increasing my prednisone : Diagnosed in 2014 and... - PMRGCAuk

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increasing my prednisone

zealand profile image
22 Replies

Diagnosed in 2014 and put on 30mg. Tapered it slowly and got rid of prednisone in March 2020. My hand ,knee and ankle swelled up so the GP put me back on 20mg. Tapered again, a little up and down but managed to get down to 2mg. Unfortunately I seem to have had another flare up and I wake up aching all over. My skeleton aches but especially my right hip. My sleep is disrupted as I wake up if I turn over to my right side in the night.

Should I increase my prednisone again and if so how much should I take?. I am on holiday at the moment from Wales. I am in New Zealand for 4 months

Help please I hurt so much.

Jan

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zealand profile image
zealand
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22 Replies
piglette profile image
piglette

I would increase by 5mg for a week or so to get the PMR under control and you can then reduce again perhaps to a bit above what you are now to start with. Have you tried taking painkillers for the pain? It may be worth having your hip checked out.

zealand profile image
zealand in reply topiglette

Taking zapain (codeine paracetamol) 2 every hr for pain but waking up aching. Doing a house sit for friends so did wonder if it was the bed!

SnazzyD profile image
SnazzyD in reply tozealand

It could well be the bed. You say your skeleton hurts. This is exactly what I get when I sleep on a bed that isn’t right; I’m quite pathetic in that regard these days! Do the pain killers help? Are you doing anything different in the day?

I also echo what Bcol says - it sounds like you are taking way too much pain killer, paracetamol particularly, if you really are taking it every 2 hours. It is not to be trifled with! I’ve seen and heard of people with liver failure even after taking the maximum but allowable level of it.

sidra1968 profile image
sidra1968 in reply toSnazzyD

Different beds really get me , too.

piglette profile image
piglette in reply tozealand

It does sound like the PMR or the bed! I went to stay with friends in France before PMR and was walking around bent double with dreadful back pain because of the bed!

sidra1968 profile image
sidra1968 in reply tozealand

Just my experience, but I truly cannot sleep on a different bed without my right hip really hurting and getting messed up/flaring. Sometimes areas of my back join in, too. I would increase by 5 mg for a week to 10 days or so..

Gimme profile image
Gimme in reply tozealand

I am very concerned about the amount of paracetamol that you are taking. You should not exceed 4g a day maximum, taken 4 times a day, no more than 4 hourly. Paracetamol can be very dangerous for the liver when taken in overdose. If the pred is not controlling the pain and the pain is unbearable, you really need to see a doctor.

PMRpro profile image
PMRproAmbassador in reply toGimme

It's OK - that impression has been corrected! See below. No worries required ...

Countrykitten profile image
Countrykitten in reply tozealand

I hope that's a typo and you don't really mean 2 every hour!!! 2 up to four times a day, max 8 a day.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toCountrykitten

Been clarified —

healthunlocked.com/pmrgcauk...

Bcol profile image
Bcol

Morning, sorry to read of your problems, it's always harder when you are away. Piglette has covered the Pred thought, but taking two Co-Codamol (Zapain) every hour is way above the recommended dosage. There should be a minimum of four hours between doses and no more than eight tablets (four doses of two tablets)in twenty four hours.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

This link contains usual advice for dealing with a flare -

healthunlocked.com/pmrgcauk...

But if your right hip hurts mostly, could it be something you have done whilst away or osteoarthritis- and agree with others - you are taking way too much paracetamol.

PMRpro profile image
PMRproAmbassador

I'm far from sure that this is PMR causing the problem. It could be more localised if the hip is worst and hurts to lie on and that that suggest trochanteric bursitis. When it is bad for me, I find I feel as if I ache all over too when I lie wrong in bed. Lots of pillows to support your upper leg if you are a side sleeper may help. Is there the option to try another bed?

But please, stop taking Zapain at that rate IMMEDIATELY or the bone pain will be the least of your problems. More than 8 tablets in 24 hours is dangerous. There is a very small difference between maximum safe dose of paracetamol and a dose that is toxic for the liver so taking more than 4000mg paracetamol in 24 hours is dangerous - especially if you have a drink of alcohol too.

zealand profile image
zealand

sorry not sure why I said 2 zapain every hour. I take 2 every 4 hours, maximum of 8 in a day. In fact I only usually take about 4. I always carry 8 with me to prevent me taking too many. Panic over!

I have seen the Dr here and he has referred me for a scan but don’t know how long will take to come through. We finish the house sit next week so I will have a different bed to get used to. Not sure where we will be as our next house, dog sit has fallen through as the dog is ill. I guess we will have to go b and b around the country.

Many thanks for all your advice. I will up my prednisone to 5 from tomorrow and see how it goes

PMRpro profile image
PMRproAmbassador in reply tozealand

Phew - thank goodness for that!! What sort of scan? Are you in the same sort of area the whole time?

Hope the next bed helps!!

Pixix profile image
Pixix in reply toPMRpro

Quick relevant question…would a scan show up trochanteric bursitis, please? My last steroid injection only had effect for 3 weeks. Now I have both sides bad (though other side could be sciatica, as diagnosed there before). Tramadol & buprenorphine aren’t dealing with the pain. Dr says he doesn’t think it’s spinal haemangioma (which I’ve had for years), but now wondering if it’s something different!?! The bursitus started middle of pandemic years. Thanks, S x

PMRpro profile image
PMRproAmbassador in reply toPixix

It is usually diagnosed by clinical history and physical examination - x-rays and scans are more to rule OUT other causes of pain rather than rulling GTPS in. My rheumys both press firmly to elicit the loudest squeal and confirm it is the bursa like that from the position!

upmc.com/services/sports-me...

is a good summary, read all 3 pages.

Once you have it, it is very persistent.

Iamfedup profile image
Iamfedup in reply toPMRpro

Hi PMRPro my physio pressed on my sacroiliac joint and it was sore but then pressed about five inches further down in a straight line and I squealed! What could that be please. Trying to figure out pain at the very top of my leg. Can only lift this leg a couple of inches when sitting down.

PMRpro profile image
PMRproAmbassador in reply toIamfedup

Possibly referred pain from the SI joint. Depends how good the physio is at identifying the spot! SI pain does affect the buttock too and even down into the thigh. So if the physio ruled out SI joint problems - they could well be wrong. And there is always sciatic pain and piriformis syndrome where you can have localised pain over the piriformis muscle.

mayfieldclinic.com/pe-sijoi...

sportsmedicine.mayoclinic.o....

healthcentral.com/condition...

Iamfedup profile image
Iamfedup in reply toPMRpro

Thank you PMR pro I will speak again with my doctor

Pixix profile image
Pixix in reply toPMRpro

Ah, many thanks. Very persistent…yes, 4 years now, I think. Injections have helped from 3 weeks to 3 months, tbh. Yes, my Dr presses various points until he finds the one I really object to, so I think he’s right. Will read the summary, thank you. But if a busy day here, puppy sitting, outing, playing, feeding etc! S x PS read it…it all fits the left hand side, but think the right is sciatica, which was diagnosed 3 years ago!!

Gimme profile image
Gimme in reply tozealand

I'm relieved that you have seen a doctor. I hope you feel better soon.

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