Good luck!

[xjrs]

I understand your position Rocky-Road. Alflorex is expensive. I did speak to Precision Biotics about this, but they said that the expense is to cover the cost of the clinical trials that they ran. Unfortunately probiotics are classified as 'food' rather than medicine, so won't be available on prescription. This is such a shame.

Anything that is prescribed needs to be passed by NICE. I think NICE has far too much emphasis on pharmaceuticals. Maybe it would be useful for groups like IBS Network charity to put pressure on NICE to expand what is available on prescription. In the case of Alflorex, this has already undergone clinical trials which would be a prerequisite for them.

When I'd mentioned Alflorex to my gastroenterlogist recently about how much benefit I was getting from it, he was very keen to know the name and wrote it down, presumably to investigate further and maybe to recommend to his patients. If people are suffering from an overgrowth of bad bugs which is causing their symptoms and Aflorex can help with this, there would be far less visits to GPs, hospitals, use of gastroenterlogy time etc. and fewer sick days which costs the economy. If Alflorex had been available and I knew about Alflorex more than 20 years ago, I wouldn't have had days lost from work due to IBS, visits to my GP about IBS, plus follow up colonoscopies and gastroenterlogy appointments over the years.

There can also be the issue with lack of awareness. For many people with IBS the only touch point they have about their IBS is with their health service. Many people don't go on forums such as this or search the internet to try to help themselves. They may not have the time to do this and might be just trying to cope with their day to day lives. They are reliant on what their GP tells them what to take. There is more out there to help than referral to a FODMAP trained dietitian (plus being low FODMAP long term isn't necessarily good for your health) plus other standard medication measures. In fact, I strongly believe that if I'd taken Alflorex first prior to seeing a FODMAP trained dietitian, I wouldn't have needed that referral and I wouldn't have been on such a restrictive diet for so long, which could have had knock on implications for my overall health.

In theory if people are prescribed Alflorex, there would be increase in manufacturing quantity resulting in economies of scale and reduced price to the NHS. Perhaps @IBSNetwork could conduct a cost benefit analysis on this and present it to NICE or at least to ask NICE to conduct their own research/trials to satisfy themselves of the benefits? Can we have a comment from @IBSNetwork administrator on this, please? I would be happy to assist in this regard if there is data available from Precision Biotics about cost implicating factors such as reduced number of GP visits, time off work etc. or a survey could be run? I have IBS-C and I am having to spend a lot of extra money on Alflorex, extra dietary measures, efficacious supplements etc. and other people will be doing the same. Managing the condition can become a financial burden. People have IBS through no fault of their own and others, without IBS wouldn't have these financial burdens.

The only thing I can suggest Rocky-Road is to buy the 3 pack of Alflorex which works out cheaper. However on the down side this means a lot of investment up front. When people are juggling their money month to month this may not be possible. Maybe also consider whether there is anything else you can cut back on to pay for something that is helping your health? Again I know this may be difficult.

On the up-side I am glad there is something that you have found some benefit from.