Still trying to get Lodotra after weeks of wrangling
Posted , 5 users are following.
Well Eileen I'm having my tooth removed on Thursday so that will be sorted but I'm not sure you remember my GP was going to sort out me having Lodotra because of the severe reflux and damage done. He's changed his mind and is saying again that Lotodtra doesn't have any proven benefits over and above standard pred.
Also that doctors here stopped prescribing slow-release pred some years ago because of the above reason.
i give up, is there anywhere I can get some written proof so I can back my request .
im now also on antibiotics for this abbcess which causing more problems today was not a good day hopefully tomorrow will be better and I might stop crying!,
0 likes, 20 replies
jennissw elaine_19679
Posted
The GP admitted they had been told not to prescribe the coated kind due to expense however, the U coated. Kind are now almost the same price. I have a copy of the paper /instructions sent to all GP's about it.
I suffered red from sever reflux and bad stomach pains before the coated ones so do ask for those, or insist on them. I doubt they will fund the slow release.
I get very little acid now and here is what I did. Before each meal, I have a sweet powdery PEELED Apple. Red delicious works best, but pink lady and gala work well too. Have this about 10 to 15 mins before a meal. In the morning I add a firm banana (did you know bananas held form a nice thick coat over the stomach lining, helping with irritation?).. This alkalises the stomach. Celery is also good . Then when taking your meds have also a small amount of yoghurt. Have your breakfast with the meds.
look up alkaline foods and change your diet so that at least 2 thirds of your food is alkaline and watch your reflux get better. If I do not have my apple I get the acid again although I have to say, since I added the banana things have been lots better. I have two bananas a day
jennissw elaine_19679
Posted
EileenH elaine_19679
Posted
He's talking drivel (don't tell him I said so, he might get upset) - there is no "slow release" pred - he's talking about enteric coated and it is still available for patients who need it because of gastric problems - and there are plenty. The justification originally was it didn't work as an intiinflammatory any better than ordinary - as Jennis says the work was in Crohns patients so not quite the same basis as for us who have normal guts - and was 17 times more expensive. However, it isn't any more because the manufacturers put the price of ordinary up as soon as the NHS tried to stop the enteric coated. Also, although the GPs had agreed it was OK intitially, once patients could no longer have the enteric coated version they came back in droves complaining of upset stomachs and some GPs admitted had they known what would happen they wouldn't have accepted the directive so easily. Omeprazole has its own side effects, severe for some people, in any case. So it was said that patients who need it - need it and can have it.
These figures were supplied by a pharmacist:
1 month 5mg pred costs £1.31
1 month omeprazole costs £1.86 - required with ordinary pred
Two prescriptions also require 2 dispensing fees paid by NHS.
1 month 5mg enteric coated pred costs £1.86 - no omeprazole required, so only 1 dispensing fee charged to NHS.
Lodotra is about £25 for 30 tablets - and if you need a dose that requires 3 tablets to make it up, such as 8mg, 1+2+5, then it is £75/month compared to about £8 so I doubt they will approve that unless a rheumy/gastro says it is needed, which they can.
But the clinch is the gastric problem - enteric coated might be enough for you but Lodotra would be even better since it releases more reliably after 4 hours, enteric coated can take up to 6 or 7 hours. Both are released further down the gut than the ordinary pred which is absorbed from the stomach and that is where the problem lies for you.
How would HE know whether it has any proven benefits anyway? He won't have read the documentation from abroad (it is probably in German but I'll have a look later) - plenty of rheumatologists there use it because it has advantages. He is refusing on cost grounds but doesn't want to admit it - Lodotra IS expensive and it comes out of his budget so he's probably been told to refuse it.
Can you get your gastroenterologist onside to at least get enteric coated pred? Which will help the gastric problem at least.
elaine_19679 EileenH
Posted
ny rheumys words were" I would have no particular objection to your GP prescribing the slow release formulation if you would like to do so" but my GP doesn't seem to want to.
i take rabeprazole because it's the only one I can tolerate and my gastro consultant is monitoring me because in spite of the medication the fundoplication and hernia repair previously done is now in need repair again. I'm struggling to get the inflammation down and have erosions too.
i have been taking coated pred for a few months now but am concerned about dropping down from 10 mg which I've been on for two months now.
how do I avoid the uncoated 1mgs?
why did the GP need to get in touch with the central pharmacist? I just wondered.
ive told them I'll pay for it but they don't seem to be listening.
if I wasn't feeling so down I may be able to cope a little better.
anyway I'm not giving up and will be back there next week to ask a few more questions
many thanks
EileenH elaine_19679
Posted
The reduction scheme is in posts 4 and 5 of this thread:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Probably needed the central pharmacist to give him the details of Lodotra - always supposing HE'D heard of it.
elaine_19679 EileenH
Posted
never thought of including my gastro and he was concerned that I could be taking pred for quite a while yet . He said even when I stop taking it I would still have to wait a while before he could do the op.
i really don't want to have it done again, takes a fair while to get back to normal eating Plus yet more surgery really doesn't appeal!.
EileenH elaine_19679
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elaine_19679 EileenH
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He was adamant the problems had been caused by pred and my weight gain even though I'm not massively oversight looking at my notes I'd put on over a stone. So maybe I could call his secretary and see what she thinks, she is very good.
ptolemy EileenH
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vanessa66630 elaine_19679
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EileenH vanessa66630
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elaine_19679 vanessa66630
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i to am suffering from depression and at present am taking antibiotics for an abbcess under my tooth w hich is so painful.
this condition throws up so many problems along the way and it seems like you sort one out and another problem appears.
I feel this could make a difference to me if I could just try it and like youi will fight until I am listened to .
thanks for your good wishes and I'll keep going
vanessa66630 elaine_19679
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EileenH vanessa66630
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I suspect it depends WHAT you eat - if you are eating carbs, which are easy to eat, then the weight problem may remain.
vanessa66630 EileenH
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EileenH vanessa66630
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I think it is probably a reflection of how we are all affected differently.