Type three c

C

Cornetlady

Member
Relationship to Diabetes
Type 3c
So I was urgently referred to the gastroenterologist in February and following up on elastase test and put on creon. Still waiting for an appointment for pancreatic insufficiency diagnosis. I have no symptoms and the creon gives me all the symptoms plus itchy skin headaches dizziness runny nose sore throat and stomach pain that has now stopped me playing in my brass band. Sugar levels have crept back up and not coming down with increased back ground insulin . Been in bed ill and not eaten much so not had the creon. All the symptoms have gone away no pain and sugar levels dropping. My Gp says he can’t help as knows nothing about it. I have energy and feel so much better off the creon. I have read that a secondary test should be carried out before being prescribed creon to confirm Epi. On top of this I have an allergy to pork and was told by dr there was no need to worry. Now isn’t creon made out of pork. Any way I have stopped taking it and I am trying to get a Gp appointment to discuss but can’t get one until December!
 
Cornetlady said:
So I was urgently referred to the gastroenterologist in February and following up on elastase test and put on creon. Still waiting for an appointment for pancreatic insufficiency diagnosis. I have no symptoms and the creon gives me all the symptoms plus itchy skin headaches dizziness runny nose sore throat and stomach pain that has now stopped me playing in my brass band. Sugar levels have crept back up and not coming down with increased back ground insulin . Been in bed ill and not eaten much so not had the creon. All the symptoms have gone away no pain and sugar levels dropping. My Gp says he can’t help as knows nothing about it. I have energy and feel so much better off the creon. I have read that a secondary test should be carried out before being prescribed creon to confirm Epi. On top of this I have an allergy to pork and was told by dr there was no need to worry. Now isn’t creon made out of pork. Any way I have stopped taking it and I am trying to get a Gp appointment to discuss but can’t get one until December!
Click to expand...
The information on the Creon website mentions telling your doctor if you have allergy to pork or pig products.
www.creoninfo.com

CREON® (pancrelipase) Delayed-Release Capsules

Official CREON website for patients. Learn more now.
www.creoninfo.com www.creoninfo.com
 
Sorry to hear you’ve been feeling so rough while taking the Creon @Cornetlady

It’s not something I use, but I’ve read experiences of others who have fairly serious gastric upset where their supply of creon is interrupted.

So you have loose or greasy / floating stools when not taking creon?
 
everydayupsanddowns said:
Sorry to hear you’ve been feeling so rough while taking the Creon @Cornetlady

It’s not something I use, but I’ve read experiences of others who have fairly serious gastric upset where their supply of creon is interrupted.

So you have loose or greasy / floating stools when not taking creon?
Click to expand...
No, loose or floating stools, un digested food no pancreatitis or stomach pain before diagnosis.
 
The link attached above does state that all PERT medications contain pork extracts. However it mentions 3 types and there were 4 on the NHS prescribing lists.

I suggest @Cornetlady you ask a Pharmacist to tell you if there is an alternative PERT that might work for YOU. If this seems a bit strange and you think such advice would be best coming from your GP my experience is that a GP will look such things up, whereas a good Pharmacist will just know what options exist and be one step ahead of a GP. But the Pharmacist will NOT change what your GP has prescribed and will place the onus on you to go back to your GP to discuss alternatives; you are just better informed and better placed to encourage your GP to think laterally. Assuming your Pharmacist has a useful suggestion!
 
Sooo sorry, be strong..
fyi… an endoscopic ultrasound, or an MRCP with secretin are good tests to help diagnose what kind of shape your pancreas is in.
 
Cornetlady said:
So I was urgently referred to the gastroenterologist in February and following up on elastase test and put on creon. Still waiting for an appointment for pancreatic insufficiency diagnosis. I have no symptoms and the creon gives me all the symptoms plus itchy skin headaches dizziness runny nose sore throat and stomach pain that has now stopped me playing in my brass band. Sugar levels have crept back up and not coming down with increased back ground insulin . Been in bed ill and not eaten much so not had the creon. All the symptoms have gone away no pain and sugar levels dropping. My Gp says he can’t help as knows nothing about it. I have energy and feel so much better off the creon. I have read that a secondary test should be carried out before being prescribed creon to confirm Epi. On top of this I have an allergy to pork and was told by dr there was no need to worry. Now isn’t creon made out of pork. Any way I have stopped taking it and I am trying to get a Gp appointment to discuss but can’t get one until December!
Click to expand...

Was diagnosed with EPI back in 2018, they did ask for two stool samples to confirm diagnosis as my first elastase level was on low side but not particularly bad, so perhaps caught things earlier than some.

As far as I'm aware it's not common to get side effects from Creon, but by sounds of things you obviously do by what you've explained above.

Sure if you rang your GP surgery you could at least get a telephone appointment to speak with a Dr, when doing so explain about your experience taking Creon & ask them to put you on a 14 day referral to see a Gastroenterologists more urgently to discuss your options.

Usual symptoms of EPI are greasy floating stools, upset bowels & stomach plus weight loss, didn't experience weight loss myself but as I said earlier maybe we caught things earlier before things got worse, just maybe your in same position @Cornetlady but a second stool sample would confirm this. I'm no Dr just speaking from own experience & after reading experiences of others on forum who take Creon.

Not aware there's a non porcine alternative to Creon but Gastro would be able to advise.
 
Er, isn't that more than a bit tricky should the patient follow the Muslim faith?

I know there are medical exemptions eg during Ramadan, not being rigidly obliged to fast for such a long period should your (confirmed) medical condition demand that you eat.
 
Proud to be erratic said:
The link attached above does state that all PERT medications contain pork extracts. However it mentions 3 types and there were 4 on the NHS prescribing lists.

I suggest @Cornetlady you ask a Pharmacist to tell you if there is an alternative PERT that might work for YOU.
Click to expand...

Hope you able to find an alternative that you can use @Cornetlady
 
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