I am posting the same thing in the osteoporosis forum and the stoma forum at the suggestion of my friend.
My mum has had a stoma for over 50 years and is also on osteoporosis medication. Her doctor has suggested she moves to Denosumab which contains sorbitol and is a twice yearly injection.
She thinks she may have a sorbitol intolerance and particularly with her stoma (she has had everything removed) she has no large intestine to absorb it and is worried how it may affect her.
Has anyone got experience of this medication plus a stoma? I know this may be a long shot!
Thanks in advance
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Florrie2
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Not an answer to your question, but do you know why her doctor has suggested denosumab? Has he explained that if she needs to stop it, it's essential to go straight onto a bisphosphonate like Alendronic Acid tablets or Zolendronic Acid infusion? Even without the concern about sorbitol, she needs to research Prolia thoroughly before agreeing to go on it.
Yes it has been explained to her, thank you. She is also an intense researcher and I think she probably knows more about it than the doctor she saw! She can't seem to get an answer on the sorbital from the Osteoporosis Society, the stoma nurses, the doctor or the pharmacist - they all say lots of people have it with no issues.
The twice yearly injections would suit her for lots of reasons. She has been on the bisphonsponates for a few years but they have always concerned her with the stoma.
It isn’t available where she lives. Her other options are Teriparatide (Forsteo) - daily self injections, or Romosozumab (Evenity) - monthly self injections but can only have it for a year.
Sorry just checked - it was about lack of access to Fracture Liaison Services but based on it being a postcode lottery. At least she has access but all through the doctor and only specific treatments
That was more to do with fracture liaison services. I thought ZA was available to everyone, subject to a rheumatologist 's agreement, throughout the UK. Maybe Scotland is different? If your Mum is concerned about AA and can't have ZA, what options would there be if she stops denosumab? As far as I know, only those two are suitable relay drugs.
I presume she’d go back onto the biophospate tablets or have to have the self injections. The added complication is having a stoma which brings all of its own daily challenges and having an osteoporosis medication that won’t make that worse or add further daily complications. She has no-one to help.
I have not had any experience of having a Stoma but I do have multiple intolerances.
I too suspected Sorbitol was a culprit for some of my symptoms but a senior consultant assured me it was not.
It appears you have not been given all the information to make a decision on treatment for your mum.
The huge benefit of the Osteoporosis treatments given by injection is that they bypass all the stomach, if it is only an intolerance and not an allergy the chances are it will not affect her.
This is only my option from my own knowledge and experience I am not medically qualified.
Perhaps speaking to your mothers consultant would put her mind at ease.
Denosumab can be continued for life, Teraparatide used to be given for 2 years ( not sure how long now) Romosozumab is for 1 year ( this is a new treatment which is known to give exceptionally good results.
Your Mother has been given a good number of options which reflects her need for them.
Not everyone will be given these options so it seems she is getting really good care.
If you can't get answers from any healthcare professionals where you live, would you consider calling AmGen, the maker of Prolia? I had a very good experience doing that. They do have a medical advisor.
As an update, they said their patient leaflet doesn’t cover stomas and the ABPI code of practice prevents them discussing anything other than licence information. They suggested she spoke with the doctor or pharmacist instead who could contact them for off licence information.
No experience of stoma and Denosumab but experience of stoma and Zoledronic acid infusion.(ZA) I have an ileostomy.
I had 2 years of Terrosa a teriparatide injections and just had first of 3 annual ZA infusions (December) to lock in the gains.
I don't know how your mum has managed to take tablet form of bisphosphonates as they need to be taken with a full large glass of water. My experience of drinking a large glass of water with a stoma/ileostomy is that it quickly goes straight through and into the bag.
I don't know if you will get anywhere with asking the manufacturer as I contacted the ZA manufacturer and they told me to ask my doctor to write to them with my concerns.
Has your mum had any fractures? if so that would up her fracture risk and mean eligible for Teriparatide or Evenity.
If you need any other info please let me know.
Please look at the following link about prescribing. Had to tell the GP!! although it doesn't mention drinking large amounts of water.
Thanks. She came up with a plan on how to take the tablets and has managed to do so. They said she had to try those first. She has several fractures and has been offered those other two. She has weighed up all the options, risks and benefits and came up with the denosumab as the one that suited the best - apart from the sorbitol question.
I thought it didn’t hurt to ask just in case there was someone with the same experience.
Hi. Just to finish this off, my mum discovered that her covid jabs had the same amount of sorbitol as the Prolia and she wasn’t affected by those so she has her first injection booked. Thanks to everyone as you helped me give her additional information for her decision.
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