movement

[PickleballWetheral]

I have PMR and last night I fell out of bed it took me 40mins to get up. My body wouldn’t move. Is this normal for the condition. My movement is quite slow. I have had PMR for about 6 months and am on 10mg prednisone. Can anyone advise.

[SheffieldJane]

In the early days of PMR I couldn’t get in and out of bed or the bath without assistance. I can imagine being pretty helpless if I fell out of bed. It is essential that you are treated with Prednisalone adequately. I needed 20 mgs initially to obtain full mobility and 6 weeks before I was ready to taper down - never more than 10% of my dose with a 3-4 week gap between drops. I used the dead slow nearly stop method outlined in the FAQs section of this website. I would stop tapering if my symptoms were returning in earnest after 2-3 days and give myself a rest from tapering if need be. The overall aim being to find the lowest possible dose that gave me relief. I stayed on 7 mgs for a year. This may seem very slow but I got through without flares and led a relatively active life. I think I would be “ home free” if GCA hadn’t come along when I got to 3 mgs. Tortoise and the hare. Good luck, let your doctor know that you are not managing sufficiently.

[Nosirrok in reply to SheffieldJane]

I did fall! Before I was formally diagnosed in Feburary 2022 I fell over in the bathroom when my legs could barely move and my arms were unable to reach for a grab hold. By blocking the door nobody was able to help. I lay on the floor for some while, gathering strength, until I could slowly get onto my knees. Initial pred dose was 30mg. One year later I'm now on 5mg and tapering very, very slowly as suggested on this site. Two local GPs recommended much faster tapering but I chose to not take that advice! During last Summer, being somewhat impatient, I tried to taper more quickly and pain followed so I had to up the dose to a level which gave relief. I've come to terms with the fact that recovery is a long haul. I believe this acceptance is less stressful than the impatience of wanting to come off pred ASAP which must be good. I hope all goes well for you.

[SheffieldJane in reply to Nosirrok]

I agree with PMRPro that at your stage of PMR this is unusual and definitely not typical. I hope that nothing else has joined the party. It maybe the manifestation of a severe flare but it needs investigating pronto.

[PMRpro Ambassador]

As soon I started on pred the inability to move disappeared very quickly. That said, i'd struggle to get up off the floor but that is because I can't put weight on my knees on a hard floor.

When you say you couldn't move - in what way? How are you in the daytime? Are you sure you are on enough pred?

I think this is something you should discuss with your doctor because it isn't really typical of PMR per se.

[Seacat30]

Would you normally be able to get up from the floor in daytime? Are you wondering whether you couldn't because your pred was low at night or because you were in shock?

[Grannyasbo]

Hi. I’m not an expert by any means but falling out of bed as an adult doesn’t seem quite right to me. And falling over in any situation is a risk. A chat with your GP about it so she can check you over and maybe a referral to a local falls service (if your area has one) may be in order. Good luck. GA

[Karenjaninaz]

I am 80 and been in pred since 2015. Asthma caused mega doses requiring, again, tapering. I am now on 8.5-8mg. I also have a fused, rodded, spine for scoliosis.I can get up off the floor easily- The trick is exercise- gradually increasing. There’s no other solution.

It is so easy, with this condition, to just comfortably sit there.