Reducing - again: Hello lovely people I am now 4.... - PMRGCAuk

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Reducing - again

Pippah45 profile image
53 Replies

Hello lovely people I am now 4.5 weeks post Super Path Hip replacement and doing well. 7mg Pred which I have been on for months (expecting hip op a bit sooner) Question is when would be a good time to start trying to reduce again? I am almost pain free (no meds for it anyway) - starting off the day and getting up after sitting takes a while to get going. I see the surgeon next week presumably for being signed off so can ask him but I have more faith in you peeps really :) TIA.

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Pippah45 profile image
Pippah45
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53 Replies
jinasc profile image
jinasc

If it was me, I would be waiting another month before trying 1/2 a mg drop. My reasoning is that your body has been through more than it expected and so far you have recovered pretty well, so don't rock the boat - just slow and steady. 5 weeks is no time at all in the great scheme of things.

Pleased to see you can now say goodbye to "hip hop..............." 😬

Pippah45 profile image
Pippah45 in reply to jinasc

That sounds very sensible advice thank you :)

PMRpro profile image
PMRproAmbassador

I'd be in no hurry at all - that pred is doing the job of the adrenal glands and cortisol. Probably more important than PMR. And people often find that the PMR was being poked into life by the hip pain - once it is gone they are able to reduce without complications from that

Pippah45 profile image
Pippah45

Thank you again for your wise words. Immediately post op the pain was pretty horrible which they said the pred was partly responsible for not helped by me being allergic to NSAIDS and disliking morphine! But it soon dispersed by Day 3 I was human again :)

PMRpro profile image
PMRproAmbassador in reply to Pippah45

WHY did pred make the pain worse? No - I had morphine once - never again!!!!

Pippah45 profile image
Pippah45

I am not sure if I understood exactly - but got the impression that Pred was struggling to cope with the excess load of pain caused by the operation - I know it made sense to me at the time! I was given a bit extra on op day but no idea how much. It was Day2 that was bad - I had to go down to have an X-Ray and was reduced to tears by the pain. Thankfully the radiographer tried to be very gentle unlike her colleague who had Xrayed me pre-op. One of those dragons best avoided! The sort I would like to get hold of and give them a taste of their lack of care!

PMRpro profile image
PMRproAmbassador in reply to Pippah45

Er - I can see that, but it wasn't PRED, it was A LACK OF PRED. Your body waasn't able to produce the spike of cortisol it normally would in response to stress because of the long term effect of pred on adrenal function. You needed more for more than just during the op. Concerning they weren't aware of that aspect.

I'd probably have been chucked out with RNo1 - would have told her!

Suedeshayes profile image
Suedeshayes in reply to Pippah45

Hi. I too have just had a total hip replacement , but unfortunately there was dislocation, so the following day they operated again and ‘fixed’ it with titanium screws. I had had terrible pain the night of the op, more than hip pain usually causes, and the X-ray following day showed that it had moved 15 degrees. The bone had been softened by the steroids and it was called avascular necrosis. There should not be too much pain at the beginning of hip replacement, and I have none at all now, 3 weeks after. I didn’t alter the steroids and am slowly reducing 1/2 mg over this month. Hope this has been helpful.

Pippah45 profile image
Pippah45 in reply to Suedeshayes

Oooh that sounds painful Sue - I was worried about the quality of my bones too especially since I could hear all the hammering and sawing going on - and could feel the strength of the above! I think I might opt for a general anaesthetic if I need another new hip! I am glad you are recovering well now.

PMRpro profile image
PMRproAmbassador in reply to Pippah45

They can do the spinal anaestheric (much safer for you) with sedation so you don't know what they are doing. I had metalwork put in in Italy while fully conscious and chatting to the anaesthetists who wanted to practise their English - it was removed in Scotland the following year where I had to ASK for a spinal (she seemed surprised) and I was given temazepam so slept through the entire thing - much to my disgust!

Pippah45 profile image
Pippah45 in reply to PMRpro

I was very glad not to have a General Anaesthetic and was well sedated with the spinal but still aware of the physicality of what they were doing with the drill and hammer etc. I had been put on the alert a bit as the anaesthetist had difficulty with a very prominent vein on the back of my hand - I had felt like saying "right a bit" as the needle was going to one side! He didn't get into my spine too easily either - perhaps he should have gone to spec savers?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pippah45

Me as well with my knee - hammer & drill noises bit disconcerting. General with hip and shoulder though -no great issue with after effects of anaesthetic thankfully.

PMRpro profile image
PMRproAmbassador in reply to Pippah45

Someone made that mistake with my right hand on Friday - managed to miss twice. Luckily she backed down and got the more expert nurse! Prominent veins in hands are a warning - they will be difficult and run away!!!

I don't find the B&Q noises too bothering I was supposed to have headphones and music but never got round to it with 4 Italian anaesthetists queuing up to chat ;) It was the same when I had an epidural for a c-section - wanted to see what they were doing. They told me to look in the frames of the lights but I'm as blind as a bat without my specs! Post-op recovery for either was infinitely preferable to a GA though!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

My most uncomfortable recovery from GA was from hysterectomy - but it was in an army hospital back in the dark ages! No sickness, but excruciating indigestion (!?) type pain through shoulder blades for about 48hours…but as only 37 at the time - not too bad.,

Pippah45 profile image
Pippah45 in reply to DorsetLady

Oooh yes I had wind after second C section - and was given Peppermint by the nuns - that worked very well. I had wind slightly with hip too - but I had the peppermint handy!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I hadn't experienced the cramps of the uterus shrinking back down with N - had it in all its glory with F. Scotland was way ahead of Germany 40 years ago! Not adequate pain relief and just a sandbag to place over my stomach. Hell!

Pippah45 profile image
Pippah45 in reply to PMRpro

The reason the vein is prominent on that had was another anaesthetist messing up some years ago and destroying a vein that redirected the blood into another! I would have loved to see the C sections (and avoided the consequences of GA) but the first was a dire emergency by the time they got their act together and the second was supposed to be an examination under GA to see what was going on - they decided to bring my son into the world then despite it being 4 weeks before the expected time (and I knew my date to the weekend!)

PMRpro profile image
PMRproAmbassador in reply to Pippah45

Yes - I knew my dates to the day too! Neither of mine were dire emergencies - at the time, They might have been soon after. N was "fetched" at 31+ weeks because my BP was about to send me into space - and no post-op crisis, my BP dropped to normal and stayed there even after the epidural was removed. I've always said I was allergic to her ;) F was only 5 weeks early but she was even smaller than N who was 1300g, F was 1090g. N was a bit dodgy in the NICU but F was totally healthy, just small, which completely flummoxed the German neonatal unit. They'd never met that before!

Pippah45 profile image
Pippah45 in reply to PMRpro

S was about to be induced she was so late but sheep got in my garden that day and I started naturally! She was 9lbs and half an ounce! R in their wisdom they produced was 6lb12oz 4 weeks early but they had discovered my pelvis too small for anything over 5lbs! Why didn't they find the cause during the first C section? So they would have known I would have to have a subsequent one. The Army Gyny in Germany was furious when I said I would rather have the op than the trauma of 16 hours in the final stages of labour that ended in the emergency C section! So I came home to London!

PMRpro profile image
PMRproAmbassador in reply to Pippah45

Was that a Brit doctor or did BAR use the German health service? I was in the German system in Bavaria - vast numbers of English speakers there with Siemens, Phillips, the Uni etc plus the US army (but they had their own hospital).To be fair, the Germans found my uterus was bifurcate which Dundee had missed! They had taken a camera down so I would have a picture of the baby since the neonate unit was in the next hospital - and used it to take a picture of my uterus for the notes!!! I saw her at 4 days old - my Christmas present was OH being allowed to push me in a wheelchair through the basement tunnels between hospitals!

Pippah45 profile image
Pippah45 in reply to PMRpro

It was a British Army Medic - in BMH Hannover if I remember correctly. Mums Gyny said he would take me on as long as I flew home (and I was too advanced to fly really!) I had to work out my wrong dates to satisfy the airline but they didn't ask - I hid the bump under the toddler! But it was when Ireland had just kicked off again and some poor customs man had to search the nappy for weapons!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pippah45

Lucky him! 😳

Suedeshayes profile image
Suedeshayes in reply to Pippah45

I had spinal too with epidural, but was sufficiently sedated so didn’t hear the carpentry noises. I did enjoy Deacon Blue on arrival into theatre. Fab band. Sue. Xx

Pippah45 profile image
Pippah45

It was really only that one afternoon that was bad bad but maybe it would have been better with extra pred who knows?

As for telling people I have been known to - but I do find it can be less stressful to keep quiet! She was taking the next in the queue for the 2nd X-Ray so if it had been me - she might have treated me worse if I had kicked off the first time?

PMRpro profile image
PMRproAmbassador in reply to Pippah45

I have a problem with one of the doctors at the hospital here, compounded by my husband's illness which was what led to the contact in the first place. I asked the GP what I should do if it happened again that she was caring for me (I use the word very loosely) and she said I should just ask for a different doctor as the relationship had been damaged. Trouble was, last time it was Sunday so no choice. She didn't come near me (always a positive) until she asked if I wanted to stay for another night or go home and that she had adjusted my medication. What she meant was, she had stopped the one medication that has kept my heart fairly happy for the last 6 years as she said it wasn't doing anything! I pointed out I WAS under a lot of stress and exhausted and that probably had contributed to the pulse of 190 and the drug had done very well for the last 6 years! So she told me to avoid stress - she KNEW my husband was dying. I looked at her and she added "But you can continue taking it if you want ..." - realising I probably would. I have and made sure I got an early appointment with a cardiologist - who did the training, not the "I've worked in medicine for over 20 years and I also have experience" madam claimed.

She won't come near me again after that if I can help it!!!!

SheffieldJane profile image
SheffieldJane in reply to PMRpro

I hate that people abuse their positions like that. If you can’t be kind and competent, be neutral and get out of the way.

Pippah45 profile image
Pippah45 in reply to PMRpro

What a Witch! There is one like that in my practice - I wanted to get the gene test that tells you if you are likely to develop breast cancer. She was duty doctor so over the telephone she asked why I wanted it - very abrasive voice - and asked family history - I said my Mum died of Breast Cancer very young. What age she demanded - I said 56. Her immediate response was a very nasty "That's not young - no you can't have the test". I found out later that the aggressive breast cancer that is in those genes manifests in people much younger than 56 but she didn't say that! She has also told me that I am Hyperthyroid - because she can't read a blood test - I am Hypo! I have a request in to never consult with her! But Murphy's law may be she is the only option one day!

PMRpro profile image
PMRproAmbassador in reply to Pippah45

This one hasn't an ounce of empathy or sense of humour! She also refused to meet me to tell me about OH when he was in hospital and not allowed any visitors despite fulfilling 3 of the separate criteria to be allowed a visitor during Covid. He was sent home in a worse state than he went in and they tried to send him home without any aids in place to make it possible. So I went over their heads and got the palliative care lot involved - as the other doctor had said she would do but hadn't. But thinking it is OK to send a patient home when they can't stand alone, never mind ambulate, even during Covid, is just appalling

Longtimer profile image
Longtimer in reply to PMRpro

It makes you wonder what their colleagues think of doctors like her....embarassed I bet at least!

PMRpro profile image
PMRproAmbassador in reply to Longtimer

I do know a few of the older ones are aware of her attitude - I suspect it also includes clocking off at 5 (or whenever) rather than seeing their patients until they were finished which was mentioned by one of my doctors. Trouble is, one of the senior regs is equally awful and the lack of a senior consultant since the last one died very suddenly soon after appointment has compounded the felony. The previous Primar kept a VERY tight ship and you can see how Medicine has deteriorated since he retired and Covid put the mockers on a new appointment. A lot of people go to the hospital down the valley for non-urgent stuff but in an emergency you don't have that choice.

Longtimer profile image
Longtimer in reply to PMRpro

Oh dear, it doesn't take much for things to deteriorate....like a school that changes it head....

How are you feeling now, is the flare easing?....we are a long way off our 4 mg party!

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Saw that with the girls' school - excellent head who knew the local lowlife well and had the measure of them when Nat went there but he retired. And some twerp who'd been at the Education office for years thought he fancied some more direct contact with kids. Trouble was, he thought you could discuss things with them and appeal to their better natures!!! Until the represenative of one local gang family decided the guy from the other gang was half-inching his girl - or rather, former girl as they had split up some time before. So one turned up at school, while suspended as it happened, with a hammer to have a go at the other! The neurologist told the head that had the hammer been a cm further over it would have been curtains - as it was, it was just a bad headache. All the kids had just gone into class after lunch - and had a grandstand view from the windows.

Longtimer profile image
Longtimer in reply to PMRpro

Horrible, shocking what goes on in some schools...

He probably said...You naughty boys, don't do that again!

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Knowing him he'd have regarded the n-word as too strong ...

Longtimer profile image
Longtimer in reply to PMRpro

When we look back how strict our schools were, goodness me, they wouldn't cope today...even being told to walk in a line down the corridors!....We thought it harsh at the time but was it....

Pippah45 profile image
Pippah45 in reply to Longtimer

I guess we are of a similar generation - I think those rules were the bedrock of society as long as they were applied fairly and those in power did not abuse their power. Where has it got us without those rules today?

PMRpro profile image
PMRproAmbassador in reply to Pippah45

In a bit of a mess ...

Longtimer profile image
Longtimer in reply to Pippah45

Quite right, teachers aren't allowed power today...they would be reported for saying it doing the wrong thi ng....Brave who dares to be a teacher nowadays...especially teaching teenagers!...

Pippah45 profile image
Pippah45

Worse and worse PMRpro - some appalling things happen especially in Covid. What a dreadful time you had. Thank goodness you were able to fight your husband's corner.

Suedeshayes profile image
Suedeshayes

Hi again, Pippa 45, where did you get the super path hip replacement, it sounds amazing? Sue.

Pippah45 profile image
Pippah45 in reply to Suedeshayes

It was the Spire in Leicester Mr Kulkarni. I am so glad I heard about the op before I went for the "normal" hip replacement. Particularly because living on my own with 2 dogs I was able to cope after 5 days. My daughter was there for that but couldn't stay. The full name of the op I had is "Super Path Minimally Invasive Hip Replacement" . One of the downsides if you can call it that - is that it has only been tested for 10 years so no one knows how long it will last! But I believe none have failed yet. :)

Suedeshayes profile image
Suedeshayes in reply to Pippah45

Thank you, I’ll be investigating if the other hip needs done. Xx

Suedeshayes profile image
Suedeshayes in reply to Pippah45

And you didn’t need crutches after those 5 days?? Xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Suedeshayes

I didn’t need crutches after my hip…walking stick(s) only - and out of hospital within 24hrs.

Pity really as it was done in private hospital but paid by NHS- would have liked a bit more pampering! But never mind…

Pippah45 profile image
Pippah45 in reply to DorsetLady

That was very quick - well done you!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pippah45

Same after shoulder as well - don’t think they like to keep you in longer than is absolutely necessary…plus I heal very well, and GCA in remission, so no issues - luckily.

Suedeshayes profile image
Suedeshayes in reply to DorsetLady

Haha, yes, you missed out. But I’m intrigued. How did you manage without crutches? I’ve been told that partial weight bearing, helps the healing as, full weight on hip and surrounding area, impedes the reparation of tissue and cell renewal.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Suedeshayes

Used 2 sticks for a couple of weeks -then down to one. No problems with it - then or now -2 & half years on.

But you must remember I am a Viking Goddess and Wonder Woman in disguise! 🤣😂🤣

Suedeshayes profile image
Suedeshayes in reply to DorsetLady

😂😂xx

Suedeshayes profile image
Suedeshayes in reply to DorsetLady

Bearing in mind your supernatural qualities, did you have the traditional hip replacement or the one that Pippa had, the super path one? x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Suedeshayes

No, traditional…..😊..we are talking about deepest darkest Dorset!

Pippah45 profile image
Pippah45 in reply to Suedeshayes

I was encouraged to weight bear as much as possible. But that was Super Path surgery.

Pippah45 profile image
Pippah45 in reply to Suedeshayes

ooh no - didn't need any help in the house after 5 day - crutches till week 3. I have arthritis in my thumbs so I think sticks might not have been as safe.

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