Just when I thought I had had everything....

[lfu2]

73 year old male with GPA

2 weeks ago, at the weekend, I had some pains in my legs and feet. These were different pains than I had experienced before. I went to the doctor on the Monday. I have a wedge fracture in my lumbar region and he thought it may be that raising its ugly head, I have not had any pain before from the fracture.

It progressively got worse over the week... by Friday I could barely walk (with a stick). The weekend was terrible but I soldiered on and called the doctor for a home visit on Monday. The GP gave me a thorough examination and told me I probably didn't need to go to hospital as a prolonged rest would see me right. She went back to the surgery for a discussion with her colleagues. She phoned me back at 2.30pm to say that I needed an MRI scan and an x-ray, and she had arranged an ambulance for me.

The ambulance turned up at 6.00pm and took me to Leeds General Infirmary A & E. I was pushed into a waiting area in a wheelchair and was eventually seen by a doctor at 10.30pm. Another thorough examination and an x-ray at 12.15am.

I was eventually transferred to a ward at 4.30am with a 'nil by mouth' sign on the bed. A doctor saw me at 7.30am and I had an MRI scan at 10.30am. The consultant saw me at 2.30pm. He told me I had a cyst on the lumbar region of my spine and that was causing all the pain. Although an operation could drain the cyst, it was decided that it was not necessary as It would probably right itself within a fortnight. No medication was prescribed and I was discharged at 6.00pm with an appointment in 2 weeks time. Home for 6.45pm and the first cup of tea since the day before.

I was offered no refreshments during the whole time at LGI nor was I allowed any of my medication as they thought I might have be having an operation. The nursing staff, as always, were brilliant. The best part was waking up in my own bed.

[PMRpro Ambassador]

What an experience! And yes - back home to your own bed is by far the best bit!

[Blearyeyed]

Oh gosh , how awful!

I hope you got your medication and a nice cuppa as soon as you got in.

Hopefully it will right itself as they say , but keep an eye out for extra PMR symptoms , as this could happen and you may need to increase you dose so that you don't have to deal with a Full On Flare as well.

I hope you have someone at home to act as your Butler!

Take care , lots of fluids and light meals , and if you feel like it isn't improving don't wait to hear back to A and E.

Best wishes for your recovery xxx

[Linny3]

How terrible for you. That is one of my biggest worries; I'll need to go to emergency and then can't have my pred. YIKES!

Hope it all turns out ok for you.

[Hidden in reply to Linny3]

Always carry your Meds with you incase of an Emergency as they may not have your Meds readily available.

Best Wishes

MrsN

[Hidden]

What an awful experience for you, the fact you were in pain & needed Pain Meds, they never cease to amaze me that they don’t understand you need your Prednisolone at it’s required time wether you are going to Theatre or not!

I do hope you improve & fair play to the GP getting you sent in for the MRI & X-ray.

I hope you are starting to feel better & the cyst resolved itself soon.

Kind Regards

Get Well Soon 🍀

MrsN

[Jackoh]

Glad you’re at home now and GP was vigilant. Like Mrs Nails can’t understand why they didn’t let you have your pred even if you might have needed an op? I have always taken my own pred into hospital on the few occasions I’ve been admitted as they don’t seem geared up to it on the ward. Glad the outcome for you was good. Take care and hope you feel better soon.

[lfu2]

Update: I took my own medication to hospital but they took it off me and locked it in my medicine cupboard. All questions by me for medication were dealt with 'the doctor needs to approve that.' They relented once and let me have a shot of OraMorph which acted very quickly but I needed more than that.

I usually sleep well in hospital but this time was different. The bed was hard and uncomfortable and I was in a lot of pain. I got one and a half hours sleep the first night with having late examinations (after midnight) and constant interuptions. The change to a ward was a total cock-up. They took me to a different hospital at 4.30am only to discover that someone had written the instruction wrongly, and they had to take me back again to the original hospital, but to a different ward.

When I did get home, my first request to my OH was a cup of tea and steroids followed by breakfast cereal, (at 7.00 o'clock at night). The tea was very welcome. The following day I was relieved that my pain had diminished somewhat and I could move around with my stick reasonably well. The days following have been different, without rhyme or reason.... bad pain one day, light pain next day and so on.My light pain is constant and about 6 out of 10. When the bad pain starts it is off the record. I have to stop moving! I have upped my steroids from 11mg to 30mg for a week to be on the safe side in case of a flare, but fingers crossed, everything GPA-wise seems steady.

Thank you all for the replies and the interest. lfu2

[PMRpro Ambassador in reply to lfu2]

Complaint time - that is utterly ridiculous.

Not the UK, but I am asked if I want their medication or mine, it is on the hospital computer what I take all the time. Last time I missed my night dose of pred - not my fault, I go nowhere without the rest of the day's medication but I was taken in by ambo and OH isn't au fait with my stuff. They don't have the form of pred I take in stock so I need my own and I get to keep it in my locker. It wasn't too bad as it happened, just a bit stiff!

[Constance13 in reply to PMRpro]

They won't let me use my own medicine in hospital here. The nurses say "the doctors won't have control over my use". No good telling them I would NEVER overdose. I just chuck all their stuff away and use mine anyway. What a waste of money!!