tapering

[deeperpurple]

got a text from my doctor saying my inflamation and bone denseity test were normal and advised to taper 1mg a month but ive just dropped from 5mg to 4.5 mg trouble is i still have some mobility issues getting up and down off the floor what to do ??

[SheffieldJane]

Lovely news! Your stiffness is likely to be from muscle weakness. Perhaps some gentle Aquarobics or swimming in a suitably non-competitive class would be a good start?

[Purpleazalia]

I avoid it wherever possible, or use work arounds!!

I have a small childs sturdy wooden stool that I use sometimes. I can get up from it more easily than the floor.

If I have to get down on the floor, I make sure there is something close by that I can use to hold onto.

If I have a stubborn stain on the floor that my mop can't deal with I put my foot on a cloth and use my foot to give it a rub!

I have a friend with mobility problems who has a gadget for everything, including one to pick up items that have ended up on the floor.

[PMRpro Ambassador]

Mmmm - but the reason your inflammation markers are normal is because you are on an adequate dose of pred. You are also at the threshold of your adrenal glands having to start to produce cortisol again. And because of either or both factors 1mg a month is far too fast/much to reduce now.

1/2mg can make a big difference in PMR as a lot of people will tell you and adrenal function returning isn't an overnight lightswitch moment. Top endocrinologists say not more than 10% of the current dose and at 5mg that is already down to 1/2mg.

Why oh why are they in such a hurry at this stage where the dose is fairly innocuous?

[deeperpurple in reply to PMRpro]

I agree and will be booking a phone call with her thank you

[tempusfugi in reply to PMRpro]

Seems to me that all I hear about nowadays is the medical profession (whoever that may be ie GPs/Physician's Assistants/Rheumies) pushing sufferers to reduce as quickly as possible, whether in pain or not! Grrr!

[Mayadill in reply to tempusfugi]

Anyone ever done a poll?! Of the people who turn to this forum for info/advice/sense, how many have probs from the disease and how many from the docs supposed to be remedying it. Three against one - PMR, Pred and medic - just is not fair! Ref! Ref!

[SnazzyD]

What happens and where when you try to get off the floor exactly?

[deeperpurple in reply to SnazzyD]

I just find it difficult to get up without finding a chair to help me I can walk lift my knees up but still have that problem getting up

[SnazzyD in reply to deeperpurple]

I was meaning, how do the bits fail you? Is it weakness, joint pain, muscle pain?

[deeperpurple in reply to SnazzyD]

mostly weakness

[SnazzyD in reply to deeperpurple]

In that case I’d think about physical deconditioning and low adrenal function. I found 0.5mg could make a huge difference to suffering from lack of cortisol or not. It can take weeks or months for your adrenal glands to realise they need to make up for what is no longer coming from the Pred.

[DorsetLady PMRGCAuk volunteer in reply to deeperpurple]

Further to SnazzyD comments re adrenals -have a look at this -

healthunlocked.com/pmrgcauk...

[Viveka in reply to deeperpurple]

Suggest you consult a physio to see what is going on. Your bio says no other issues than PMR, and with aches and pains more or less controlled it's not obvious why you would struggle with this. There is almost certainly a solution; may need strengthening exercises so it's better to look into it now rather than going to work arounds like grabbers at this early stage.

[Mayadill]

Yikes! My gut response is increase the dose before you can't get up. That happened to me. Before I was actually taken to hospital, where I was diagnosed, there was an episode. i was dosing on the sofa only when I surfaced i couldn't stand. Spent half the night trying to get up and the details are a horrid blur but I ended on the floor because I thought I could lever myself up from there. For me in answer in Snazzy, what happens is exactly nothing. Brain says make necessary movements and nothing happens. I ended up making my way on my bottom to my phone and called 999. The paramedics got me up and checked that I could get up and pottered off again. That was about 2 weeks before i was taken to hospital on a stretcher. The floor is something I view with extreme caution, like a dangerous snake! Been there by choice i think three times during my PMR, cleaning, but ONLY when I was absolutely sure of my hips, bouncing up and down like a rubber ball.

[piglette]

It is a good idea to get the actual figures from your test results. You can then store them for future consultations, possibly with new doctors. My GP thinks a figure of 50 for my ESR is satisfactory!

[Bridge31]

My immediate reaction was … what on earth were you doing on the floor ? 🤣

[deeperpurple in reply to Bridge31]

just seeing how far down it was lol😜

[DorsetLady PMRGCAuk volunteer in reply to deeperpurple]

not as far down as it is up I find! 🤔

[herdysheep in reply to DorsetLady]

🤣🤣

[deeperpurple in reply to DorsetLady]

😂😂😂

[DorsetLady PMRGCAuk volunteer in reply to deeperpurple]

just seen this on FB - and thought of you - even though you are male…. 🤣😂

Floor

[deeperpurple in reply to DorsetLady]

😂😂😂

[PMRnewbie2017]

Having spent the past two years trying to get below 1.5mg and now feeling consistently great on 2mg, please educate your gp regarding secondary adrenal insufficiency. I have had lively discussions with Rheumies about this too. They just don't get it and I've even had one rather forceful character tell me " You don't have Addison's disease". That is primary AI what we get is termed secondary or iatrogenic (drug induced). Following the 10% rule at this stage is critical.I also have weak thigh muscles and have discovered that living in a bungalow has disadvantages- no stair climbing! Building muscle at our age is hard but not impossible and because of the PMR, exercise should be undertaken gently and increased sensibly.