Still trying to get Lodotra after weeks of wrangling

Bones, joints and muscles
1

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!,

2

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

3

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

4

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.

5

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

6

For anyone looking in -  the doctor in Southend is a top expert in PMR and GCA, but you don't have to get to Southend for some other equally good ones. There are top people in Gateshead, Chapel Allerton, Leeds and St Peters Ashford who I wouldn't hesitate to recommend. There are others - but these are my "personal experience" recommendations.

7

This makes things a lot clearer Eileen, hope the wires are nice and tidy now.

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 

8

Get your gastro onside - Lodotra would be far cheaper than the repair. The reduction plan I used, used slowly enough. would allow you to reduce 2.5mg at a time so no plain tablets needed. That is the advantage of the Lodotra as it comes in 1's and 2's to make reduction possible.

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.

9

Hi, your post is very encouraging and I'm just hoping I can change their minds. I have the same problems as yourself and my gastro consultant wanted to repair my hernia and stomach valve for the second time but can't as he said it would be impossible while on pred.

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 

10

Ok ,I'll look at the thread just in case he's still not on side when I see him .

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!.

 

11

He is the person with the biggest concerns about the pred - so it would make sense to bring him into the loop. I assume he's concerned about healing.

12

I Do hope you manage. To try my apple and alkaline way of eating above. It costs nothing and my stomach has improved.

i can't tolerate more than 1mg of the U coate pred so my reduction1/2 mg a month has gone like this 12.5 one day 10 the next. My rheumy. Also worked out  a 3 day plan for lower doses. This has prevented me having any u coated and the3day plan should help me not have any more than 1mg

i may ask my rheumy about lo darts as well

13

Yes he was, he was asking how long it would take me to get of pred and said all he could do was give me advice on losing some weight which would help and carry on with the medication. 

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.

14

It is said too that cutting carbs drastically can improve reflux a lot. There was a study somewhere but I can't remember the reference. Some people were able to drop their PPI medication.

15

Hi, I'll try your suggestions that I don't already do and thanks so much for that but I have a problem with some fruits and apple is one of them. Anything that helps is welcome and I will persevere. I'll let you know how I get on. 

16

Yes Eileen  this is what I'm trying right now, my gastro man (Mr Super) his name is, recommended a low carb high protein diet which he says should reduce my weight and improve my condition. 

I saw him three weeks ago so too soon to tell plus Christmas coming. Saying that it's not a change I'll have too many problems with, I hope.

17

just want to ask you has PMR made any differance to your eating? for me it is worrying because I have always loved my food but since PMR started have gone off eating, no longer want any type of meat, and make myself eat, however I have not lost any weight, which is sad as I am overweight, dont seem to have spoken to anyone else with this problem., so please if anyone else has suffered this way please let me know. 

18

I had a private prescription for pred when first diagnosed with PMR and was paying 10 pence per 5mg tablet for the enteric coated pred. For Lodotra Lloyds Pharmacy charge 111 pence for a 5mg, 2mg or 1mg tablet with a private prescription. The NHS will be paying a lot less of course.

19

I stopped craving carbs with pred but my daughter loses her appetite altogether with pred. 

I suspect it depends WHAT you eat - if you are eating carbs, which are easy to eat, then the weight problem may remain.

20

Hi, I lost my appetite a long time before I started preds, and did not understand why, I have not heard from anyone else who has had this with PMR, then i thought preds would make me want to eat but they dont, hoped I would find someone on this site who had the same problem, the good and bad thing is i have not lost weight, love to hear from anyone else this has happened to.