GGMS!!!!

[Soraya_PMR]

I ordered some more pred, with a note stating now on 9mg a day.

That’s 1x5mg and 4x1mg. Not difficult is it?

So I picked up my package from the pharmacy: 120x5mg (4 months worth) and 30x1mg (7.5days worth)

I rang the surgery. Took a while to get the receptionist to understand. Was put on hold 3 times.

No! Your records say 11mg, Dr has prescribed 11mg, therefore you should be taking 11mg.

Erm no! I try to explain, give up, and ask for a script for more 1mg. I’m not going to take more than I need, so that should be fairly simple????

No! We’re still harping on about taking 11mg as prescribed.

Get the big guns out: ‘I don’t think my consultant will be very happy when I see her and tell her I’ve increased my pred on your say-so, do you?

Can’t speak to GP as yet again he’s on holiday. She’ll leave a note for another doctor, but won’t know the answer til Thursday/Friday. She has 7.5 days to sort it!!!

What’s that about stress being detrimental to PMR?

[HeronNS]

Someone's math leaves a lot to be desired. You should have been given four times more ones than fives, not one quarter the number. I think the 11 mg claim is obfuscation.

[Soraya_PMR in reply to HeronNS]

Well I thought it was a fairly easy calculation. Obfuscation is a good word.

[Hidden]

What a set of mean inumerate numpties. Even with a wholly woolly brain I could work that out. And it drive me mad when repeats are on date cycle put the pills usually 28 days worth.

Talking of such things I realised 30mins ago the I had no recollection of taking pred this morning. I also want some fucidin h cream as it has really helped all the little burn nick and boils I seem to get. Last tube lasted 6 month and all my wounds heal now.my sleeping pill kicking in so haha ing now.

[Soraya_PMR in reply to Hidden]

Hope you did take your pred

I think GP will be kicking himself for having issued 4 months worth of 5mg pills, he usually only gives 4 weeks.

He issued my HRT patches for 4 weeks at a time until I complained. Most of my girl friends would get 6 months at a time. And each script was another charge to me. Wouldn’t mind so much if he ever checked my BP, but never did. After my complaint he issues 6 weeks at a time <rolls eyes> I’ve got a prepayment certificate now so no worries, but I do find it mean!

[SheffieldJane in reply to Soraya_PMR]

I get 28 days supply of everything I take but from the day it was prescribed. Each month I have to phone the pharmacy attached to the surgery at least twice. Everything is ready at different times, Thyroxine, dry eye drops, Pred etc. It’s a nightmare that I can’t seem to sort out.

[Soraya_PMR in reply to SheffieldJane]

Surely the pharmacy can streamline it all (especially as it’s attached to the surgery). I’d have thought that was part of their job.

[SheffieldJane in reply to Soraya_PMR]

Short of examining the system in the surgery and the system in the pharmacy and encouraging them to actually talk to each other there doesn’t seem to be much I can do. I used to get 3 month prescriptions and all was fine. I wonder if this is a funding issue - eg paid for each prescription. It is a case study in cheerful inefficiency.

[Soraya_PMR in reply to SheffieldJane]

I witnessed a lot of non communication when I was caring for MIL. Being a carer is very isolating, and it’s a fight all the way, yet no one truly listens when you present a problem.

[PMRpro Ambassador in reply to SheffieldJane]

The NHS has to pay a dispensing charge for each one to the pharmacist.

[SheffieldJane in reply to PMRpro]

I was visited by a woman ( this Monday) who used to work at my surgery, pharmacy and asked if I would like to join her new pharmacy. It seems that she has cut out the actual public facing outlet and will deliver your prescription to your home. They must get the drugs wholesale or something. She’s a nice young woman who used to sort out my problems with the doctor’s surgery attached pharmacy that I use. You would have no right of redress though. At least I can get it sorted in person at present. I have got a horrible feeling that this may turn into a racket. Good for Jeremy Hunt.

[BonnyQuine in reply to Soraya_PMR]

Streamline? NHS? Surely you jest!

[Soraya_PMR in reply to BonnyQuine]

I live in hope!!

What’s the quote? Something along the lines of... "It is better to strive for perfection and fail, merely achieving greatness, than to strive for mediocrity and achieve it” No idea who said it!

[polymy in reply to SheffieldJane]

Hi SJ,

I had all mine synchronised at the end of last year. A pharmacist attached to the practice called me in and sorted it. It was like a nightmare before then. I am prescribed 6 weeks worth at a time. I should ask for it to be done at the surgery. I don’t think it comes within the pharmacy remit.

Liz.

[SheffieldJane in reply to polymy]

I will try. Trouble is, it seems to be a different pharmacist every other week. I think it is a systemic fault, using the word system loosely.

[polymy in reply to SheffieldJane]

The pharmacist who called me in was one employed by my surgery. I think the idea was to reduce the amount of medication people were having! We old age pensioners who are draining the NHS dry. 🙄. The ordinary pharmacy can’t really meddle with your meds. I suppose you could leave a letter for your GP explaining your difficulties. I really do sympathise. I was forever in the chemist. They became personal friends in there. 😊. Good luck.

Liz.

[morrison in reply to SheffieldJane]

Why don't you ask to see the practice manager and get him to change your prescription so that you can receive everything together. Thank goodress you don't have to pay for your prescription if they all come at different times. Would cost a fortune.

[Lilact in reply to SheffieldJane]

Mine is so easy go online order what I need and it's ready to pick up at the chemist in 48hrs

[PMRpro Ambassador in reply to Soraya_PMR]

They were/are also a charge to the NHS - a fact of which I suspect some GPs are oblivious! At least £1 per item per script and often more...

[Soraya_PMR in reply to PMRpro]

Maybe I’ll remind him.....only 12 days now til my appt.

[SheffieldJane in reply to Hidden]

Don’t you have a daily pill boxy thing?

Good night sleep tight. 🌙

[Hidden]

Sounds like the surgery I attend, that is when I can get an appointment 😵😱

[Soraya_PMR in reply to Hidden]

19 day wait for my next appointment!

[Hidden in reply to Soraya_PMR]

Ha, it must be my surgery ?

[Hidden in reply to Hidden]

Sounds like my surgery too!

[violetsnowdrop in reply to Hidden]

I book an appointment 6 weeks in advance online and hope I'm unwell enough to justify it! It worked yesterday-- booked to discuss my refusal to take dapagliflozin--ended up being referred to hospital for a CT scan, where any skeletal injury was dismissed but a slight tear of the Gluteus Maximus was diagnosed. Ironic , isn't it? I now have a pain in the @^&! and it (like the surgery) will takes weeks to be of much use!!!

[Hidden in reply to violetsnowdrop]

I do that too. There's usually something I need to.discuss by the time it the appt comes.

[BonnyQuine in reply to Hidden]

Can't do it at my surgery - no advance appointments, except w a nurse-practitioner. You have to queue at some ungodly hour in the morning for same day - and might not get one even then. Obviously designed to put patients off. Sigh . . .

[Hidden in reply to BonnyQuine]

Yes my surgery opens at 8.30 and you have to gdt there at 7.30am. The online system has been a lifesaver.

[BonnyQuine in reply to Hidden]

They've stopped online booking at mine. Guess too popular? If I had the energy I might start a petition . . .

[HeronNS in reply to BonnyQuine]

Here they've just joined the 20th (sic) century by allowing doctors to charge medicare for phone calls with patients.

[piglette in reply to BonnyQuine]

We have on line booking but the latest appointment is 9.30am and they seem to be very limited in number.

[Hidden in reply to violetsnowdrop]

Sorry to hear about the pain in you @^& Violetsnowdrop! Although I am grinning, I KNOW it is not funny! Buttocks pain is horrible...

My surgery opens up "next day appointments" on-line after mid-night.

When I wake up to go to the bathroom at whatever ungodly hour that is, I sign on and make an appointment for the next morning... I don't think many know about, so if you look on-line before midnight, there appear to be NO appointments.

[Hidden in reply to violetsnowdrop]

There are never any appointments on line, it just says 'contact the surgery'. Apparently they are migrating to another system. So I went to the surgery to sign the documents to get on the new system and at the same asked for an appointment. They said they had only got emurgecy appointments and my request was not an emergency. Oh well I'll wait till it is 🤕😵😱

[PMRpro Ambassador in reply to Hidden]

A GP receptionist tried that with me one Monday when I asked for "reasonably urgent" appointment for my daughter: Thursday evening. Oh - in that case I'd like an emergency one. Which I got. But the GP disputed the problem and told me to get out of his surgery as I was just a troublemaker. So I took said daughter (who was present) to the psychiatric unit where she had recently been signed off - and the paed psych agreed with my suspected diagnosis of depression (her father was seriously ill with cancer at the time but none of the rest of us counted in this GP practice) and told me to go and sign on with a practice in the next village. Best thing I ever did - and eventually OH joined us. Hamish was brilliant - even before OH joined him he would call in when passing to make sure we were all OK!

[Hidden in reply to PMRpro]

I Very good outcome by the sound of it. Congratulations.

[BonnyQuine in reply to Hidden]

Oh, I know the feeling, Pastit. In the early days of this condition, when totally incapacitated early mornings by excruciating headaches (GCA), I first got an appointment by writing a detailed, v sharp, letter to GP. (Phone queues were even worse than physical ones - no chance. Had been trying for more than a week. ) Told him I thought that vulnerable, elderly people were not being cared for by that practice and were at risk. After that I did get a series of weekly appointments for about 6 weeks, but then reverted to 'normal' system.

That was the beginning of my disillusionment w how the NHS is now. It used to be a good practice but has changed - seems overwhelmed. Since then, whenever I think I really need something, I revert to letter-writing. Seems the only way.

[Hidden in reply to BonnyQuine]

Ha BonnyQuin, yes it seams the only way is to write a letter to the respective Doctor. I haven't seen a doctor for over six months. I am due for a blood test soon. I'll see what happens when I try and book that.

[Soraya_PMR in reply to violetsnowdrop]

Have you been sitting on it too long Violet?

[CT-5012]

Wonderful, someone needs a lot of help with maths! Took me about a year to get my on line repeat prescription sorted. More stress with docs reseptionists than anything else. 😨

[Soraya_PMR in reply to CT-5012]

Not even going to try on line repeats!

Doc won’t even add pred to my repeat slip, so I write it on myself. Think he’s still hoping I won’t be on them long

[Hidden]

Oh my! 😧

[Soraya_PMR in reply to Hidden]

Indeed!

The mind boggles doesn’t it?

Next time I may have to write it out in full... 4x1mgx28days=112!!!!!

Or would that be facetious? No, but probably sarcastic.

[SheffieldJane]

Oh for crying out loud Soraya!

If they insist on giving you 11 mgs then they can give you one 5 mgs and 6, 1 mgs for each day of the 4 months and you can hoard the 1 mg tablets for when it gets even trickier.

[Soraya_PMR in reply to SheffieldJane]

That’d be good, but doubt they’ll fall for it. Isn’t it awful that we feel a need to hoard our treasured pills. Let’s face it, they can’t just stop them due to the nature of pred, but that fears seems to hang over us.

When I think about it I’ve never before seen a thread where the complaint is TOO MUCH pred. Usually it’s quite the reverse. Did we slip into a parallel universe while I wasn’t watching?

[SheffieldJane]

I think they think they are being professional and keeping the patient safe from dangerous drugs, but in fact they are being inefficient and obstructive thereby causing stress to already sick people. Anybody would think we liked the damn things!

[piglette]

I ordered my repeat prescription of pred online last week and on checking discovered it had been rejected. Panic and Stress. I phoned up the surgery the following day and was told it was rejected by the doctor but they did not know why, but he had then put the order in! Oh well.

[Hidden in reply to piglette]

That is so unprofessional.why son they educate themselves. Cheaper in the long run!

[piglette in reply to Hidden]

I have just checked on my blood test I had this week, my CRP is 40 and my ESR 98, the receptionist said that the doctor had said everything is fine!! I am getting a bit worried.

[BonnyQuine in reply to piglette]

I'm no expert but those sound a bit high to me. Could you get a second opinion?

[piglette in reply to BonnyQuine]

It is definitely a bit high in my opinion. I suppose because my CRP went up to 415 last year after a hip op they are becoming blasé. The results dropped to CRP 29 and ESR 58 at my previous blood test a month ago. Now they are going up again. The GP I am seeing is the best in the practice of four doctors.

[Soraya_PMR in reply to piglette]

Definitely a rising trend there piglette

Have you asked what figure is required for it not to be ‘fine’?

Did you have an infection associated with the hip surgery?

[piglette in reply to Soraya_PMR]

No infection with my hip, they reckoned it was a flare. They agree 5 is the top of the OK for CRP. I suppose they are so fed up with it being over that, they think it is normal for me! Got a phonecall with my GP tomorrow, so will have another go.

[piglette in reply to BonnyQuine]

Talked to my GP today, he suggests I have blood tests again in four weeks time. I asked about seeing a rheumatologist and he said leave it for four weeks!

[BonnyQuine in reply to piglette]

Well - if they both agree it's probably ok. They'll be hoping both have gone right down by then. Do you feel worse than usual? The experts on here do always say we should be symptom led.

[piglette in reply to BonnyQuine]

I have never seen the rheumatologist so I haven’t a clue what he thinks. I feel a bit like death warmed up at the moment. GP seemed unmoved.

[BonnyQuine in reply to piglette]

Sorry to hear - this must be worrying for you. I'm not in a position to comment - except that varying degrees of 'death warmed up' has been my default setting for much of the last 16 months. What I do = rest as much as poss, stay alert to new or increased symptoms + avoid stress (!) keep fluid intake up and fingers crossed. Warm wishes that things will gradually improve, and that seeing the rheumatologist in 4 weeks will mark a turn for the better.

[BonnyQuine in reply to piglette]

Have realised GP doesn't want to refer, sooner than 4 weeks. Guess that means he's hoping yr numbers will be much better in 4 weeks. He might be right.

[piglette in reply to BonnyQuine]

He might be right and is hoping so, but I know there is a problem and it would be nice to see someone who knows about PMR. I have had raised inflammation markers since last May, no one seems interested. I will not see the rheumatologist in four weeks. The GP will make decision then whether I should see one at all!

[Soraya_PMR in reply to piglette]

That’s the problem. 4 weeks from now you will have to wait xxx weeks to get an appointment as well.

[piglette in reply to Soraya_PMR]

I know, depressing isn’t It?

[Soraya_PMR in reply to piglette]

It is.

How time drags when you’re in pain

[Vanner460]

I must be extremely lucky. My repeat form lists a months supply of everything I take, and I just order what I need. I am down to 3mg of pred (after 4 years) so I only order 1 mg tablets. My meds are delivered by the pharmacy, so no matter if the delivery is split, pain relief often arriving a day after the bulk order.

[Rugger in reply to Vanner460]

I am lucky too, Vanner460. I order all my meds online and the list contains every sort of pred - plain, gastro-coated and in all denominations! I order what I want and have a (small) surplus "for a rainy day" lol! Whenever I see my GP or speak on the phone about blood results etc, he always asks "What about tablets, do you need anything?"

Appointments with him are hard to come by unless I book online in advance, as others have said they do. However, I have his email address, so can always send him a message, but I don't abuse it. All this on the NHS!

As I've so often read on here - we're paying their salaries!

[Soraya_PMR in reply to Rugger]

Sounds like heaven Rugger.

No emails here, it’s like they’re protecting a lord within his castle!

[B4lamb]

I understand that they cannot modify the prescription without a doctor's permission so I'd just go along with it. It's no big deal unless you must have slow release. I don't mess with the 1 mg tabs any more. If I want 4 mg I just nibble a bit of a 5mg away with my finger nails. It's easy enough to judge. You could use accurate scales if you want to be precise. I'm guessing a 1mg tab costs about the same as 5mg when packaging is added so it's probably a lot cheaper to just have the 5mg's. You should count yourself lucky you were given 4 months supply but that will be 2 months really when you use half of the to make the 4mg dose.

[Soraya_PMR in reply to B4lamb]

I take gastro resistant pred. Can’t cut them.

Last script I had was for 10mg, so it has been ‘modified’.....upwards to 11mg!

[B4lamb in reply to Soraya_PMR]

You should have said in your first post on this. It would have made all the more pertinent.

[B4lamb in reply to Soraya_PMR]

You are lucky you got any ones then as you would expect only 5's for a 10 mg dose.

So if your last script was for 10mg how did you reduce from 10 to 9 if you can't cut them?

[PMRpro Ambassador in reply to B4lamb]

By using 5mg plus 1mg tablets...

[B4lamb in reply to PMRpro]

Well yes but that is an assumption. If the script was for 10mg/day the logical units would be 5mg. Why would they give say 30 x 5mg plus 150 X 1mg for a 1 month supply, because that is what they would have to do. It wouldn't make sense to meb that they would do that.

[Soraya_PMR in reply to B4lamb]

PMRpro ’s assumption is quite correct. I had a few 1mg tablets left from a higher dose, can’t remember which or when, maybe from when I flared and had to go higher.

I feel you have missed the point B4lamb . Whichever way you look at it, the amount of each size tablet was incorrect. Plus I had a RECEPTIONIST telling me to take 11mg, apparently negating my 2mg hard won reduction. Even IF my dose was supposed to be 11mg, then I had far too many 5mg tablets (2 months) and only one month of 1mg.

I now have a further 100 x1mg tablets, so next month I only need to order 1mg tablets, be that to make up to 9mg or 8mg.

Not quite sure why this thread seems to have bugged you B4lamb. I am sorry if I have upset you.

[PMRpro Ambassador in reply to B4lamb]

It might not make sense to you - but it is quite obvious that they weren't thinking.

It DID all make sense to me. And I don't even have to fight the NHS any more...

[Hidden]

Same old same old!! I have a large collection of Tee shirts on this one too. Sticking to the script. Total no brainer. Sometimes they are like an Alien species from another planet! I could weep with rage!

[Jeanjean16]

It happens to me every month, they never get it right. When I wanted 9m.gs I was prescribed two lots of 5. Seems doctors are good at medicine but not maths!

[Soraya_PMR in reply to Jeanjean16]

I can’t and won’t put up with this every month! Even if I have to put in an A4 sheet with full explanation and calculation.

[Rugger in reply to Soraya_PMR]

Soraya - to the Practice Manager! (See my reply to Vanner460)

[Soraya_PMR in reply to Rugger]

You’re probably right Rugger. I’ve known her for years, she was with my old GP until he retired. New GP then incorporated a defunct practice into the existing, moved to bigger premises, and it’s lost the personal touch and become ungainly.

[Rugger in reply to Soraya_PMR]

You are at an advantage, knowing her. She needs to know what the receptionists and the doctors are saying. It might help others, if you raise the issue. If you don't, they'll just carry on as they are.

Good luck!

[Soraya_PMR in reply to Rugger]

Good point, well made. I need to dig out the ‘old me’ and go into battle 🤺

[Rugger in reply to Soraya_PMR]

Hope you won't need to 'battle'. She probably has no idea what's going on. Be calm and assertive - I know you will! As you say - take the A4 sheet with all the calculations - better still, a piece of Flipchart paper!

I'm tapering at 0.5mg a month, so need 2.5s as well - that would throw them!

Ask her if they think you're going to sell them on the black market - your pharmacist will give you the prices - pence!

[Soraya_PMR in reply to Rugger]

Black market! That made me chuckle.

[HeronNS in reply to Rugger]

I don't think we can get 2.5 tablets. I used to cut a 5 mg if I needed something like 2.5, or, hopefully now long in the past, a dose like 7.5. You can also take half a 5 with one or two ones to make up 3.5 or 4.5.

[Rugger in reply to HeronNS]

Yes, Heron - in the UK we can get 2.5mg gastro-coated, which is what I take, so they can't be cut - rather, the 5mg coated ones can't be cut to make 2.5. We can also get 1mg coated. I don't know if we can get 2.5mg plain, uncoated, but I have a pill cutter that I use when I take the plain pred. I mix and match, splitting my dose and taking coated pred at night, so it takes a bit longer to be released and uncoated in the morning. What a carry on!

I don't know how I'd feel if I thought my doctor's surgery was making if even more difficult to look after myself.

[HeronNS in reply to Rugger]

I find it interesting to see the difference between our respective universal health plans. We don't have public coverage for things like dentistry, physio (I think you can get physio if you wait six months or a year for an appointment at a hospital but I don't need to do that), etc. Your medicines are covered, while ours are covered by our personal plan. And you get a few tablets at a time and have to keep ordering more, whereas at present I have a prescription for 300x1 mg tablets, with several renewals (prescription will expire before I've used them all up). So that's one less stress for me. In the past she wasn't quite so generous, although I was never short, but I think my flare last year set her back on her heels a bit!

[stellafmdm]

I think I must be exceptionally lucky with my GP, she always gives me plenty and of the right stuff too!! She is a gem, and listens to what I say and tells me to get on with the reductions as I need to! Even sometimes telling me to stick at some level for a bit longer!!!

[Soraya_PMR in reply to stellafmdm]

How refreshing

[stellafmdm in reply to Soraya_PMR]

Yeah wonderful! so unlike most of the GPs I'm reading about here!

[Rimmy]

Oh dear Soraya I feel for you - who needs the extra stress !

I LOVE my GP !!- he gives me WHAT I want WHEN I want in WHATEVER denominations I WANT - all after I TELL him exactly what I want and then the pharmacist dispenses everything without any complications. So unless I am 'half-dead' i will never go elsewhere ... I am just hoping now that my delightfully 'amenable' doctor doesn't either or I might have to 'follow' him. I guess given the frequent hassles many people appear to have that I am relatively 'lucky' !!

Best wishes

Rimmy

[Soraya_PMR in reply to Rimmy]

VERY lucky I would say Rimmy. Lock him in. Don’t let him go!

[altywhite in reply to Soraya_PMR]

I'm with Rimmy too Soraya....I really do feel for you! My repeat prescription says, on both the 5mg and the 1mg that the dose is variable according to rheumatology, so all I have to do is request which ones I want and I get them. So I love my GP too!!! It's the others in the practice who keep querying my aspirin and omeprazole, and keep asking me to call the surgery, who drive me mad!!!

[Jess_Holmes_0696]

I'm so sorry to hear the issues you are going thru!! I have had the same medical insurance for many years and they have been ok'ing my script for fentonal for years. Now all of a sudden everyone is trying to crack down on the amount of opoids pills given out because to many people abuse it. I have fibro and it's like clockwork when it's time to change to a new patch. So at the beginning of this year I was denied my fentonal patches because I don't have cancer and I'm not in hospice dieing so they would rather make me go thru withdraw and give me nothing as my long term Dr tries to fight to get my meds back. My insurance company desides to fix the problem let's shove a LOT OF OXI'S down my throat a month and all is well. IM SORRY BUT W.T.F!!!!!

[Soraya_PMR in reply to Jess_Holmes_0696]

OMG Jess, that’s dreadful. Don’t know what to say to that!

But you’ve given me perspective with my irritating problem, so thanks for that at least. GOOD LUCK hope you get things resolved.

[Marcy47]

I order my pills on-line, the Pred was reviewed in Jan, but is still at the higher dose I was on last year, 56x5mg per month and 112x1mg per month. I am currently reducing from 8 to7.5 over 4 weeks, so need to work out what I need each week. I just re-order them when I am getting low on either. I like to keep a couple of packets in the cupboard just in case!! Only pain I am getting now is pain in the buttocks, not sure if it PMR or Piriformis syndrome, but improves with movement. My OH has bought me an exercise bike to help me try and build up muscle strength in thighs, doing 5 mins gentle cycling every day to start with, gets the heart rate up a bit!

[Soraya_PMR in reply to Marcy47]

My Dad does a 5 minute exercise bike every day. He’s 86, and previously swam at least 3 days a week until a heart scare. He gave up swimming and he got quite weak and wobbly. I can definitely see an improvement since he started biking. Hope you get the same improvement.

[Soraya_PMR]

Pleased to report I now have 100 x1mg gastro resistant pred tablets in my sticky mitts

One of the other GP’s obviously saw the problem. Hmmm, wonder if I’d be allowed to see her instead?

[PMRpro Ambassador in reply to Soraya_PMR]

No harm in asking - they can only say no...

[Slowdown]

I take a mixture of coated/plain when reducing and I have exactly the same problem, massive bag of 5mgs and two packets of 2.5 and 1mgs. and no sign of plain tabs. It's SO frustrating. No wonder we stockpile when we can... glad you got your stash!