Tales from the Pharmacy...: Yesterday I went to my... - PMRGCAuk

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Tales from the Pharmacy...

Marijo1951 profile image
82 Replies

Yesterday I went to my local pharmacy to collect my methotrexate and 1 mg prednisolone tablets.

The pharmacist was able to give me 12 MTX tablets, half of the prescribed amount. Rather than giving me the usual blister packs, he took the tablets from a container and dispensed them in a small plastic bottle. He apologised and told me to go back for the rest next week. He said they're having problems with supply at present, so I asked if it was because of the big story of the moment and he said 'Probably'. I said it must be terribly worrying for cancer patients and he sighed and said 'Tell me about it!' I hope this situation is just a blip and not a sign of much worse things to come...

When I got home, I found that rather than the 1 mg pred tablets I requested, I had 6 packs of 5 mg tablets. This has happened to me before. I had to make a special appointment with the GP to explain that as I was on 7 mg, I needed twice as many 1 mg tablets as 5 mg. She acknowledged that this was reasonable, and I thought I'd solved the problem. This time I rang the pharmacist just to be sure it wasn't his mistake and, as I expected, it wasn't. I already have a booked appointment with the GP next Wednesday, so I'll bring it up then. I have 11 full packs, plus the one I'm using, of 5 mg tablets (fortunately okay until 2023) and one full pack, plus a few, of 1 mg tablets. I wish I understood why my GPs (all 3 in the practice evidently) have such a prejudice against 1 mg pred tablets!

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Marijo1951
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

The 1mg tablets - my guess would be they aren’t used to prescribing small doses. Usually if COPD or Asthma then 5mg are the norm!

Difficult for some to think outside the box - as it were! 🤦🏻‍♀️

Highlandtiger profile image
Highlandtiger

I think they sometimes just don't think it through - or perhaps have never had to as DL suggests. When I took DL's excel spreadsheet in with me and said I planned to follow that with 0.5 mg drops rather than 1 mg drops my GP (who incidentally is very supportive of the method) asked how I'd manage it..........by cutting them? I explained that until I got to 1.5 mg (which is a long way away) I'd be able to manage with a combination of 5s, 2.5s and 1s. It was like watching a penny drop. He has been happy ever since to prescribe a mixture, always with plenty of 1s.

Marijo1951 profile image
Marijo1951 in reply to Highlandtiger

That gives me a bit of confidence. I just hope my GP proves as amenable to common sense.

in reply to Highlandtiger

I think sometimes they can hook into a "rational" argument like that. I usually get so frustrated after 3or 4 prescriptions being wrong I am on the edge of tears due to that frustration.😡

Marijo1951 profile image
Marijo1951 in reply to

It makes me worry about the mental capacity of GPs. It's hardly difficult to understand after all. My 12-read old granddaughter was very scornful about them when it told her the story. DL suggests above that they just can't think outside the box, but I don't believe that I'm their first patient to be taking a non-standard dose of pred.

in reply to Marijo1951

It does make you wonder about the drs! I suppose they just follow the directives they get. I think the increasingly litigious society we live in must impact GPS now practices are their businesses.

Highlandtiger profile image
Highlandtiger in reply to

I think my GP is really good. He does listen to rational arguments. I know he was on steroids himself at one point as he let that slip once, clearly not for PMR though. I've not been so successful with two other GPs in the practice, one who started me off on what was a ridiculously fast taper schedule and one who told me I wouldn't need to go down in 0.5 mg stages at any stage and questioned why I even thought that. So I try and stick with him. The trouble is, a lot of other patients clearly have the same idea and he's always very busy!

in reply to Highlandtiger

That's the problem isn't it. I am forever trying different drs for different things. It's always better if they have some sort of personal experience of an lllness or the meds.

Yellowbluebell profile image
Yellowbluebell in reply to Highlandtiger

I am running out of dr's to see in pur large practice because some of them are completely useless amd not just with pmr!! I have a list of "do not see unless dying" which unfortunately is growing!!

piglette profile image
piglette in reply to Yellowbluebell

One of our doctors is nicknamed Doctor Death by virtually everyone in the village. My next door neighbour jokes and calls him Dr De’Ath!

in reply to piglette

That's what they used to called Harold Shipman behind his back....😱

Yellowbluebell profile image
Yellowbluebell in reply to piglette

We have one like that and although his blurb says his speciality is "end of life care" I think this is because he is always the last doctor the recent dead have seen!!

piglette profile image
piglette in reply to Yellowbluebell

Love it!

Blearyeyed profile image
Blearyeyed in reply to piglette

😂😂😂😂

That really made me laugh as the surgeon whom did my gallbladder removal was actually called Dr. de'Ath.

My daughter's oral surgeon is called Mr. Leech and my new Cardiologist , Mr. Payne!!

And you wonder why I get a little nervous going to my appointments!!😋

HeronNS profile image
HeronNS in reply to Blearyeyed

In the small town where I grew up there was one doctor called Akin (Achin') and another with a European name mispronounced by Anglos as Cry-sick!

DianeA1 profile image
DianeA1 in reply to HeronNS

We had an obgyn who was named Breeden.

HeronNS profile image
HeronNS in reply to DianeA1

Confusingly I knew of a dentist called Dr Nurse.

in reply to HeronNS

No medical ones but an accountant called Swindells and Mr Orson Cart ....and yes I met him.

HeronNS profile image
HeronNS in reply to

I wonder if his parents knew what they were doing?

in reply to HeronNS

I hope so ...😂😂😂

Blearyeyed profile image
Blearyeyed in reply to HeronNS

Possibly , we did wonder whether my poor school friends parents had done it deliberately as she was called, Emma Roydes ( yes , sort of medical too , haemorrhoids!! ) . Her nickname was just as bad as she played the Cello , and we had alot of Emma's, so we called her, " Legs Akimbo" .

I have a double barrel surname that constantly gets misspelled on official letters , the worst two efforts that made my postman laugh were , ' Hawker Doors' and...

' Mauler Babies' !!!!😨😨😨

(The latter was on the envelope with my first communication from the University of Oxford !)

😂😂😂😂😘

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

You orobably scare them more!!

HJC321 profile image
HJC321 in reply to Yellowbluebell

Omg YBB! That is both funny 😄 and sad 😢 - all at the same time....

piglette profile image
piglette in reply to

GP Practices have been run as separate business since 1948 when the NHS came into being, I think the sooner they join the NHS rather than being an NHS customer the better. I just don’t think any politician is brave enough to take the GPs on!!

in reply to piglette

It would be a big shock if they did....

piglette profile image
piglette in reply to

I does get mentioned occasionally. Perhaps Boris in his new aggressive mode might do it!

Yellowbluebell profile image
Yellowbluebell in reply to piglette

I regularly take on my gp but i think its because i miss court and i quite enjoy it!!

HJC321 profile image
HJC321 in reply to Yellowbluebell

You’re brave 😱 I tend to feel a bit intimidated - then feel cross with myself after the appt! 🥴

Yellowbluebell profile image
Yellowbluebell in reply to HJC321

Not so much brave as very gobby!!

Hollyseden profile image
Hollyseden in reply to HJC321

I'm a bit like that too. Also I go blank and forget half the stuff I wanted to ask about. The10 minute appointment limit distracts me.

HJC321 profile image
HJC321 in reply to Hollyseden

Yes exactly - I have before now made a little list of reminders 🤣 - do feel a bit daft though and wonder if he’s adding to my notes “Dementia setting in” !! 😆

Hollyseden profile image
Hollyseden in reply to HJC321

😂 yes I wonder if doctor does take such notes. Since I never remember lists I just ramble so he could be writing that about me anyway 😂

Highlandtiger profile image
Highlandtiger in reply to Marijo1951

And it is a standard dose for us!

Marijo1951 profile image
Marijo1951 in reply to Highlandtiger

I know. Any dose from 80 mg to 0.5 mg is somebody's 'standard'!

jinasc profile image
jinasc

Please tell me if you find a Pharmacist who is not worried and is not having the same problems. My 'ticker' tablets are changing manufacturer every month.

When Pharmacies like Lloyds, Boots and other large ones are having problems - what next is anyone's guess at present. 🤔

As a member of the awkward squad, a person who when the tablet they started on is changed and made by another manufacturer runs into problems. My Pharmacist explained why that happens, although it has the same contents. 'I only have another 4 like you'.

Marijo1951 profile image
Marijo1951 in reply to jinasc

The poor fellow seemed rather harassed. Unfortunately unreasonable customers will probably lose their patience and blame their pharmacists for the shortages, making their lives even more difficult. I hope we don't see mass resignations like in teaching!

in reply to Marijo1951

People who are unreasonable are suffering stupidity if they don't realise why. The most overused moniker in recent British history.😱

Marijo1951 profile image
Marijo1951 in reply to

Probably best not to get into the subject here, but my goodness, where will we be this time next year?

in reply to Marijo1951

I agree. The above directly impacts us re the possibility that certain meds may be hard to obtain. I am stocking up on insulin so I have a month ahead.

Marijo1951 profile image
Marijo1951 in reply to

Good luck with finding what you need. Sick people shouldn't have all this extra worry to cope with. And it isn't all just irresponsible scaremongering as J R-M would have it. I trust the BMA and King's Fund and other professional bodies - who are deeply concerned about the possible outcome and have conducted detailed research - a million times more than I trust him.

Sorry if this counts as 'off-topic' and I realise it's of no interest to non-UK members.

Highlandtiger profile image
Highlandtiger in reply to Marijo1951

It's not off topic when it is likely to affect our health and I agree 100% with you.

Marijo1951 profile image
Marijo1951 in reply to Highlandtiger

I know, but I don't want to start one of those endless online battles which we've all experienced over the last 3 years! However this forum is well moderated these days and I'm sure they would nip it in the bud.

Highlandtiger profile image
Highlandtiger in reply to Marijo1951

I absolutely agree and we are very lucky to have all the moderators doing their (sometimes very difficult) job. Without them we'd be in a much worse place.

in reply to Highlandtiger

Thank You Highland Tiger 🌷

in reply to Marijo1951

Thank You Marijo 🌷

Yellowbluebell profile image
Yellowbluebell in reply to jinasc

My pred has been swapping manufacturers for about a year now. Each monthly prescription is different.

Highlandtiger profile image
Highlandtiger in reply to Yellowbluebell

Me too! But different sized packets are upsetting my normally neat storage system! 😉

Yellowbluebell profile image
Yellowbluebell in reply to Highlandtiger

Yep me too!! They wont even stack in the chemist bag properly.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to jinasc

Being a Yank, the dreaded British Halloween Mystery this year doesn't directly affect me, but I think the Charity should be coming up with some plans and schemes so you all will be assured of being able to access your meds until the situation settles into a "new normal", and that a discussion here is warranted.

Marijo1951 profile image
Marijo1951 in reply to GOOD_GRIEF

I'm not sure that our little charity has that sort of clout. As jinasc has said, even the biggest pharmacy chains are having problems sourcing supplies. I've been hoarding food, but we can't hoard medication as easily as tins of tomatoes and chick peas. It's deeply worrying and contributes to the overwhelming sense of anxiety.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Marijo1951

I understand.

But not even discussing the issues can't possibly lead to developing coping strategies, whether with the charity or within the user's group.

Just my opinion, and I'm obviously an outsider.

Marijo1951 profile image
Marijo1951 in reply to GOOD_GRIEF

Thank you. You obviously have a sense of fellow-feeling. It has occurred to me that, as prednisolone is a generic drug and also cheap to make, it could probably be made here if it isn't already. However whether we could produce the quantities needed is another question. If the worse comes to the worst, there will probably be some sort of centralised distribution and monitored prescribing, but let's hope it never gets even near that situation.

Constance13 profile image
Constance13 in reply to jinasc

I'm like you. It takes quite a long search to find the 'correct' tablet which won't upset my system one way or another and it annoys me like mad when the pharmacist say "they are the same as the others" - they are NOT!

When I go into hospital (which is quite often, unfortunately) they give me their own brands. I always ask if I can take my own prescribed ones - they never agree (the nurses say the doctor wouldn't know what I was taking (even though I have handed them a list). Consequence is I take my own tablets and chuck the others! I never take a tablet unnecessarily so.... (but what a waste)!

HamishPMR profile image
HamishPMR in reply to jinasc

Your tablets change every month because your pharmacy buys the cheapest available at that time. As a retired pharmacist, I admit, I hate the practice. One month the tablets are small and white, next month pink and oval, etc etc. This must be very very confusing for old very old people. The simple solution is for the government to regulate the specification of each preparation, i.e. strength, shape and size and markings. Enough Hamish, just a bee in ma bonnet that I have had for 50 years or was it when Enoch Powell started to import drugs from Poland.

Marijo1951 profile image
Marijo1951 in reply to HamishPMR

I find that some brands are very crumbly, even disintegrating into powder inside the blister pack and, of course, it makes it difficult to cut them.

HamishPMR profile image
HamishPMR in reply to Marijo1951

The problem is that there are a lot of cheaper brands in the UK from from for example India and Even Malta. If you are going to be cutting your tablets to produce 0.5mg it is best to ask your pharmacist for a "good" brand of generic like Alpharma or Sandoz. If he says that he cannot ask him if you may return them if they break up. He has the ability to return faulty goods to his supplier for credit. Best of luck but be assured the pharmacist will know a good brand from a cheapie.

Marijo1951 profile image
Marijo1951 in reply to HamishPMR

Thank you for the excellent tip. At present I have Actavis 5 mg and Wockhardt 1 mg. They both seem very good quality and haven't crumbled so far. If I get any more crumblies I will take them back as you suggest.

jinasc profile image
jinasc in reply to HamishPMR

You are an echo of a Pharmacist, (now retired) who used to be on the NCP's committee. The rant's I have listened too for over two years...........I can't count.

Christophene profile image
Christophene in reply to jinasc

I have the same problem in the United States. My hometown little pharmacy never has enough inventory to completely fill a prescription, always requiring a return visit. I could demand it be delivered; always will be available after 11am tomorrow. So it's not a shortage; I think the owner doesn't want to spend a dime more to keep inventory full. I can understand that if it's something unusual, and rarely prescribed.

It is sad however because of the draconian rules regarding opiates in the US. A newspaper article mentioned that hospice facilities do not have enough IV morphine for their terminally ill patients, and oral morphine and suppositories are not liked by the patients. Drug companies are only manufacturing in very small doses. Distributors can't therefore get them without a great deal of competition. And neither can pharmacies.

A number of physicians have lost their licenses because of "over prescribing"

and the rest are terrified the same will happen to them. My own GP, a very kind man, told me, he was under investigation; that the State Drug Enforcement agents just come in and rudely takes handfuls of charts and occupies his office to look for over prescribing. He had to go before the State Medical Board with an attorney twice. He did not lose his license thankfully, but can only prescribe an opiate 2 times a year to the same patient for a flare up of whatever. What if the pain is chronic and everyday is a "so- called" flare up.?

If one has been on an opiate for a length of time, he/she will be dependent on the drug; the answer to this has been Suboxone, containing a very strong opiate and naloxone, the antidote to prevent overdose. So you can get high, but just not accidentally or intentionally kill yourself.

None of this seems to be a problem on the black market; this has been a grave problem for patients; some have resorted to suicide, street heroin, some have had to stop working b/c they cannot perform their duties in the degree of pain they are in and some have lost their businesses b/c they can't do the physical tasks required.

This applies to post surgical patients in hospital, 3-5 days is the limit of opiate relief.

There has been some pushback from patient groups and a physician's group that has named itself , " Doctors with Courage." But the genie is out of the bottle..

Portugal on the other hand had a very bad problem with opiate overdoses; that govt. decided to deregulate all medicines, and drug overdoses have fallen dramatically. Something to the "forbidden fruit." theory.

No problem to drink yourself to death with alcohol . Doctors had training for almost a decade, but bureaucrats can substitute their judgement for that of a well trained physician, or even a not so well trained physician. There were a handful of unscrupulous doctors only taking cash for a prescription, or trading opiates for sex, but that was very limited.

Punishing people for being in pain. Terrible. Cancer patients are exempt. I doubt we would want Prednisone managed that way.

jinasc profile image
jinasc in reply to Christophene

I have had to stop and collect myself. I knew the USA was in a bit of trouble, but never thought it was so bad. There is nothing I can say to help, I can just hope that it will come right sometime. Stay as hopeful that a better outcome is on the horizon.

piglette profile image
piglette

My pharmacist has been having trouble with 1mg for a long time and now seems to give me chopped up bits of packets, several in a box. I haven’t a clue what the sell by date is as it is all crossed off.

Yellowbluebell profile image
Yellowbluebell in reply to piglette

Thats naughty not giving you a date. Insist before you leave the pharmacy that they date it. If nothing else it will amuse you while they look for all the dates!! Sorry i shouldn't reccomend winding people up just because i enjoy it!!

piglette profile image
piglette in reply to Yellowbluebell

Someone else picks up my meds unfortunately. My pharmacy when I get there is actually very accommodating and probably would enjoy the chat about their problems.

Hellyowl profile image
Hellyowl

I have decided that if I have trouble with my prescriptions because of 31st October I am going to take up residence in my Brexit supporting MP's office until he sorts the problem out.

Maryis80 profile image
Maryis80

Think I must be lucky, our village pharmacy seems to be ok at present. At the surgery I think it is a clerk who produces the repeat prescriptions and having seen a doctor signing them at speed I am sure he didn't read them all!

Telian profile image
Telian

Fortunately I’ve never had any problem with doses, I know they have to have a reason and on my records it says

‘to be used as part of a reducing regime as directed by Rheumatology’

I believe they’re accountable to the local governing NHS bodies more than ever (CCGs). Shame you have to see the doctor again when it could have been changed without, it being their error! Appointments are precious as we all know.

I also ask the doctor to repeat what they’re prescribing as a double check, as mine go electronically. All the best.

Marijo1951 profile image
Marijo1951 in reply to Telian

The pharmacist did offer to change them when I called him but, as I already have a GP appointment next week, I thought I'd have a (second) go at re-educating my doctor.

Telian profile image
Telian in reply to Marijo1951

Good luck!

PMRpro profile image
PMRproAmbassador in reply to Marijo1951

Except he'd have to chuck them - what a waste.

Marijo1951 profile image
Marijo1951 in reply to PMRpro

I know. This has occurred to me and, as long as the use by date is a good way off, I've tended to think I might as well hang on to them because it will be a while before I'm below 5 mg. But, thinking more carefully, I've enough 5 mg tablets for about 11 months and, from my current dose of 7 mg, it's quite likely that I'll be below 5 mg before then, so somehow I must manage to convince my GP that it's important that I get my 1 mg tablets.

PMRpro profile image
PMRproAmbassador in reply to Marijo1951

His problem - but the 5s will still be handy ...

Kaaswinkel profile image
Kaaswinkel

My understanding is that GP s are there to serve their patients. How bad it is that you have to struggle to get what you need and spend your precious energy on standing up for what is good for you. Without us, and other patients, the GP could not run their business, could they! Complete sympathy with you.😊💐

Marijo1951 profile image
Marijo1951 in reply to Kaaswinkel

Thank you, and I agree with all you say. I do wonder how they will be when my dose is below 5 mg. Even when they do manage to prescribe the 1 mg tablets, there are always fewer of them than the 5 mg ones.

PMRCanada profile image
PMRCanada

My former rheumy refused to give me 1mg tablets as she expected me to stay on her textbook taper. Thankfully my GP was willing to give me 1mg tablets, and told me just to not mention it to the rheumy.

In this case it had nothing to do with shortages or supply of the medication, rather a stubborn, young rheumy set in her ways (hence another reason she is no longer my rheumy).

YogaG profile image
YogaG in reply to PMRCanada

Do you know if we can get the coated , slow release prednisone in Canada ?

PMRCanada profile image
PMRCanada in reply to YogaG

Nope! So I purchased empty coated capsules and stuff my uncoated pred tablets inside (another member on the forum did the same thing, but hers were less expensive, both purchased online from US manufacturer).

Now I can take the first part of my split dose at 11:30pm, instead of getting up at 2am every morning. I take the second half of my dose (uncoated tablets) around 12noon with lunch.

If you do a search for coated capsules, our previous post may come up so you can get the link posted by the US forum member.

If there’s a will, there is a way!

Marijo1951 profile image
Marijo1951 in reply to PMRCanada

We certainly have to learn to be resourceful with these ailments!

YogaG profile image
YogaG in reply to PMRCanada

Thx for the info! I guess we’re kinda behind the times re: coated medication!! Wonder why ???

PMRpro profile image
PMRproAmbassador in reply to YogaG

There is no "coated slow release" pred anywhere, The enteric coated stuff is to reduce gastric problems and isn't reliable in terms of the speed it is absorbed - which doesn't matter really for us. The Rayos/Lodotra pred is coated to allow for delayed release of the entire dose all at once, just 4 hours after taking it.

Behind? Probably because it costs more and the insurance won't pay for enough to make it financially viable.

Pollypuds profile image
Pollypuds

It's annoying isn't it, I've had same with my doctor, when first

Diagnosed was like trying to prise his teeth out to get enough to last a month, now I am down to 4mg everytime I have to add don't forget I need enough to last a month!

Getting increasingly scary the whole medicine supply chain being disreputed. Talk of ordering extra body bags as expected death toll to rise somehow doesn't concern our mediocre politicians, no doubt they have access to all the medical supplies they need!

Marijo1951 profile image
Marijo1951 in reply to Pollypuds

We really shouldn't have to plan strategies to make sure we receive our basic needs!

Christophene profile image
Christophene in reply to Pollypuds

For sure.

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