Heavy legs: I reduced my pred from 2mg to 1.5mg... - PMRGCAuk

PMRGCAuk

21,317 members40,425 posts

Heavy legs

Bluesew profile image
16 Replies

I reduced my pred from 2mg to 1.5mg after 5 weeks of feeling good, a week ago. I had a few withdrawal twinges at first but now I seem to be suffering with heavy legs making walking difficult. No shoulder or groin pain which are my usual symptoms. Does this mean I am having a flare? I emailed the hospital nurses but unfortunately no reply.

As always thanks in advance for any advice.

Written by
Bluesew profile image
Bluesew
To view profiles and participate in discussions please or .
16 Replies
PMRpro profile image
PMRproAmbassador

It could be - or it could be your adrenal glands not keeping up. If it gets worse I'd go back up for a bit before trying again.

That is a big proportional drop - do you drop overnight from all one dose to all the new dose? Or do you use one of our slowed tapers to introduce the new dose slowly?

Bluesew profile image
Bluesew in reply toPMRpro

Thanks. I have always dropped overnight before so haven’t used a slower taper - maybe time to use. I have just heard back from the rheumatology team and been advised to go up to 3mg.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBluesew

Okay, but for how long and then what? When you started reducing again do use a slower tapering method -they can be found in the FAQs under Tapering Plans

Bluesew profile image
Bluesew in reply toDorsetLady

Thanks. The advice was until my appointment on the 13th March which seems a bit longer than I would like.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBluesew

Yes that best part of a month, so no quick drop back down,….but maybe that’s for best if it is adrenals as well - gives them a bit of time to catch up.

Bluesew profile image
Bluesew in reply toDorsetLady

Yes difficult to know - also complicated by having a parathyroid op on the 7th March which I have also asked for advice about from my rheumy with no reply! Think I might just go back to 2mg tomorrow and see how I feel.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBluesew

Actually think it might be wise to stay at 3mg until after procedure on 7th March….

Bluesew profile image
Bluesew in reply toDorsetLady

Oh - is it advisable generally to up your steroid dose before an op? This is one of the questions I asked my rheumy.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBluesew

Not necessarily to up it -but probably not a good idea to drop it again you have been told up it to 3mg for now.

Bluesew profile image
Bluesew in reply toDorsetLady

Thanks.

PMRpro profile image
PMRproAmbassador in reply toBluesew

Not as a general rule - the anaesthetist will provide intra-op cover with hydrocortisone to compensate for the fact your adrenal glands aren't likely to do it for you. Be sure to tell the medical team - especially the anaesthetist! But it is never a good idea to change doses that you know you are good at around the time of any procedure. And it isn't unheard of for the procedure to trigger a bit of a flare.

VeeWat profile image
VeeWat in reply toDorsetLady

where can I exactly find tapering plans?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toVeeWat

in the FAQs - but have linked them here - healthunlocked.com/pmrgcauk...

Exflex profile image
Exflex in reply toBluesew

I would definitely recommend a slow taper. Numerically, a 0.5 drop is a 25% reduction. That’s 2 1/2 times the recommended decrement.

I’m at a similar stage dropping from 2mg. It took 5Wto go from 2 to 1.75, and I’m approaching the second week of the DorsetLady 5W schedule to reduce to 1.5mg.

Why rush when you’re so close, that’s what I say to myself. I know there’s a desire to get to 0, but one needs to apply the brakes!

humlies profile image
humlies

It has taken me 3 months to drop from 2 to 1.5mg, but I think I have managed it at last - although I am getting more pain in my hands and wrists than I have had before ; I wonder if this could just be rheumatic pain rather than PMR???

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tohumlies

Could well be… at higher doses of Pred it may have been masked… many find that happens.

Not what you're looking for?

You may also like...

‘Heavy legs’

In my 6th year of PMR and at 7.5mg after a few flares and hiccups. I had a cataract op five weeks...
Bachfugue profile image

Heavy legs

Hi, have had pmr now for 18 months, down to 8 mg pred but have really heavy feeling in legs which...

Legs feel heavy and wobbly

I’m having trouble with my legs. Before Christmas I went onto hydrocortisone to have a Synachen...
Suffolklady profile image

Weakness and heavy legs

I have had PMR since July 2022.I am currently on 5mg having had various flares and increased the...
simps999 profile image

Heavy legs with GCA

I have struggled for some days having returned from a wonderful holiday where I slept better,...
Bluey-1 profile image

Moderation team

SophieMB profile image
SophieMBPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.