Heavy wooden legs while on Pred

[Suedeshayes]

Does anyone have this problem? And a heavy head? Sue

[PMRpro Ambassador]

I think I have heard quite a few people mention similar problems in the past. Are you sure you are on the right dose of pred? Has it always been so?

[Hidden in reply to PMRpro]

FYI - I did not have this issue initially... I had aches and pains, in my legs and arms, but not this "heaviness."

It wasn't until I was on between 60-80 mg of Pred that this side effect reared it's ugly head. You literally find it almost impossible to lift your feet because your legs feel like they weigh a ton. : (

[Suedeshayes in reply to PMRpro]

It’s actually my friend, who was diagnosed in February with GCA. She started on 60 mg but by end May, she was on 17.5mg. She has gone up to 20 and has started to feel better. Thank goodness, she was at her wits end. Thanks for your sound advice. S

[Hidden]

Ohhhhh yes! Not so much recently (thank goodness!!!) as I've reduced Pred down to 40 mg from 80mg! ... but my legs (and arms) would feel like they had been filled with wet cement! I would struggle to put one foot in front of the other and stairs were impossible!!!! I had to rest after each stair! Carrying my handbag also became a problem... it seemed like it weighted a TON!

[Constance13 in reply to Hidden]

I’m having trouble with ‘balance’. I googled nhs and downloaded some exercises I can do. The one which is the most difficult is putting one foot immediately in front of the other then moving forward slowly. I never do this if there isn’t a wall nearby.😏😏

[Hidden in reply to Constance13]

Yes, I bump into walls and door jams, frequently. When I walk and hold hands with my husband, he accuses me of wobbling, as we might start out on the left hand side of the sidewalk and I slowly (but surely) wobble him to the right side... or vice versa! He finds it very annoying! I have no idea I'm doing it!!!!!

[Constance13]

I’ve had this/these problems since PMR joined my OA. Depressing, isn’t it? Only rest helps.💐💐

[HeronNS]

Yes. More like I'm walking through molasses. Has occurred at a number of stages, not consistently through PMR/pred journey, and noticeable when climbing stairs or, currently, when needing to walk fast if time is short.

[Suedeshayes]

Thank you for all your comments. This info is for a friend of mine who has GCA but hasn’t yet joined the site. Thanks. What a great forum. Sue

[MayH]

My legs and arms felt as if they had concrete blocks attached.

[Hidden in reply to MayH]

YES!

[scats]

We live in the country and walking on rough ground ( ie. the lawn ) was almost impossible because feet had to be lifted and moved forwards. It meant that it took longer before I could walk any distance. Fingers crossed it seems to be easing. I am currently on 12mg for the third time.

[PMRpro Ambassador in reply to scats]

I do still find uneven ground very hard work!

[scats in reply to PMRpro]

The main frustration is that we live near the sea. I can see it from upstairs, but I can't reach it yet cos its 4 fields away.I made half way yesterday, getting there.....slowly.

[PMRpro Ambassador in reply to scats]

We have a lovely walk along the river which is laid as a cycle track with a pedestrian path next to it. In many places it is all tarmac - this section has tarmac for the cycles and gravel for walkers. So 95% of the walkers walk on the cycle track...

I ask myself why they thought we wanted to walk on the bumpy bit?

[Hidden in reply to scats]

Keep going. You are nearly there!!!

[scats in reply to Hidden]

Thanks. Trouble is I was nearer than this 18 months ago!

[Hidden in reply to scats]

That's aggravating. You are going forwards again though. I will keep my fingers crossed that those fields will look and feel smaller than they do at the moment. 🌻

[scats in reply to Hidden]

thanks

[Grants148]

Yes ,l too have heavy feeling in my legs,and sometimes swelling above my knees,l also like mamici find even a handbag seems too heavy on my arms and shoulders.l can only go up and down stairs very slowly and carefully,and walking too far always makes my legs much worse the next day.l am only on 3mlg. Of the preds now but not feeling my normal self,l tried to go down to 2mlg but after a few days had to go back up again.l do find that the warmer weather does help and l have less pain in my legs than during the cold weather.All good wishes to you Sue .

[Suedeshayes in reply to Grants148]

Thank you. It’s for a friend. I have polymyalgia and am managing ok so far. She has GCA and Pred, I think, came down too quickly.

[tangocharlie]

Yes it was one of my first symptoms before being diagnosed. The Doctor told me it was because I was unfit and needed to do more exercise, and I protested that I was struggling to even walk and had always been active up until then, to which he said well you soon get out of condition if you stop exercising. It was easier at higher doses of Pred (7.5 or 10).

[PMRpro Ambassador in reply to tangocharlie]

Hmm - in 2 days? That was the difference between me going to the gym and being able to do things normally and my not being able to use the cross-trainer...

[shazstep]

I have recommenced walking in heated pool. It is much easier than walking footpaths or shops. Most days I am only capable of about 1/2 hour then I come home and go back to bed for a while. I saw my Gp this afternoon. He is hoping to reduce my preds from 25 to 20 when he gets my blood test results.

[Toenti]

Yes, I know that feeling only too well. The first year on preds for PMR I seemed to manage better then now with walking. But my resque is my e-bike. I can manage that very well instead of walking. Maybe worth a try?

All the best.

[Suedeshayes in reply to Toenti]

Hi, i have an electric bike. They are amazing and I do 8-10 mikes quite often. I also walk a couple of miles every second day. The heavy legs question was for my friend, who has GCA, but I am amazed at the replies. She felt reassured by all the replies. What a great site this is. Sue

[nuigini]

Hi Sue. Here's a description of my legs for seven years prior to PMR diagnosis:

Legs constantly feel like cement noodles (heavy and weak) After walking of standing for any length of time they get progressively worse. It becomes harder to walk and to raise the feet. Doing stairs becomes almost impossible. When sitting down after standing for 1 - 2 hours feet and toes feel bruised and tinkling occurs throughout the calves…like little sparks going off in the muscle.

After resting for 30 minutes to an hour able to get up and start again.

Even on a ‘good” day, stairs have to be taken slow and easy, often favoring the left leg (some arthritis in that one) i.e. up with the good down with the bad.

Getting in and out of a vehicle requires concentrated effort to lift the leg into the car (left worse than right). Same situation getting in and out of the bathtub shower. Don’t take baths due to difficulty getting in and out of the tub.

Getting into a kneeling position is difficult and once on the knees the leg pain is intolerable. Not knee pain…shin pain.

No over-the-counter pain medication had any effect in relieving leg issues.

Initial dose of prednisone was 40 mg. My legs came back. I could run up and down the stairs for the first time in years! Doctors all agreed my leg issues were PMR.

After a flare at 25 mg my leg issues returned, even when I went back to 40 mg for a month. Four years on and they're still as described above.

[Gaycreasey]

YES, particularly today. I went off to play Tabletennis with U3A for an hour and my legs felt like lumps of wood. I do have painful calf muscles regularly but this was very different. It felt like walking through treacle ( not that I’ve ever done that). I am currently reducing from 6 to 5.5mls using the DSNS method.

[Perkey]

All too familiar I call it wearing my lead trousers I am on 5 mg but Dr. says to try 4 for a month then 3etc I will give it a go but my legs have been like this for ages and rheumi at time said you cant have poly in the legs ! Yes stairs are awful mine are particularly steep. I watched Prince Harry’s wedding and I was envious of them walking down that lovely staircase with nothing to hang on to !

[PMRpro Ambassador in reply to Perkey]

"rheumi at time said you cant have poly in the legs"

Mine is! And of course you can - especially when you have a more diffuse large vessel vasculitis that is affecting arteries in the lower abdomen.

Show him this paper

academic.oup.com/rheumatolo...

where some of the top names in the field have a lovely diagram in Fig 1 showing what is affected by which of PMR, GCA and LVV. The last time I looked my thighs were part of my legs...