Rheumatology appt : Thought I would update you... - PMRGCAuk

PMRGCAuk

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Rheumatology appt

Fiddlersmum
Fiddlersmum

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

37 Replies

Hi, do you mean osteoarthritis rather than osteoporosis as you say your dexascan levels are good?

Yes - my apologies and well spotted - been up since 5.30 - it’s been a long and emotional day!

Hi Sue

Yes of course stay with us ~ as Jane says is it Osteoporosis of your spine with you having a Good Dexa Scan?

Has Consultant given you any Pain Meds to help in the meantime?

MrsN

Fiddlersmum
Fiddlersmum in reply to MrsNails

He’s suggested Co-codamol for now but also said we will work on pain control as and when needed

MrsNails
MrsNails in reply to Fiddlersmum

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.

DadCue
DadCue in reply to MrsNails

That's a very good way of doing it. Paracetamol (acetaminophen) enhances the effects of a relatively mild narcotic which is codeine. Keeping the medications separated rather than in combination allows more flexibility to match the level of pain with an appropriate medication. Sometimes paracetamol is enough for mild pain. Codeine works well for moderate pain and the combination of the two works well for more severe pain.

It is tough to match the pain level with an appropriate medication. Not every pain is caused by autoimmune inflammation so more pred isn't always appropriate. There's usually inflammation involved in mechanical pains caused by osteoarthritis so prednisone will likely work.

Taking prednisone forever isn't the best approach if something else works. Prednisone did spare me narcotic addiction so that was good. Other pain medications for neuropathic pain turned me into a zombie. I have plenty of arthritic pain to contend with so acetaminophen and codeine might be an option.

I'm off prednisone now and hope to stay off. I think maybe I will ask my rheumatologist for a prescription for codeine to go with some acetaminophen. I'm not suppose to take ibuprofen and acetaminophen alone never seems to do the job.

I have taken codeine at times and the constipation isn't good. Occasional use of codeine isn't so bad.

Fiddlersmum
Fiddlersmum in reply to MrsNails

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

DadCue
DadCue in reply to Fiddlersmum

You are more concise than I am.

Fiddlersmum
Fiddlersmum in reply to DadCue

🤣

Bcol
Bcol in reply to Fiddlersmum

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!!

Fiddlersmum
Fiddlersmum in reply to Bcol

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 ;-)

Bcol
Bcol in reply to Fiddlersmum

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.

Fiddlersmum
Fiddlersmum in reply to Bcol

Lucky that I love prunes - I try to limit myself to 6 a day but there are times when I know I've had too many !!!

Bcol
Bcol in reply to Fiddlersmum

Probably silly question do you just put them in water, bring to the boil and simmer them or do you add any extras?

Fiddlersmum
Fiddlersmum in reply to Bcol

I just buy them pre-packed from the supermarket and eat them straight from the packet!

Meggsy
Meggsy in reply to Fiddlersmum

Me too, love them!

PMRpro
PMRproAmbassador in reply to Bcol

You can get non-soak ones which you can eat just like dates or raisins

sunmaid.com/products/califo...

There may well be other makes available - supermarkets seem to have their own label versions ...

Bcol
Bcol in reply to PMRpro

Shows how long it is since I bought Prunes. I will indulge myself. Thank you both.

Bcol
Bcol in reply to Fiddlersmum

Morning, quick update, I had prunes with my porridge for breakfast yesterday and will be doing so again today. They were lovely.

Fiddlersmum
Fiddlersmum in reply to Bcol

Excellent xxx

DadCue
DadCue in reply to Fiddlersmum

I take a muscle relaxer called Zanaflex (tizanidine) which works by blocking nerve impulses (pain sensations) that are sent to your brain. I actually started taking it after surgery for trigeminal neuralgia which left the entire left side of my face and head numb and tingling.

Tizanidine is fast acting but only for a short duration so it works well for me. It does make me drowsy so I usually take it at bedtime. It helps me fall asleep and stay asleep because it relieves back pain during the night too.

It is funny because my rheumatologist, neurologist and neurosurgeon are more than happy to prescribe it for me. For some reason, my GP isn't allowed to prescribe it.

Fiddlersmum
Fiddlersmum in reply to DadCue

That seems fairly ridiculous doesn't it . . .

DadCue
DadCue in reply to Fiddlersmum

Some kind of hospital policy but nobody seems to know why.

Fiddlersmum
Fiddlersmum in reply to MrsNails

I edited the post to say Osteoarthritis - duh! can you tell I've been a little challenged today ;-)

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.

PMRpro
PMRproAmbassador

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.

Fiddlersmum
Fiddlersmum in reply to PMRpro

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?

PMRpro
PMRproAmbassador in reply to Fiddlersmum

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.

Fiddlersmum
Fiddlersmum in reply to PMRpro

Thank you - I guess it's just a play it by ear thing . . . .

PMRpro
PMRproAmbassador in reply to Fiddlersmum

It is at any stage really - some people can reduce in sizable steps, others can't.

Good luck Sue! It does feel as if you are getting somewhere at last. Let us know how you get on.

Will do - I do plan to hang around here though x

A few mentions of constipation with codeine, Lactulose 10-15ml twice daily is good to keep things moving. Oh and plenty of water.

RoadTrip
RoadTrip in reply to 123mossie

I use Laxido daily for bad constipation. Doctors think caused as side effect of Adcal.

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

Take care

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. 🙂

I’m taking Jarrow Ultra Bone Up - I buy it from Amazon - it’s highly recommend!

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