Ordering Pred.

[Pebble-Sue55]

Is it normal to have to phone the surgery every month to order my Pred. When I first started a year ago, they were automatically included on my repeat prescription with my other medications each month. Now suddenly I am told I have to have a telephone appointment each time they are due then make an extra trip to the chemist 10 miles away to pick them up. I have reduced from 10mg to 7.5 in the last 6 months. Occasionally I have had to up the dose a fraction due to return of pain. I feel like I am being monitored by 'the tablet police'. I could do without this extra pressure, some days I am so shaky and anxious, but I manage to wobble myself through the day. This extra pressure just adds to my anxiety. I get so worked up each month when my prescription is due. I have been on antidepressants for many years due to past trauma and have managed to keep myself on an even keel, with the help of a sense of humour about life in general, I also have the dreaded 'Brain Fog!!' Which doesn't help when trying to remember to phone the surgery on time. I try to write it down, but then I forget to look.😨

[PMRpro Ambassador]

I suspect it may be a new directive from their practice manager in the context of cost-cutting - plus we are supposed to be monitored carefully on certain drugs, pred is probably one of them and there is also little provision for the fact we are long term patients on pred, most people are on for a short time and stop and this could be to make sure people aren't continuing to get prescriptions for tablets they don't need.

I would discuss it with the doctor - bypass the receptionists if it is they who have told you - and if they aren't helpful discuss it with the practice manager. You are not going to be stopping your pred any time soon and this is almost doubling the basic cost of the pred because every time it is dispensed there is a dispensing fee to be paid - which is the same whether you get one month on that prescription or 6 months. Added to which, there will be a fuss if you need a top-up because you are off on holiday and need it early. Point out the inconvenience of traipsing 10 miles to get the darn stuff as well and how it is stressing you.

I do understand how you feel - I can have 2 months-worth of pred but there is no real restriction when I go and ask for more because we're to be away. The other long term stuff I can have 3 months-worth. I'm also lucky because if I do run out the pharmacy is in the village and will sell me anything to tide me over because they know me - I get the cost back when I produce the pack and the new prescription, however much later it is. But that's Italy...

[Mish1920 in reply to PMRpro]

I lived in Ireland for 10 years and was able to buy any 'top shelf stuff' over the counter. I really appreciated the easy-going set-up between pharmacist and GP and their patients.

[markbenjamin57]

Pebble-Sue55, If it helps:

My local GP surgery (in Somerset) has a very user-friendly facility where you can order repeat prescriptions online via their website. The scheme is administered via mysurgerywebsite.co.uk who apparently have more than 4500 surgeries on their books.

If your surgery is signed up to the above, they will have details of your medication listed so that you can order online well in advance, and avoid the cost and hassle of phoning your GP each time. Also, it allows you to set-up reminders via your e.mail account and you can receive confirmations of each request. This way, your GP should be able to just 'approve' the repeat requests when received electronically, and you collect as usual. There might even be a way that you can order online and ask the surgery to post the prescription slips to you.. maybe worth asking them?

First off, it might be an idea to ask your local surgery if they are signed up to mysurgerywebsite.co.uk. Or, you could check it out for yourself on your GP surgery's website (if they have one!).

Hope this helps

MB

[piglette in reply to markbenjamin57]

My surgery uses patient.co.uk which works the same for repeat prescriptions, it also has a good discussion board on PMR. I think a lot of surgeries use patient.co.uk to look up information as well. I did have pred on repeat for a year, but I noticed last time the renewal date has been reduced to six months. I have 100 tablets repeat for 1mg, 2mg and 5mg which lasts quite a while and I can mix and match.

[olive2709]

I have to do mine every month. With the reduction plan I have been given by rumatolagist my requirements change every month so no way round it luckily I only live 7minutes walk from surgery . I keep a letter on computer so just open change date and dose and put in with other repeats last week of the month hubby on tramadol so can only have that monthly. Like pro said speak to doc

[DorsetLady PMRGCAuk volunteer]

Hi,

Like Mark I order mine on line monthly - on repeat prescription. In fact on my 1mg it says "amount to be taken as required" - so each month was 4boxes of 28 tabs.- put on there when I was on 4mg per day, left like that until I got to 2mg when changed to 2 boxes of 28tabs. Your surgery seems to be making it unnecessarily difficult.

For info my online is EMIS app - just ask your surgery if they do it, and they will give you a password to set up your account. My surgery, because it's in a village, has its own dispensary - makes life very easy!

[Annodomini]

I have 5mg and 1mg tablets on my on-line repeat prescription. I request what I need each month on line and the practice emails the prescription to the pharmacy where I then go to collect it. There were a few hiccups when the system started, but now it appears to be working well. By the sound of it, Pebble-Sue55, some jobsworth in the practice has made a decision without consulting your doctor. No point in asking the receptionists - take it up with the GP.

[Runrig01]

I am lucky in that my GP set mine as a repeat prescription, allowing me 200 1mgs at a time, and 100 5mgs. I just request online wh n needed. I am free to adjust dose as needed within reason. I also hav 2.6mgs on repeat when I need them. My GP seems to prefer reducing the amount of contact I need with him, thereby reducing there already overburdened schedule

[Pebble-Sue55]

Thank you all. So much for you helpful comments, I am beginning to think think there is a 'jobsworth' at work. I already use Patient Access to have my regular monthly prescription delivered to the chemist. Up until recently this did include my Pred. Then a couple of months ago they stopped sending the Pred without telling me and when I rang the surgery and spoke to the GP I was informed that this is how they do things now. No further explanation. It would help if between us we could get the timing of the two prescriptions to go out at the same time, but even this seems too complicated for the surgery to grasp. You can't take your eye off the ball for a second, can you? Happy Days😜

[JJackdaw]

I have to ring surgery every month too but they then send script to chemist who deliver it for me.

[SheffieldJane]

I have had similar experiences with my GP surgery. You need to make an eloquent speech to the doctor about how this makes you feel. This apparent monitoring is what passes for care in institutions. Mine relented when I convinced them that I understood the risks and wanted to take responsibility for my own condition. Good doctors are receptive to this. My surgery delivers my repeat prescriptions to its adjoining chemist who in turn deliver them to my door. I am reviewed every 6 months and I make an appointment if I think a change of dose is indicated or that there is anything I am concerned about. Invariably I get my own way with warnings ringing in my ear. Scary but better I think even when I'm feeling confused and weary ( often).

I think there is a link between periods of extreme stress and this condition. It was certainly my pattern. Cherish and spoil yourself, you'll mend.

[Pebble-Sue55 in reply to SheffieldJane]

Thank you Jane, I know what you mean about the GP I just tell them what they want to hear, they get a bit out of their depth if you don't stick to the script, last month I thought I would ask him about the awful weakness in my arms, his reply "oo-er" embarrassed giggle, "when are you seeing the Rheumotologist?" We just have to play the game and let them think they know what they are talking about, otherwise they sulk. Thank God for sensible sites like this, it is a lifesaver. Lol

[PMRpro Ambassador in reply to Pebble-Sue55]

Print and take a copy of this (at least)

rcpe.ac.uk/sites/default/fi...

and suggest they might like to invest in the latest pocketbook from Oxford Rheumatology Library:

Polymyalgia Rheumatica and giant Cell Arteritis

Edited by Bhaskar Dasgupta and Christian Dejaco

ISBN 978-0-19-872920-4

and use it for some holiday reading.

There are a few omissions but on the whole it covers a great deal of what they should know.

And refer them to a paper by Helen Twohig, "I suddenly felt I'd aged"

pec-journal.com/article/S07...

which describes, in patient's own words, what PMR does to us and discusses it. It's behind a paywall unfortunately for us, they should have an account at a library to get such stuff, but is superb.

There really is no excuse for "Oo-er" and an embarrassed giggle.

[Pebble-Sue55 in reply to PMRpro]

Thank you for that PMRPro. I read the first article, it was very enlightening, I am glad to get hold of any info about this horrible disease so that I can know what I am dealing with as there are so many nasty surprises involved. I will have a try at presenting these to my GP and see how it goes. I am sorry if I always seem to be 'doctor bashing' but I have had lots of negative appointments since the diagnosis of pmr, it never happened with other conditions over the years. keep up the Good Work😊

[HeronNS in reply to Pebble-Sue55]

Pebble-Sue, I've just managed to read the article by Helen Twohig, accessed through a local university. It's well worth getting hold of if you can, although not paying the ridiculous fee to climb over the paywall!

[Skihexen]

I had a similar problem about a year after diagnosis I could no longer repeat order my 5mg pred tablets. When I checked with my GP the 5mg had been stopped as my original treatment plan suggested decreases that would mean I no longer required them.as my dose would be lower than 5mg. Unfortunately that was not the case and have only just dropped below 5mg. Worth chatting with the GP sometimes they are unaware this has happened. I remember that sense of panic at not being able to get the 5mg and some days counting out multiple 1mg tablets and chasing them around the table and inevitably the floor. lol makes me laugh now but not funny back then.