Still trying to get Lodotra after weeks of wrangling

hi there. I got the same response when I asked for coated pred. They told me there was no evidence it helped, even though I get pain without the coated ones and not with...which is evidence in itself. I did find some clinical trials but they were for people with crohns and therefore infective because they went straight through those people. However many people on sites such as these report the coated type help. 

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

Excuse my iPad and the typing errors. Just to add, I have some links to alkaline eating but not sure if I am allowed to post them here. So Google alkaline foods and also reflux and alkaline foods

Sorry this has taken so long - the site was unreachable this morning and then OH decided to redo his jungle of wires! No wifi!

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.

Hi, please dont give up, I asked my rheumy for Lodotra when I was diagnosed, he said he did not think I needed them, I was so worried as had many problems  with uceration and inflamassion of my gullett, because of this I telephoned the southend hospital where I knew Because I had read about him on patient uk was the best man for treating PMG, and asked his secutary if he would perscribe it, she said she would find out and telephoned me back to say he had    perscribed it and would be happy to see me, I went back to my rheumy and told him, he perscribed it for me but had to pay for it, but since then I have got it on perscription, we only have one life and should be able to have some say, when I really think something is right, then I will fight heaven and earth to achieve it. My doctorssaid I was suffering with depression for a long time and as fate would have it I went to a oral specialist about a ulcer on my tongue, who told me I had Polymyalgia, this only happened because he had time to actually talk to me and ask why I was taking antidepressants, up until then I had never heard of it, and only through patient Uk i have learnt all I know.GOOD LUCK