Creon 25k shortage

[eggyg]

Fellow Creonistas. Just read on the Pancreatic Cancer website that there will be a temporary shortage of Creon 25k. This could last until the end of May. 10k will still be available. May be worth getting in touch ( if you’re able) with your GP re this. I take 150k per meal, that’s a lot of tablets. Luckily they’re not as big!

Temporary shortage of Creon (Pancreatin) 25k | Pancreatic Cancer Awareness | PCA

Mylan, the company that produce Creon for the UK, have warned of a temporary shortage of Creon 25k over the coming weeks.

pancreaticcanceraction.org

 

[trophywench]

Ooh no - not again. Always the 25k ones!

 

[eggyg]

Ooh no - not again. Always the 25k ones!

It was the 40s last time. I already take 6 at a time, now it’ll be 15! The biggest problem is, the GP has to change your prescription or I’ll only get the amount prescribed which at the moment is 5/6 per meal, I only upped that a couple of months ago. I’ll be ordering them on a daily basis soon!

 

[trophywench]

Sorry! - knew it was 'big' ones.

Tedious in the extreme Elaine, you would think in this day and age pharmacies should be able to supply the requisite amount of a drug in smaller tablets as & when necessary. Eg I use 6g Doxasozin hence have both 4g and 2g tablets. If they can't get any 4g, I could have 3 boxes of 2g instead of one. I do have a brain so would just take 3 of em and get the same dose, but they can't guarantee that anyone has or would, but how B. annoying to have our health controlled by the lowest common denominator !

 

[Hepato-pancreato]

I have just put my script in on monday. I get 560 tablets per 28 days. Thanks for the heads up eggyg.

 

[eggyg]

I have just put my script in on monday. I get 560 tablets per 28 days. Thanks for the heads up eggyg.

I currently get 600 per 28 days of the 25ks. Due my next batch next week but I’m going to call pharmacy today to see if they have the 25ks in, otherwise I will need to somehow get in touch with the GP surgery to change prescription as 25 isn’t divisible by 10. Had the same problem when they stopped the 40s. Took ages for them to sort it. Don’t think anyone had a calculator! 😉

 

[mikeyB]

I don’t need to take quite that much, but then I still have my shabby pancreas present, so the max I need to take is around 50k, depending on the food. I tend to avoid high fat meals, anyway, so I’m quite happy with multiples of 10k.

For non-Creonistas reading, Creon isn’t a drug. It’s replacement digestive enzymes that are absent due to a damaged or absent pancreas. It’s extract of pig pancreas. Which is ironic, really, when you take Creon with a streaky bacon butty.🙄

 

[eggyg]

I’ve spoken to my pharmacy today. They had no idea about this. They have 400 on their shelves which they’ll put away for me. Let’s see what happens when they try and get the other 200!

 

[eggyg]

I don’t need to take quite that much, but then I still have my shabby pancreas present, so the max I need to take is around 50k, depending on the food. I tend to avoid high fat meals, anyway, so I’m quite happy with multiples of 10k.

For non-Creonistas reading, Creon isn’t a drug. It’s replacement digestive enzymes that are absent due to a damaged or absent pancreas. It’s extract of pig pancreas. Which is ironic, really, when you take Creon with a streaky bacon butty.🙄

I love a bacon sarnie and even though I grill my bacon I still need at least 150k of Creon! Can’t take less than 100k these days even for something not fatty! Have I ever told you I’m a martyr to my bowels!

 

[mikeyB]

Aye, and it bears repeating too. Not many folk know the effects of no pancreas. I’d had enough with my bowels with Ulcerative Colitis before my pancreas went tits up. Fortunately, the UC is quiet and one effect of the PLS, my neuro condition, is bowel sluggishness, so I can titrate Creon against that!

Every cloud...

 

[nonethewiser]

400 arrived today from Dalston Pharmacy, ordered thru gp surgery on Monday.

Take 4 25k for each meal, keeps things steady & no issues of late, have condition EPI.

 

[eggyg]

400 arrived today from Dalston Pharmacy, ordered thru gp surgery on Monday.

Take 4 25k for each meal, keeps things steady & no issues of late, have condition EPI.

I use Dalston Pharmacy, they are excellent. You must live in the Carlisle area. I said above I get 600 a month I don’t, I get 400, don’t know where the 600 came from! I walked round for mine earlier on and they have ordered 800 x 25k today so obviously still some in stock. I don’t know if that’s two months worth for me or someone else gets them. Which is good, I really don’t relish taking 15 of the little blighters with each meal, I’ll have no room for my tea! 🙂 PS my pharmacy just orders mine automatically each month for me, so I don’t have to think about it. The only things I order ad hoc are insulin, needles and cassettes for my metre.

 

[nonethewiser]

I use Dalston Pharmacy, they are excellent. You must live in the Carlisle area. I said above I get 600 a month I don’t, I get 400, don’t know where the 600 came from! I walked round for mine earlier on and they have ordered 800 x 25k today so obviously still some in stock. I don’t know if that’s two months worth for me or someone else gets them. Which is good, I really don’t relish taking 15 of the little blighters with each meal, I’ll have no room for my tea! 🙂 PS my pharmacy just orders mine automatically each month for me, so I don’t have to think about it. The only things I order ad hoc are insulin, needles and cassettes for my metre.

In Carlisle, north side.

Have to order mine thru gp surgery via patient access, only prescription item on automatic renewal is bp med. all other items have to request.

Dalston pharmacy best in area, tried all others & nowt compares for service.

 

[eggyg]

In Carlisle, north side.

Have to order mine thru gp surgery via patient access, only prescription item on automatic renewal is bp med. all other items have to request.

Dalston pharmacy best in area, tried all others & nowt compares for service.

Ah over the river, the posh end! I’m south Carlisle, right on the outskirts. I agree about Dalston pharmacy, they manage to retain their staff and we’re on first name terms with them all. Nothing is every any trouble to them.

 

[martindt1606]

I'm currently taking at least 30 * 25000 per day. Am considering asking MDT at Christies to recommend an alternate as taking 23 * 10000 with a meal is not really an option. Its bad enough staring a meal after everyone else whilst sorting out the bolus if i'm taking 23 pills as well I'll be finishing a very cold meal 30 minutes after everyone has left the table. Struggling to see the situation improving with African Swine Virus making in roads into the Polish Pig Farms and also reported in Germany. Also and currently ignored by British main stream media the situation in Germany with CORVID-19 may not be as good as we keep been told. Hidden away in a small post on BBC Sport was a small report saying the restart of football may be delayed as cases appeared to be rising and more stingent lockdown could be enforced. Both would potentially impact CREON supplies in UK. Also having used CREON for 16 years probably time for a change anyway.

 

[trophywench]

I wasn't aware there even was a substitute for them?

 

[eggyg]

I wasn't aware there even was a substitute for them?

I suppose there has to be as not everyone can ( allergy) or wants ( religion) to take a pork product. Interesting thought.

 

[eggyg]

I'm currently taking at least 30 * 25000 per day. Am considering asking MDT at Christies to recommend an alternate as taking 23 * 10000 with a meal is not really an option. Its bad enough staring a meal after everyone else whilst sorting out the bolus if i'm taking 23 pills as well I'll be finishing a very cold meal 30 minutes after everyone has left the table. Struggling to see the situation improving with African Swine Virus making in roads into the Polish Pig Farms and also reported in Germany. Also and currently ignored by British main stream media the situation in Germany with CORVID-19 may not be as good as we keep been told. Hidden away in a small post on BBC Sport was a small report saying the restart of football may be delayed as cases appeared to be rising and more stingent lockdown could be enforced. Both would potentially impact CREON supplies in UK. Also having used CREON for 16 years probably time for a change anyway.

Gosh Martin! 23! By the way, way back in 2010 you were the first one to comment on my first post. I had had a distal pancreatectomy and was, now I know, wrongly diagnosed with Type 2, I was lost and confused and didn’t know anyone else like me. You made me feel as if I wasn’t on my own so thank you for that. Back to the Creon. I’m lucky in the fact I will “only” need to take 15 of the 10Ks. I didn’t realise it was a pig problem that was causing the shortage, like when they stopped the 40Ks, I can’t understand how they can produce the 10Ks still, we will still be using the same amount but in smaller capsules? What alternatives are there? Elaine.

 

[martindt1606]

I wasn't aware there even was a substitute for them?

I'm a member of a group for Neuroendocrine Cancer. On a quarterly basis we have a small gathering / Natter. One of the ladies attending said that after the withdrawal of the 40000 capsule she was switched to Nutrizym 22 by the oncology team at The Christie. NICE also list Pancrease HL as an option. All 3 have the same 3 ingredients with slight unit variations so may not be straight swaps. For example Pancrease HL has slightly more of all 3 ingredients. My next appointment (also) at THe Christie is in 2 weeks time and I think in my case it could be worth discussing a change with the oncology team. After 17 years on Creon my dosage is increasing quite regularly, so a change to something that appears slightly different/stronger may help.

 

[martindt1606]

Gosh Martin! 23! By the way, way back in 2010 you were the first one to comment on my first post. I had had a distal pancreatectomy and was, now I know, wrongly diagnosed with Type 2, I was lost and confused and didn’t know anyone else like me. You made me feel as if I wasn’t on my own so thank you for that. Back to the Creon. I’m lucky in the fact I will “only” need to take 15 of the 10Ks. I didn’t realise it was a pig problem that was causing the shortage, like when they stopped the 40Ks, I can’t understand how they can produce the 10Ks still, we will still be using the same amount but in smaller capsules? What alternatives are there? Elaine.

Hi Elaine, way back in 2010 I would have been on Creon for 7 years but a Diabetic novice. Became insulin dependent on 6 May 2010 following my pancreatectomy. Someone I met at a Neuroendocrine meeting said she was switched to Nutrizym 22 following the last shortage. I've put this on my list of things to discuss when i see my oncology team in 2 weeks. Good to see that we are both here 10 years on. I think I'll start using the Forum more often going forward. I sort of lost touch having picked up a big program to manage at work and only returned to the Diabetes UK site to see how to go about registering to raise donations under the 2.6 Charity Appeal (to celebrate my 10 year anniversary of pancreatectomy and start of life on insulin). Once on the web site I had a look around and surprisingly found my profile and password were still active. Will look to be more active going forward.