I started on 20 mg of Prednisolone 6 years ago, and after several failed attempts to get lower, have remained at 5mg daily for a year now.
After the (enjoyable!) stress of my 90th birthday party a few days ago, I got the old familiar Polymyalgia shoulder ache, so I took an extra 5mg for 5 days and then went back to 5. What relief, the ache has gone. All I am left with is my usual fluey fatigue and painful wrists. BUT when I requested my repeat Pred prescription (online) a little early to cover the extra dose, the doctor refused it!
Why? Is it because on my regular blood tests I have just been found to have excess parathyroid hormone (10.5) which I believe takes calcium from your bones and I have osteoporosis?
Is it because I am due to have cataracts removed and also have increased eye pressure, both of which my eye surgeon believes may be caused by long term steroid medication.
For either or another reason, surely the doctor should know that I can't just stop taking the Pred. I have tried to contact my rheumatologist Dr Rod Hughes, found via this wonderful group, but his number cuts off when I try it. Any suggestions?
Written by
Purple-Owl
To view profiles and participate in discussions please or .
Try emailing Rod's secretary. Are you on his NHS list or private?
Was it the GP who refused it or was it an automatic denial because you had requested early? They are getting stricter on early repeats to save money and it also covers "drug seekers" but it carries the effect to everyone.
You could speak to your regular pharmacist and explain you have lost a pack so are going to run out and they should replace it since you must not suddenly stop. It is only 5 tablets so they should provide them.
Thanks so much PMRpro for such a prompt and of course knowledgeable reply.
I am a private patient of Rod Hughes. The number I phoned is the usual one to Jodi his secretary but good idea I will email her.
I think the refusal of my prescription request was from the doctor him or her self. I have had so many doctors at the surgery that I no longer know who it is! (For your interest, I requested to go on the list of one of the doctors who I found out had actually studied under Professor Hughes! But they told me his list was full.) What I am is afraid of is that my doctor is going to stop my pred cold turkey. I could ask the pharmacist though.
They can't cut you off cold turkey - if they try you need to make a fuss, it could kill you! You need to start the process to get a face to face discussion just in case. And you could ask for clarification WHY it was refused - you could have needed it early because you were going away and would run out before you got back. That isn't on either ...
That really is appalling and dangerous for you. I have also been stuck at 5 mgs for ages and experience the same symptoms when I try to go lower. I do hope you manage to track down your amazing Rheumatologist. Or a more sensible doctor in your GP practice.Happy belated birthday. X
You really need to know why the prescription was rejected. It was probably the computer saying No for some reason. Can you contact your GP perhaps by using e-consult?
After several similar incidents I pursued the prescription clerk at the surgery (which took some persistence!) and it seems the problem is with the variable nature of the Pred prescription. The new computer system auto-approves regular and in-date renewals but anything variable is referred to a GP. If your own GP is away (on holiday OR like mine in the process of opening a private GP surgery ☹️) then the Duty GP of the day gets it. I suspect faced with large numbers of prescriptions to process the attention given to each is cursory.
The Prescription Clerk suggested a WRITTEN request, so I now deliver a letter precisely detailing regular items and Pred - explicitly detailing any changes and why. So far (twice) it has worked!
I do have a lot of sympathy for our GPs, who are under extreme staffing pressure due to lack of workforce planning and investment - the same being true across the NHS. The wealthy circle will use the expanding private GP services just as they have used private hospitals, so they have little understanding of, or interest in, our public services.
I had an odd experience this week, in that I requested my usual monthly prescription for various ailments including PMR. This I did online, as usual, late on Tuesday night. Imagine my surprise, therefore, when at 0900 hrs on Wednesday morning, I received a text from my local pharmacy telling me my prescription was ready for collection!
Our Medical Centre recently tells people to allow 7 working days for requesting drugs (it used to be 2 but has been creeping up, over the last few years). I put in an early request this month, as I will be on holiday when normally requested. I explained this when I put in for the repeat prescription and I also said that I would shortly be going down to 11 mg, from 11.5 mg.
I don't know why the prescription was acted on so promptly, but am wondering if the word 'holiday' had anything to do with it. No idea!
I do hope Purple-Owl gets her problem sorted soon. It's v worrying when one hears this sort of thing. Belated Happy Birthday wishes ☺️to Purple-Owl, btw.
That is a scary situation to be in Purple-Owl. If you have a prescription you can scan and it has Pred on it, you can send it to Mistry Pharmacy or UK Med (dearer) on line and be able to buy a supply on line. I only have some extra boxes of 1 mg which I could pop in the post to you.
Thanks so much Motilda. It's so kind of you to offer to send your 1mg boxes! I don't think there's any need now, especially as I've noted your info on how to get Pred in an emergency.
Thanks for sharing the results of your enquiries Hopingsail. Useful and inspired me to have another look at my Patient Access pages. Lo and behold I discovered that although I was told the GP had rejected my pred request, it was recorded on a page I hadn't seen as having been deivered!
Did I react too hastily to being told my request had been rejected? To be honest I don't remember receiving it. I certainly haven't got enough pred to last me to my next official due date, September 12th. I have therefore put in a new request and will see what happens.
Sound like you are sorted but I just tried Jody's number and got her answerphone. She had an older number that was discontinued. Right number is 02070313403.
I think the best person to ask why it was refused is the doctor. First step would be to contact the receptionist and explain that you can not suddenly stop your long term meds because of risk of adrenal crisis. If you have no joy there, try the pharmacist for an emergency pack, but if you are in imminent danger of running out, then call 111.
If I request online in less than a month from the last request, it is automatically denied. Could this be the reason? Also, my repeat prescriptions have sometimes been denied when I am due a med review, but the receptionist at the surgery has made sure that I will not run out. Have a look at your last scrip, it usually has a date to say when you are up for review again.
I recently joined Pharmacy2U so I can get my prescriptions delivered by the postman. When you first sign up, you have to order a prescription and it says you should explain that you have ordered early due to joining Pharmacy 2U otherwiseit might be rejected. It said I may have to wait 10 days for my first delivery, but the prescription came in 5. So I think your request was rejected simply because it was earlier than it should have been. A simple call to the surgery should sort it.
It's always worth stating on your request why you need the prescription. I usually say "I have X days left" but "going away so need sooner" sounds like a good one!
Thanks Broseley and everyone who has given very useful suggestions.
I'm glad to say I have now had my Prednisolone order, once refused, now delivered after I reordered online. I think it was originally refused because I had ordered a few days before the due date on my Patient Access site. This was because I had used 5mg extra for 5 days after a flare.
Superdrug deliver my prescriptions for the surgery as I am housebound. I'm most grateful for that NHS bonus.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
COVID - after all this time.
Major surgery and a Vasovagal event
dentist !!!!!!!!!!!!!!!
Pain in my hands since, possibly, reaching 0mg Pred
