Blood pressure

[Nonameme]

Much has gone on over the last few days and I am now an in- patient in hospital. My GCA was worsening so GP said to go back up to 40mg. I did this and everything went downhill. I had terrible pain in my back and eventually lost all bladder and bowel control. Taken by ambulance with blood pressure of 220/? I do not suffer high blood pressure and earlier in the day GP reported a reading of 130/65.

In AE blood sugar was found to be over 20. They had never heard of GCE.

I kept telling them I was on steroids but they were not interested at all they wanted to take away all my medication but I refused to give them up It was gone midnight and I knew I had to take them in the morning

Got a bed on AAU just midnight in a gap between 2 bays no curtains or screens all intimate examinations over the next day done in full view of patients and visitors

I will make a formal complaint.

Next morning I had an MRI which showed CORDUS Equinus. Now waiting air lift to Southampton when they have a bed.

My question is throughout this time No one has been able to take and get a reading for my blood pressure different machines , cuffs and parts of the body.

It has also been confirmed that I have PMR which my GP said no back in February.

All are baffled but not concerned about inability to take blood pressure and get a reading so thought I would consult the knowledgable folk on here.

[suzy1959]

That must have been so frightening. They worried that I had Corda Equinus in September because an MRI showed 2 bulging discs pressing on my nerves. Luckily I didn’t have any symptoms and a consult ( private as Kings won’t see me until March)reassured me that I didn’t have it. So I have done some research plus they told me it would be a medical emergency so I can only imagine how worrying this is for you. I really hope they operate asap as they can sort it out that way.

Good luck 🤞

[Nonameme in reply to suzy1959]

Than k you

[Nextoneplease]

Hello Nonameme 😊

Gosh what a traumatic experience for you! I’m glad you’re in hospital now and hope that a bed will come up soon in Southampton 🤞

I’m afraid I had to look up Cordus Equinus so I have no experience or knowledge to offer. I just wanted to send my very best wishes for speedy treatment and a successful outcome. Take care 💐xx

[Nonameme in reply to Nextoneplease]

Thank you

[Angelsmummy]

Shocking,shocking experience for you,thank god you are now safely in hospital and in a bed!Really hope things come good for you,wishing you a speedy recovery,and look after yourself .Keep holding onto that Pred,as if you would want to part with them,thank god you didn’t,you probably would have been in more trouble now!!!My thoughts and sincere good wishes to you,xxx💐💐💐💐🌼😜

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this..do hope you get the necessary help at Southampton including a BP reading.

All the very best… 🌸

[Nonameme in reply to DorsetLady]

Thank you Saturday now so nothing will happen for a couple of days I suspect

[PMRpro Ambassador in reply to Nonameme]

They will be waiting for a high dependency or ICU bed I imagine for post op - you never know.

[DorsetLady PMRGCAuk volunteer in reply to Nonameme]

Agree, Southampton covers a wide area… my neighbour [west Dorset] was there recently - and my great niece [mid Hants] has been there on a couple of occasions. Hope it’s early next week…😊

[PMRpro Ambassador]

If anyone wants to look it up, it is called CAUDA equina but google seems to be quite clever at spelling!!!

Sorry to hear that - scary when it is that bad. Strange the ED hadn't heard of GCA - they often get it right when GPs don't.

I assume they have been using the special sphygomanometers for very high BP? And an old-fashioned mercury type with a stethoscope? The digital sort aren't quite as versatile ...

[Nonameme in reply to PMRpro]

They are just using the bog standard machines on the ward, different cuff sizes etc and various parts of body then just shrug it off and move on! I too was shocked when each time I mentioned GCA I got a puzzled look with what’s that, I then spoke the full name and got shrugs and a blank look and occasionally what department is that under! So I was totally surprised when the diabetic nurse walked in to the room and said “so you have PMR and GCA which have done a number on your type 2 diabetes “ I have been put on insulin pen and thankfully it has come down overnight. Interestingly they said not advised to take Metformin with steroids. It is not permanent and will reduce along with steroids reduction. I am just now beginning to to fell a bit more normal. And of course am mad at listening to GP who put me back on the dreadful Lanzanapole and its awful side effects. Consultant is writing him a letter. This has been replaced but not sure what with.

B12 is also deficiency is now noted and loading dose started so hopefully its improving from now on and I can feel normal again. Still at 40mg Pred so a very long way to go but at least I am a whole body and not different disconnected bits of a body. 😳.

Again thank you all for the wonderful support you have given me I know I wouldn’t havre half as much confident tackling the doctors

[PMRpro Ambassador in reply to Nonameme]

I do wonder how many patients who develop steroid-induced diabetes get put on metformin by panic stricken GPs, because I know quite a few are. DO ask why not if you get a chance - all grist to the mill of knowledge!

[Pixix]

I’ve heard of it, as I was actually warned about it once, & told to get to hospital fast if I had your symptoms. I was lucky. Hope your treatment will be better from now on. Sending hugs, S x

[powerwalk]

Oh very traumatic for you. I hope you get sorted out urgently. Do let us know how you get on. Beyond scary they didnt know what GCA is!

[Nightingales]

I am so sorry you are having this distressing time. Talk about piling one thing on top of another. It’s appalling that they haven’t heard of GCA and also haven’t been able to get a BP. I have never heard of such a thing. There must be an old fashioned Sphygmomanometer and experienced nurse about. I expect not taking metformin with prednisolone is news to many of us. I have been on both for years. Anyway, it must be all too much for you and I wish you a very speedy recovery.

[Bcol]

Can't add anything sensible to all the comments made so far, and at least you sound a bit happier with how things are going. So just to wish you well, hope the Southampton bed makes an appearance soon and hugs and best wishes. 🫂.

[Nonameme in reply to Bcol]

Thank you for all your kind comments. Still awaiting a move to Southampton NHS grinds to a halt at weekends nobody about all day just left with no further info and because of my haste leaving home I took a prescription a few months old so they do not have up to date meds and although I am on Tramadol and pred now they are being really nasty about letting me have it all they give is paracetamol! Finally got Tramadol this pm oh the relief maybe I will sleep tonight.

[Fatsiajaponica in reply to Nonameme]

So sorry you are having to deal with all this. I have only just seen your post but wanted to wish you well and well done for hanging on to that pred. Hope you get some sleep.🫂

[Nonameme in reply to Fatsiajaponica]

Thank you.

[PMRpro Ambassador in reply to Nonameme]

I wouldn't say it grinds to a halt - nor would my daughter in the ED! But emergencies do get priority ...

[proactive in reply to Nonameme]

It might help to ask to speak to the hospital pharmacist who may know about steroid dependency...Perhaps the pharmacist could explain to the nurses, Doctors or whoever is arguing with you about taking the prednisone.

[Nonameme in reply to proactive]

An extremely knowledgeable pharmacist did come to see me and had a good chat. He said it was an ongoing problem with so many frequent staff changes but he said being aware and insisting on keeping the pre was absolutely the right thing to do because it raised a red flag when they contacted him in that I was refusing to part with a drug and it caused concern albeit the wrong concern but it worked. I am now being given the correct dose at 5 am way before food but you can’t have everything. Today being end of daylight savings means I waited3 hours for food after being given it

[PMRpro Ambassador in reply to Nonameme]

My grandson is just doing his pre-registration placement in a big hospital - he loves it, not least the opportunity to pick up problems like this where the ward staff do it wrong!!! I'm lucky in a way - the hospital pharmacy here doesn't stock a few of my medications as they aren't routinely used so I get to keep mine and dispense them myself!! It also means I can recognise what is what and take them at the correct times. In the UK they are very dilatory about timing of meds. It is a major problem for diabetics too.

[Shandylowe in reply to Nonameme]

Well done you for sticking to your guns. You really have to be your on advocate with this illness. Hope you feel better soon.

[Nonameme in reply to Shandylowe]

Thank you I have today received yet another overhaul of my medication but they are quite concerned about my diabetes. Ihave been a well controlled type 2 for many years however things have gone very wrong. My morning finger prick shows around 10. My 6pm is around 24. I have been given insulin 16 at 6pm. As I am only 4 days in with this I am yet to understand but a special diabetic nurse is coming in the morning. No HB1 AC HAS BEEN DONE?

With regards my spine Southampton have said it looks stable and can be managed with pain killers and they are arranging for me to be seen by specialist physiotherapists. Not sure if I will have to travel from the island or if they hold clinics here.

I also went to the eye clinic for my appointment for the GCA but all their equipment was down so have to wait for another appointment. I had gone down to 30 but up again to 40 when all this started because symptoms were returning. On that note do you think this could have any bearing on my diabetes?

[PMRpro Ambassador in reply to Nonameme]

The one-off measurements done with fingerpricks will be all over the place BECAUSE of the high dose pred. Pred triggers the liver to release random spikes of BS from the body stores in liver and muscle. It probably won't yet have had an effect on the Hba1c as it reflects the average reading over the previous 3 months. It also isn't related to food, it just adds to any peaks caused by food.

What time do you take the pred? Several people have used a CGM and established that their peaks are between about 3 and 6 hours after taking the pred. Some avoid eating in this window and it seems to keep the levels more acceptable.

Koalajane was already Type 2 when she started pred - I hope she will reply with some advice.