Hi, so having seen GP this week and agreed I'd stay on 2mg. I visit pharmacy. My Pred repeat prescription has not arrived from my GP and as such refuse to order any. Told me to go 111. I did this on-line was issued a code to this pharmacy for an emergency prescription (no more than 6 steroids, 1mg) the pharmacist still resolute in their refusal. They advised me to go to A&E for emergency Preds !!! This was yesterday it's now Sunday and a bank holiday. I had plans for this weekend now I can barely rise and feel completely isolated by the above experience.
What would you do: Hi, so having seen GP this week... - PMRGCAuk
What would you do
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Pincus
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That is awful from your pharmacy. I think you need to get your pred so may have to go to A and E if 111 cannot help further.
Good luck to you and I really think you should make a complaint
A pharmacist should be the one person who knows you can’t just stop Pred, and even if they can’t give it to you, they should have helped you more. To then get an official request to issue you some Pred (only 6 tablets too!) warrants a complaint and a letter to your GP telling them that you’ve had to use an overwhelmed A&E service as a basic dispensary. What was their reasoning after the 111 request? Was the pharmacy a chain or independent? Do get some today.
A small local pharmacy. I hope to find some today . Many thanks
Pincus, this is appalling, unprofessional treatment from a jobsworth and I'm so sorry you are having to go through this. If my sums are right you have enough for today and probably tomorrow? I would phone my GP first thing tomorrow morning and ask for an emergency appointment for that day to be given a paper prescription for prednisolone so that you can take it to the pharmacy immediately.
I would also ask for an extra month's supply to have as 'emergency rations' so that you are spared the worry of this happening again.
Deep breaths and hang in there!
Maybe it's me ,,,with the wrong maths,,I do not have any and am feeling it. I may have to hold tight till after bank holiday. Doubt A&E in my best interest. Yes it's been a shabby journey
Um - it's a public holiday tomorrow, all over the UK.
Oh yes, sorry but I'm trying to reduce myself and don't seem to know what day of the week it is at the moment! But I would still try to get a spare month's worth of pred as soon as possible. It's a comfort blanket if nothing else.
Hope you get it sorted soon, Pincus.
If you rang your GP surgery it should give you their out of hours doctor and you can request them that way urgently.I am shocked the pharmacy refused though, if you are a regular there they should know and give them to you to tide you over until Tuesday after the bank holiday.
That is pretty appalling and personally, once you are sorted, i would go elsewhere after you get your prescription and make a complaint. You can't just stop pred like that. Although I am unsure what your dose is expected to be at the moment.
Was it the pharmacist who said No? Prescribing by health professionals other than doctors has been in place in the UK since 2006. Nurses, pharmacists, dentists and some other healthcare professionals are now able to train as independent prescribers, meaning they can prescribe any drug within their competency, including controlled drugs. There are an estimated 19,000 nurse independent prescribers in the UK, and many more supplementary prescribers from other professions such as optometrists, midwives and physiotherapists, who prescribe to protocol or under supervision of a doctor.
Always wise to build up some spares
in reply to Daffodilia
Yep, supply chain could go bust any day in US. That why I am seriously looking into alternatives here Stateside. We have the dependable US government sponsored drug cartels moving a million people into this country each year. Mexico is a great source for medication. I don’t desire to have the nanny state to protect me or insurance companies to save money not filling vital medications that allow me to work. Been suffering miserably reducing way too fast. Last night had to cheat and take 10mg to go to work today. To be active, I need 10mg otherwise I am a prisoner in my own home. Still waiting to see a Rheumatologist. They don’t care about you, so why should I even pay them? Even this new Rheumatologist refused to fill my prednisone. They desire to see those enzymes high as hell because they are too incompetent to trust a previous Rheumy or even review my previous blood tests.
They are doing evil stuff here. Seen it first hand with my mom
That's your opinion - but to be honest, a rheumy who accepts a diagnosis without their own evidence is perfectly reasonable in mine. PMR isn't the disease, it is the name given to the set of symptoms caused by an underlying disease process, It MIGHT be autoimmune as is the case for what we discuss here but it could be something else, including cancers and inflammatory arthritides. Pred may give you relief, but it isn't suitable to use as a painkiller until you know what you are dealing with.
in reply to PMRpro
So the rheumy should just ignore previous blood work that shows elevated enzymes the only empirical data used to confirm PMR?
I have no issues with more blood work but causing a flare deliberately is beyond cruelty
No - that isn't what i said at all.
Not sure what you mean by " elevated enzymes the only empirical data used to confirm PMR" as it isn't correct. The diagnosis of PMR is a clinical one and the blood tests are merely a supporting cast. There is NO test that "confirms PMR" except maybe a PET-CT that demostrates inflammation particular places - and the presence of any pred in the body suppresses the signal they are measuring.
There is usually only one enzyme that is looked at - a liver enzyme that is often raised in PMR but not always and it is also raised in other things, ESR - the sed rate is a physcial test, the speed at which the red blood cells settle when left undisturbed and the CRP is a protein that contributes to that ESR reading. Both ESR and CRP are extremely general tests, many things can cause them to rise and they merely indicate there is inflammation/infection somewhere in the body but not where or what. And up to 20% of patients don't have raised values.
The true diagnosis of PMR requires a physical assessment and possibly certain scans if they are available. The patient being on pred interferes with those scans, and actually also with the physical examination as it suppresses the inflammation and reduces the symptoms so movement may be easier and pain less.
She is being thorough - not cruel.
in reply to PMRpro
I stand corrected
in reply to PMRpro
First gal did the physical X-rays but they had to help me get on the table. They can review those. Nothing has changed but likely want to charge me again
Daffodilia in reply to
Remember we do all pay for our "nanny" state through our National Insurance taxation in the UK - it is free at the point of delivery not free
in reply to Daffodilia
Lol, I was taught nothing worth having besides Grace is free.
Daffodilia in reply to
Indeed
Hi Pincus. I've had a similar experience a few days ago. As we're away in Spain for a month, I requested 2 months' supply of all my meds to cover me when we get home. On delivery there was only one month's worth and 3 items were missing, including my Prednisolone. Rang the GP again and the receptionist said she'd arrange for the missing meds to be sent to the pharmacy. Took delivery of the these a few days later but still no Pred! Rang yet again, but surgery was closed for some reason! Eventually got through on Thursday and was promised she had sent the px over to the pharmacy while I was on the phone speaking to her. My OH went to collect them on Saturday morning and, low and behold, they hadn't received the px! We were flying Saturday afteroon! Fortunately I had spare tablets and just enough to tide me over til I get home, but 'they' don't know that! My daughter will ring them for me in the week and get it sorted. I think all receptionists need to be made aware of the importance of Prednisolone to us (and other meds to, of course).
I hope you get sorted as soon as possible Pincus. Take care x
I have learnt to keep a back up of tablets after a similar incident. I know this is not ethical but could there be anyone near to you that like me have spare tablets and were willing to share.
I was diagnosed with PMR by a rheumy a year ago. Fired her.
I have no issues with these Rheumy causing a major flare up as long as they put me on short term disability while they force a flare up but they did think about that when the denied me prednisone for three months
I am close to quitting my job, but then I have zero insurance for myself and my wife.
Conundrum no doubt
Wow, I just assumed they would say well maybe you can no longer work as an engineer but you can still work as a telemarketer
Case dismissed
I am very well paid, only working to build up some money for my wife when I pass. She is 60, I am 58. She did not work much or pay much into SSI. Trying to hang on until 62, when she can draw off my SSI instead of hers.
I am not very hopeful, this PMR is way more than I ever imagined
Bless you, great advice
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