I'm back to 20mg... I have to stop this yoyo diet of steroids!

i put a lot of wait on with steroids ,which dos not help me with copd ,did you put wait on iam in constant pain with my leg at the moment and have been for 2 week today im just taking pain relief zapain please give me some advice thanks

Poor you. i had awful neck pain but since my physio stretched my neck it has not reocurred.

i have gone from 20 mlg to 12 since September by reducing 1 mlg at a time and just go back up 1 mlg if it doesnt work that time. Fortunately i had a months holiday in the sunshine and that did help.

on 12 mlg my head isnt as fuzzy so i feel so much better and can do more throughout the day.

After two weeks i will try and reduce again.

putting on too much wight with the steroids so have gone on a strict diet.

cut out carbs ( no potatos, or oasta or rice)

Gluten free bread with the little of it i eat.

lots of home made soups, veggies and meat, berries and nuts.

i am sure this is helping.

worth a try!!

Hi Elizabeth

I understand your frustration with Pred, perhaps you have to weigh up the benefits of being pain free and having good night sleep. None of us want to go up on our Pred, but when the constant pain is there which make our lives so miserable, I think if you increase your dosage of prednisolone sensibly and get better quality of life, it is worth doing. There are things and med you can do and take to combat osterporosis. I am sure you know the slow reduction method DSAS which is very effective to get you back to a lower dose without flares. good luck

I have giant cell arteritis (GCA) I have been on steriods for 5 months now , 2 weeks ago the doctor put me on an IV drip of a drug named ACTEMRA. I will take it once a month for the next 5 months.

I am feeling better each day. I am taking 5mg of predisone everyday, the rheumatologist tells me this drug ACTEMRA helps me to get of the steriods and reduces my pain.

Ask your doctor about this drug ,

You don't get addicted to steroids in the way most people mean - but your body may become dependent on them to function until the adrenal function returns once you are able to reduce the dose to low levels (below 5mg).

Has anyone considered you may have a back/shoulder muscle problem called myofascial pain syndrome? It is often found in patients with PMR as it is caused by the same inflammatory substances as PMR but instead of being systemic (all through the body) they are concentrated in hard knots of inflamed muscle fibres, usually formed in pairs on either side of the spine in the large muscles in the back, in shoulders, about rib level and in the low back. They irritate the surrounding muscle and that tightens to protect itself, causing pain. Both can irritate nearby nerves causing referred pain in the area supplied by that nerve. The tightness is particularly common in the shoulders and into the neck and shoulders - just as you describe. It often improves at higher doses of pred but then returns as you reduce. However, targeted local treatments such as myofascial release/therapeutic massage and forms of needling/injections can release the tension and improve the overall situation.

Hi elizabeth4

Ask your rheumy to send you for ultrasound on your shoulders to check for shoulder bursitis which affects the neck and causes pain in both neck and shoulders also ask for and x-ray of your neck for OA of the cervicle neck vertabrae as you may have Spondylosis of the neck, again causing pain in shoulders also top of arms...