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Not sure what to do

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AJLang

AJLang

Well-Known Member
Relationship to Diabetes
Type 1
I had a diabetic gastroparesis specialist who I last saw in Spring 2012. I was due to see her in January this year but then found that she had left. My diabetic consultant said that she would find me another gastroparesis specialist but they couldn't find one so I said to leave it for the moment as the gastroparesis is under reasonable control with the combination of erythromycin and domperidone. I had to look at the patient information leaflet because of a potential side effect - the PIL was updated in May 2012 and says that domperidone should not be taken with erythromycin because of heart risks. I don't know what to do! The earliest I can get a GP appointment is Friday but she is genuinely as useful as a chocolate teapot with regard to the gastroparesis.
 
Have you tried NHS direct or are they not much good for what you need to know? I hope you get it resolved.
 
Thanks Caroline, I did think about NHS Direct but I don't think that they would be able to help
 
I wonder if a pharmacist could help in explaining the risks and if there are any alternatives?
 
Thanks Northerner - we must have been thinking the same thing. I just phoned the pharmacist - she explained that the erythromic increases the amount of domperidone circulating in my blood and as I'm on the maximum doses that is not good - she couldn't suggest any alternative and said to speak to my GP who had no suggestions when I first had the gastroparesis confirmed apart from checking that I had a gastroparesis consultant!
 
Is there a NICE guideline for gastroparesis AJ? Might have some snippets of 'best practice'?
 
AJLang said:
Thanks Northerner - we must have been thinking the same thing. I just phoned the pharmacist - she explained that the erythromic increases the amount of domperidone circulating in my blood and as I'm on the maximum doses that is not good - she couldn't suggest any alternative and said to speak to my GP who had no suggestions when I first had the gastroparesis confirmed apart from checking that I had a gastroparesis consultant!
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Sorry to hear this :( Do you know how the respective meds work- are they doing different things (I presume so). Is one more important than the other, or do you think it is only the combination that works for you?
 
Thanks Mike that's appreciated and I have seen it. Alan ive tried domperidone on its own and couldn't eat without feeling awful which is why they added the erythromycin three years ago - but although that helps with some of the problems erythromycin is no good for the nausea/vomiting. There is one other medication - metoclopramide - which they put me on initially but that made me very ill. I started halving the domperidone dose yesterday because of other side effects but don't know if that will help control the gastroparesis problems and the PIL says not to have it with erythromycin at all and if you are on more than 30mg of domperidone there is a heart risk ie sudden cardiac (even without the erythromycin). I would normally be more calm but looking at the PIL realised that a lot of things that had happened to my body over the past three years that I had just accepted are actually side effects of domperidone!
 
I had to laugh when I just saw my darling OH's reply to my concern about these drugs - not good but several of your other drugs have heart risks don't they? Maybe I should just go with the flow
 
Have you tried contacting your diabetes consultant? He/she could reach out to a colleague on their own level (not a GP), even if not a gastroparesis specialist. Don't waste time with NHS Direct, they are next to useless.
 
AJLang said:
I had to laugh when I just saw my darling OH's reply to my concern about these drugs - not good but several of your other drugs have heart risks don't they? Maybe I should just go with the flow
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That sounds like something my OH would say!

Seriously, it must be very worrying for you. I would most certainly try to make an appointment with your diabetes consultant, as suggested, as they should be able to get in touch with the right people at least. I hope you can get someone to speak to soon.
 
Thanks Newbs. I've left a message for the diabetic consultant to phone me tomorrow. I'm feeling calm now - I did contemplate not having my lunch domperidone but felt too nauseous
 
Thanks Redkite. I think the diabetes consultant is my only option but when I saw her a few months ago she didn't know who to refer me to for the gastroparesis. She will have to find someone now
 
Aww Amanda, I came on here to read in depth what was going on with your meds and I'm so sorry for you. I really do agree that someone needs to sort out whether there is another option for you and I so hope that there is. The only other thing I'd say and I hope this is positive rather than negative is that sometimes we have to use/not use whatever gives us the best quality of life right now. I went through this more than once with meds but the most recent was the post stroke statin saga. All the docs thought I should take them, however one said to me that actually I needed to be able to enjoy life right now and if these meds were making me terribly ill, what was the point? He admitted it was a hard decision I had before me. In actual fact it wasn't hard once I'd stopped panicking and maybe you will feel the same if it turns out that you need these meds to get a decent quality of life, for me it was about stopping a drug, for you it might be taking these drugs - sometimes there isn't a 100% right decision but I do hope that there is an alternative for you. Lots of love and understanding.x
 
Thanks very much for this Flutterby. I know exactly what you mean. These decisions are so difficult. My quality of life without these tablets, or on the alternative would be truly horrible as I know from experience. They certainly don't make the gastroparesis symptoms disappear but they make them bearable. Having done a lot of thinking this afternoon i think that I will continue with the combination of medications but try to reduce the dose if I can at least until I've got a relevant consultant to discuss it with xx
 
What an awful dilemma Amanda, I don't envy you. An increased risk in not a certainty, but you really need to know how serious that increase is, so that you can make an informed choice. I hope you can find that answers you need very soon.
 
Thank you LeeLee, really pleased to hear that you're going to the Birmingham Forum meet🙂
 
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