Am I really expected to drop 9mg?

[CT-5012]

After having a problem getting 1mg tabs of pred I collected my prescription this morning....56 1mg tablets with the instruction take 1tablet daily with or after food. No 5mg tablets at all. On returning to surgery I find that we now have a repeat prescription service who made the decision that I didn't need 5mg as I was reducing my dose. I will find this person grasp them warmly by the neck and squeeze until their pips squeak. No stress then. 😫

[PMRpro Ambassador]

Good lord - what utter ignorance!!! I would join you on your quest were I closer.

Good luck - I assume you DO have a script for the requisite 5mg tablets?

[CT-5012 in reply to PMRpro]

Yup but said was filled two months ago when I was on 15, 12.5 then 10 for last two weeks pred marked as ongoing/tapering. Obviously someone did not check. Something wrong with the system here, will be investigating, calmly and with my sweetest smile. 😊

[DorsetLady PMRGCAuk volunteer]

Yes, please do! Tell us where you are and we'll come and give you a cheer!

As I said in another post today - what a plonker!

[CT-5012 in reply to DorsetLady]

Have calmed down now. See reply to PMRpro. We are now being cared for by clowns. 🤡

[DorsetLady PMRGCAuk volunteer in reply to CT-5012]

Add in technology!

See my comments further down about online repeats!

[piglette]

It seems a sort of default of one tablet. I have that for all mine irrespective of the size. I just ask for the ones I want and ignore the instructions.

[CT-5012 in reply to piglette]

Me too, have an emergency prescription in progress for later which I hope will be OK. Next time I speak to my rheumy I will ask for a letter saying give the woman what she asks for we both know what we are doing!

[piglette in reply to CT-5012]

I can order on-line now which is great. I am offered 100 of each size and I just tick the one or ones I want. The pharmacy then gets the prescription automatically. It works very well.

[CT-5012 in reply to piglette]

Hi piglets, Our GP have an online system for repeat prescriptions but only for the same dose, pred varies so is not considered a repeat but will suggest this would make life so much easier for those of us on pred. It is a large group practice I can't be the only one with this problem. Many thanks for the information.

[Hidden in reply to CT-5012]

Hi Ct. I too use online prescription ordering and when I have something that is not on my regular repeat there is a section at the bottom which says comments and I just add them on there and no problem. Hope this helps. D

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Yes I did that on one if my online repeats, only to be told by the pharmacy that they don't get to see the comments box! Not a lot of good there then!

So I keep a spare hard copy 'just in case'.

Ain't technology great!

[Hidden in reply to DorsetLady]

My online prescription service must be different as when I send it it goes to the Doctor for approval before its forwarded to the Pharmacy. Not all are the same apparently. I don't know what I am doing reading this as I am usually bedded down by now! Good night

[piglette in reply to Hidden]

My surgery approves my prescription before forwarding it to the pharmacy too. I know some people get things like HRT automatically prescribed direct by the pharmacy as a repeat prescription, but I think it depends on the actual drug.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi

My surgery has its own pharmacy - we're in a village! So pharmacy team get the request, then print off paper copy for doctor to sign. It's on the EMIS programme which means you can make online appointments as well - but only 2 weeks in advance.And supposedly see your test results - but that doesn't seem to work!

[piglette in reply to DorsetLady]

My surgery use EMIS too but I believe they are upgrading soon, Oh no. The on-line appointment bit is rather limited. I have now signed on to see my test results which really is good as it shows all my blood tests with graphs. Also medication given and other stuff. Worth signing up for it I think.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Yes definitely. Wish they'd had it when I was on Pred and having regular blood tests early days.

Some surgeries seem to encompass technology better than others. Don't know if some like to keep the mystique so you have to speak to someone to get results. But in this day when it takes 3 weeks to get an appointment you'd think they'd be only too pleased to relieve the staff of some of the work!

[piglette in reply to DorsetLady]

I believe that by law all surgeries have now got to offer a limited amount of patient data on-line. I think by 2020 they must offer all of it.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Good. I did ask receptionist as per advice on surgery's web site - but got a non-commital shrug of the shoulders - and a "oh, don't know anything about that!"

Shall ask my GP at next appointment! He'll probably just say "yes" to shut me up!

[altywhite in reply to piglette]

How do you sign on to get test results?? I haven't seen that option on my EMIS page.....that would be great!!

[piglette in reply to altywhite]

You have to ask your surgery to add the facility. I had to fill in a form and show my passport too.

[altywhite in reply to piglette]

Thanks piglette, I'll give it a try and see what they say. ☺

[piglette in reply to altywhite]

Good luck

[piglette in reply to CT-5012]

Hi CT, I have mine listed as three different items and just mix and match as a repeat prescription.

[CT-5012 in reply to piglette]

Thanks piglets will try that. 😊

[piglette in reply to CT-5012]

Good luck

[Rugger in reply to CT-5012]

I started off having to ring the practice to speak to a doctor and ask for exactly what I wanted. Then I convinced my usual GP that it would be much easier to put all combinations on repeat - all sizes and plain or gastro-coated. I now order online, just exactly what I need, like piglette. We're hardly going to gobble them up like sweeties, are we?! It saves the NHS money, as the tablets cost much the same whether they're 1mg or 5mg, so 1 x5mg + 4 x1mg costs around 15p, while 9 x1mg costs about 27p/day! The gastro-coated are about double the price, but the maths is the same!

Like Dot2017, I can also write 'free text' on my repeat requests. Ususally, I just write "Thank You"! I think it might help.......!

[DorsetLady PMRGCAuk volunteer in reply to CT-5012]

If only!

[nevagivup]

Hello

I insisted on getting gastric coated 5 mg and 2.5 mg tablets and my doctor gave in. They try to claim there is no benefit to be gained from gastric coated tablets (well they cost a little bit more) but I can testify that large doses of 1 mg at a time do cause me acid burning. I wont take a proton pump inhibitor because that is simply another medicine not required unnecessarily. Depending on the dose I am on, it will be a combination of any or all 3 dosage tablets. Try talking to your doctor and be firm about what tablets suit you. good luck.

[66Mac]

It must the same wherever you live in the uk - firstly you have to run the gauntlet of the reception team at the doctors - what's your problem ? ,what you want to make an appointment - is that this month ha ha ?etc etc totally unhelpful.

Then you see the doctor who's ok but doesn't really have the time .

And then the automatic prescription goes round to the chemist or supposed too ! Then it's sorry you're a day early , you must have plenty of prednisolone left , as if I'm going to bulk on 1mg tablets !!!!!!! the computer says no , there's no prescription for you , the doctors not signed it blah blah blah .

Surely it's not that hard to have a joined up service ,when the pharmacy is 20 meters from the surgery .

It's no wonder to me that the NHS is in a right old pickle ,if I ran my firm like that I'd be bankrupt in no time !!!!! Rant over

[ValFF53]

I know how you feel. I told my GP is was taking 3ngs and reducing very slowly and she changed my repeat prescription to 56 x 1mg tablets monthly!!!

[BonnyQuine in reply to ValFF53]

Typical!

[RheaV]

My doctor wrote a prescription for 10 mg for 2 weeks, 9 mg for 2 weeks, etc. So I got a bottle with 680 1mg pills! I asked why I couldn't get 5s and 1s, and their response was that people may get the 5s and 1s mixed up, and therefore take the wrong dosage! Well, next time I will insist! Besides, I'm not tapering that quickly anyway! Can you imagine how long it took to count out 680 pill??!!

[Rugger in reply to RheaV]

.....and at 3p or thereabouts per tablet, it cost the NHS 30p / 27p /day instead of 6p for 2 x 5mg tablets!!

[RheaV in reply to Rugger]

Well, I'm in Canada--so it doesn't work that way!

[Rugger in reply to RheaV]

Sorry about that asumption, RheaV. However, even in Canada there must be a cost implication to someone / organisation in obtaining more tablets than necessary? As you say, even the time it took to count them has a cost!

[RheaV in reply to Rugger]

You're right about that. There is always cost involved. And since it takes time to count out 680 pills, I'm surprised that they didn't even ask about giving me 5s!

[PMRpro Ambassador in reply to RheaV]

Obviously your pharmacists have a lesser opinion of patient's intelligence!

Wonder if they had every tried swallowing 10x1mg pred tablets? Yuk!!! How to improve patient compliance...

[RheaV in reply to PMRpro]

[Jackoh in reply to RheaV]

How old and responsible do they think you are! - un- believable!! Or unfortunately having had similar problems to those on this thread- believable!!

[CT-5012 in reply to RheaV]

😂

[Hollyseden]

Just this week my dose was changed from 15mg to 60mg so for a few days I was taking 12x5mg tablets 😑 Washed down by a load of water did nothing for my digestive system in spite of omeprazole. Asked for 20mg tablets (thank you doc) but hubby had trouble finding a chemist who stocked them. Settled for half the prescription and get the rest on Monday.

[BonnyQuine in reply to Hollyseden]

Yes, perseverance is essential. Just as well we're all fit and have plenty of stamina, then!

[Hollyseden in reply to BonnyQuine]

😂

[DorsetLady PMRGCAuk volunteer in reply to Hollyseden]

Trouble is the high dose tablets are much more expensive to manufacture (due to less being produced) than the 1mg and 5mg so most chemists don't hold them in stock.

In the U.K. the price per 28 pack of tablets is in the region of

25mg - £8.75

5mg - 81p

1mg - 74p

[Hollyseden in reply to DorsetLady]

Wow That's quite a difference. Once again thank you to my doctor for prescribing them when I asked. I had no idea of the cost involved but didn't enjoy taking 12 tablets at a time 😐

[PMRpro Ambassador in reply to DorsetLady]

Not as dramatic when you consider that 5x5mg tabs for a month works out at £4.05...

[Gaijin in reply to DorsetLady]

I wish I could buy some 1mg. tablets while I'm in London. The smallest denomination is 2.5 mgs in Spain. I think it's for that reason that the rheumatologists never prescribes reductions of less than 2.5 mgs. The last rheumi I saw asked me how it was possible that I was reducing by 1 mg...by cutting 2.5 tabs in half I said. It's obvious they don't see many PMR / GCA patients and are clueless about the tapering method that these diseases require.If they were up on it, they would demand 1 mg.tabs to be sold here.I wonder what they give kids.

[EdithWales in reply to Gaijin]

You can. I am looking at mine now. Prednisolone. 1mg

Gastro-resistant tablets made by Alliance Pharmaceuticals in Bath

You need the gastro -resistant sort to protect you gut

[Gaijin in reply to EdithWales]

Thank you Edith. I could try getting a prescription from a private GP in London, I guess, but probably they'd want some evidence that I have PMR , etc..I'm only going to be there a week.

I'm doing ok reducing 1.25 mg at a time and according to PMRpro, I could even cut the 2.5 mgs in 4 parts. The fouths wouldn't be very equal but she says it doesn't matter as they equal themselves out. It's a pain, though, handling such small pills..sometimes I drop one and don't even bother looking for them and wait till someone vacuums .

[EdithWales in reply to Gaijin]

You can take your current

tablets with you if you don't have your prescription. You should always carry something with you in case you have an

accident and the hospital needs to know.

Any GP should write you a

private prescription and there is a private on line service.

Enjoy London

[Gaijin in reply to EdithWales]

Thank you, I will try that. i will take extra with me, too.

[CT-5012]

Sanity has returned, I am now the proud possessor of 76 5mg tablets labelled take as directed by specialist. Yay, result!

Thanks everyone for your comments and support. 😊

[altywhite in reply to CT-5012]

That's what the label says on my prescription too.... it does save a lot of hassle. A!though there's always the jobsworth pharmacist who wants to have the 'chat' about my medications!!! 😀

[altywhite]

Oh good grief, that's just ridiculous!!! You'll have plenty of offers to help pips sqeak methinks!! I keep getting asked at the pharmacy whether or not I want to join their order and collection scheme. I just smile nicely and tell them not just now as I am on a variable steroid dose and am happy to manage my own. I order online through EMIS and pick up scripts from my surgery.