Pred awareness among surgeons

[Bitsi]

A heart-warming Christmas story of major surgery, PMR, Pred and pneumonia and of course ignorance of Pred. Could we have specifically Pred Awareness Week targeting for instance surgeons to try to prevent in future this

Medical ignorance is not what you need when terrified you won't walk again at least any time soon

Written with one finger in rehab unit

Smashed down on tarmac pavement, transverse break to R femur just above the knee, split into knee, A+E and surgery somewhere past superb and I am so grateful..But I was only outside because I was ill , had to goto doc, f2f not enough because what I learned to be facial shingles was also affecting my eye which needed examination so needed more Pred to start with. Unfortunately then physio began. I suppose I told them 8 times I couldn't do what the physios wanted without more Pred; my muscles just wouldn't. The trouble was they'd already increased the dose from 10 mg to 15 mg and were rigidly suspicious of a further increase. There was totally unnecessary delay until I got my way - yes, I felt so like being arch-negotiator. 3 days at 20, 2 at 18, back to 15. At which point I came down with a raging chest infection. I realised no point in asking for yet more Pred. Fortunately I’d already asked my niece to bring in my Pred from home in case they wouldn't play ball and no, I did not declare it, so from starting at 23 mg for 3 days I have quietly been taking 3 mg a day more than the docs thought and oh haven't I recovered well and aren't I getting on so well with my rehab and aren't I a very wicked deceitful naughty girl.

after 5 years I know when I need more Pred and reach into he drawer next to my bed. It's not an issue a question and when push comes to shove being treated like a child by those who know nothing about my disease and how I manage it is intolerable.

Diabetics are left free to manage their own insulin so just why was I treated as though I were 6

It got worse I was transferred to a super rehab unit on a strict weaning dose oh doesn't Doctor know best. This is 12.5. sure, sure for some of the most intense physio of my life, a discharge summary that so far as the Pred goes is drivel, copied from a textbook when it should have said GP to resume management oh it's all worked out reduced by 1 mg a month after 10. Does it not occur to these idiots that I have had PMR for five years were I able to reduce by 1 mg a month I should long since have stopped having PmR!

[DorsetLady PMRGCAuk volunteer]

Sorry to hear of your trials and tribulations, and ignorance of Pred is one of the reasons we bang on about carrying a steroid card and having a medical bracelet or similar on your person at all times.

Anaesthetists are aware of the importance of correct doses of Pred, but many surgeons are more concerned about them slowing down healing so want patients as low as possible. As for physios, some know how they affect muscles, but many don’t seem to. Post-operation their main aim is to get muscles working again come what may… which doesn’t necessarily help those in our situation.

To be honest when many Rheumies seem to have problems fully understanding PMR and Pred, not sure there would be any point in an “awareness week” for surgeons, even if it were doable… 😳

PS… agree with  piglette on self dosing…

[piglette]

I know I am often sceptical about the medical profession, but taking extra doses of medication without anyone else knowing could cause problems if , for example you had a major adverse problem for some reason, as the medics would base their knowledge on incorrect information. It is better to argue with them I find.

[random901]

Agree with piglette re coming clean but love your fighting spirit!

[Blackcat1M]

when I had my heart attack I took all my medication in with me to the hospital and said how I took my steroids.

When the nurse came with my morning meds I told her I had my pred she was most adamant I took theirs but I told her that’s how I do it at home and will do my own way thank you.

When the heart surgeon came to see me I told her what I was doing and she said she had no problems with me doing my own steroid and mtx medication.

[S4ndy]

When I had back surgery last year I fought to keep my drugs with me. However, they insisted on locking them in a locker in the room. Only thing was the nurses couldn't open the locker. It was hours before they found someone who could break into the locker. I have quite a drug regime with a couple of less common drugs. They were unable to get those from their pharmacy as they had to be specially ordered. So by the time they got my drugs it was time for me to go home. The upshot of this story is that I am never giving my drugs to anyone in a hospital again. I did however get an extra couple of packs of prednisolone to take home as they did have this!

[PMRpro Ambassador]

I hear you - and it is a problem. DL has said everything else I'd say so I won't repeat.

However - "Diabetics are left free to manage their own insulin" - not always they aren't. There was a program called "Expert Patients" some years ago, based on the idea that diabetics often got into a right pickle in hospital with the ward's inability to provide drugs to order and they know their diabetes better than anyone. You had to complete a course and be approved. But it was failing - and a study was done to examine what was going on. And gosh - it was established that HCPs were very resentful of having the control taken out of their hands so enforced THEIR beliefs on patients, irrespective of them being an EP.

Here in Italy I have a form of pred that the hospital pharmacy doesn't stock - so they come to ME and ask me to use my own. I am allowed to keep my medication with me and take it though I usually happily take what they have if it is the same.

You didn't have an option as it was an emergency but a good plan is to discuss the hypothetical case of such an emergency with your rheumy and get a care plan agreed - always supposing that they understand the need, many don't.

And as for them considering you would CHOOSE to taper your pred at 1mg per month - don't be silly. When we are still on pred after 5 years it is because we are addicted to it!! We WANT to take pred because it makes us feel wonderful, it makes EVERYONE feel wonderful. I wish to goodness I knew what makes them believe that - I felt great in that it stopped the constant pain, feel a lot worse when I'm not on enough and the pain returns. And as for it being a general painkiller as some seem to think - really? Do they even know HOW it works in PMR????

PS - hope the recovery goes well!

[artfingers]

It's interesting to me that hospitals (i'm in the U.S.) insist on having full control of a person's medications but too often do a poor job of it . While my husband was in the hospital last week (low blood platelets as a reaction to chemo) they continuously "forgot" to give him important daily meds like thyroid medicine. I always bring his important meds along and then ask the nurse if he has had his daily dose. They often don't have what he takes (such as liquid gabapentin) and once approved by the doctor, then I have to drive home to get it so I've learned to always bring his meds to my visits. I do make sure it's okay since some meds are contraindicated.

[PMRpro Ambassador in reply to artfingers]

I do appreciate that the ward setting makes it almost impossible to hand out medications at specific times but their attitude of "any time will do and take them all together" can be very contraproductive if a patient's condition worsens. My husband was never told that his anticoagulant and a heart medication he was on MUST be separated by at least 2 hours or the level of the anticoagulant can rise. At its worst the a/c level was 10 times what it should be - luckily our hospital measures the levels. most don't. The surgeon who saw him after he was admitted for bleeding told us if he hadn't taken a few days break from taking his tablets he would have died. On a later admission, they failed to give him the warfarin he asked to go back to and within days he developed a pulmonary embolism. He had been more trusting than me - he didn't question what he was or wasn't being given.

[Odosmum in reply to PMRpro]

The thing that gets me is that they lock your medication away and have you take it all at the same time. For instance, I have one medication that I need to take 1 hour before food, otherwise the side effects are not pretty - that's not at all convenient, so I have to sit and look at my breakfast until the times up.

I was previously taking Lansoprazole - instructions state 30 mins before food. Except in hospital! No wonder it's difficult for diabetics.

[PMRpro Ambassador in reply to Odosmum]

You would think that a hospital might be better at realising it matters WHEN you take something. But no ... And you get a little pile of round white things - woe betide if YOU can't recognise them!!!

[DorsetLady PMRGCAuk volunteer in reply to artfingers]

In UK we are usually requested to take our own medication into hospital (not always possible if an emergency admission) so I always had a bag backed for late hubby.

It’s then checked by duty pharmacist-and locked in cabinet by bedside. If all meds are transferred to ward notes there no reason why they shouldn’t be dispensed when the nurses do the “medication” rounds.. of course that may not be exactly at the correct time for individual patients -but that’s another story.

[HeronNS]

You've been standing up for yourself very well. I completely understand why you're taking a few extra mg of pred. Also, it's inexcusable that physio doesn't understand the particular isssues PMR patients face. One could understand it, perhaps, if it were not in a hospital setting where they must be treating patients with many various serious underlying conditions.

Reminds me of the experience of my d-i-l's father. He'd had PMR for several years and when he suffered a major health crisis (not related to PMR, probably his heart or lungs) which involved hospitalisation and a short term vastly increased dose of pred while in the hospital, after the crisis was over he was promptly and quickly tapered off ALL his pred. I'm not sure at the time he was really aware what they were doing but a family member spoke up for him before he'd gone long without any pred. His base dose at the time was 8 mg. They could have killed him. 😠

Hope you are soon back in a position to regain control of your useful dosage. 🍀