Thought I would update you lovely people . . . I had an urgent referral to rheumatology today after being put on 40 mgs of Pred ... going through my notes, experiences etc the doctor has come to the conclusion that I have Osteoarthritis of the spine rather than PMR - I think he's probably right given that even 40 mg of Prednisolone isn't having any effect other than making me feel really ill. The pain is contained in my back, not radiating down my arms or thighs, and is solely in the back of my body, not the front and I do have metal work in my back following a riding accident some 30 years ago and also have two knee replacements down to osteoarthritis.
He will continue to see me over the coming months, once I can get off the steroids which he wants to happen as quickly as possible - from 40 to 20 then 2 mg per month until I get to 5 mg at which point we will have to see if I still have any functioning adrenal glands! He's going to work out a way forward to keep my pain under control, and hopefully the osteoporosis too.
He's also said that my dexa scan levels are good and there is absolutely no need to take Alendronic Acid, he's happy with the supplement I've been taking and to continue to do so. I hope it's ok to stay here for the time being - until I get through some of the tapering thing!
Sue AKA Fiddlers mum
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Fiddlersmum
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Co-codamol is good, if it suits you, watch your bowels. I have mine as Paracetamol & Codeine separately so l can add in the dose of Codeine appropriate to the pain, l saw a Pain Management Specialist many years ago & he recommended this method so have always stuck to it.
Thats exactly how I have it . . . that way I get to control the amount of codeine I take, if the pain is only moderate I try paracetmol first, adding codeine as necessary - I've found it so much easier that way! I can't take anti-inflamatory medication so that may complicate things at some point down the road but I will be happy to be off Pred
I use Co-Codamol (30/500) for my OA, they are the only thing that seems to work for me, particularly as NSAIDS are now out for me, but don't be surprised if you get some constipation. Not sure that English is very good!!
I've found that Prunes help, and drinking gallons of water but I also take Magnesium to help with sleep and muscle relaxation so that may well account for my getting away without too many laxatives
I've not had a prune for years, I need to get some again as I'm sure I like them and they are good for all sorts of things. I'm sure there is a post about prunes doing the rounds at the moment. I don't take laxative's as luckily I have never suffered very badly but I do drink plenty of tea.
Good you’ve got some clarity. Sounds like your body has been a busy bee in life with knocks. Anyway, time not wasted here as you’ll be a fully fledged adrenal watcher and if anyone says to you they are on high dose Pred, you won’t give them a blank look because you know what it’s like. Good luck.
We don't throw anyone out! How long have you been on pred? Most experts would say you can keep reducing in bigger steps down to 10mg which is where you need to slow down for adrenal function to return. But at least this is someone that recognises that if pred doesn't achieve anything - it probably is something else.
Just had a look - only a year on pred so since you can drop straight to 20mg tomorrow you could try 5mg down to 15 too I would think.
Oooh it would be good if I could do that but the Consultant said 40 - 20 then 2 mgs per month - although I may well give it a try, depends how it goes I suppose - although how would I measure how well things are going?
How you feel really - if it isn't PMR you won't have a flare of that. As I say, down to 10mg isn't an adrenal problem. That's when it starts to get a bit more critical. But after barely a year on pred you should be fine.
Good to hear you got to see a rheumatologist!ans getting your health sorted out I not see a rheumatologist in over 14 months or so my go has made several requests for urgency but nothing
Seems you have a good GP there that you can work with. What's the supplement you're taking for ur bones? Good luck with ur tapering. Most people find taking it very slowly works best, but everyone is different. 🙂
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