Thrilled! I'm down to 4.5 from 20 mgs a year and half ago after being diagnosed with PMR. I am feeling good most of the time, yes!! Question - my legs continue to be weak and tend to have a mind of their own going wobbly, here and there when walking. Plus leg cramps beginning in the evening.
I also take Actrima (spelling?) and methotrexate. Should I call my rhumy? Thank you for your thoughts. Jody M
Hi Jody
Congratulations on getting down to 4.5mg. Most of our forum members will be in bed now but you will get replies in the morning from members who have experienced the wobbly legs along with your particular list of meds. Could I ask you to fill in your profile details please as this helps us give you relevant advice. YBB
Hi, will check profile in the morning. Thought everything was uptodate. Thank you for responding so quickly. It's appreciated. Blessings Jody M
Hi,
Just add a bit about yourself where it now just says “Hi I’m Amayeee” to give us a bit more about yourself, like how long you’ve like how long you’ve had your illness, what went on before, age, family. Just so we feel we know at but more about and can look at your profile before we answer another post. Plus country you life - some advice about medication or doctors for one country doesn’t apply to others for example.
If you tap on my avatar (picture) you can read mine, and see what we mean.
Just a quick question which might help.
What has your level of activity been in the last year , have you had to reduce the amount of exercise or general physical activity you can do because of your PMR?
Do you feel like you have lost strength in other parts of your body or your arms get wobbly while doing things too?
Let me know if you can it will help with the answer.
Pre onto rode stationary bike 5 miles a day 5 days a week and walked about a mile a day. Until I woke one morning and had to be helped out of bed, everything hurt. Rhumy diagnosed pmr. Had a biopsy for his that turned out normal. Did the ping pong decrease of prednisone. Rhumy recommend strength training and exercise at a comfortable level. That too was an up and down process depending on my pain level. Right now I am a my best bike tension ever plus back to daily walk. Thanks for listening😌amayeee
I think you might have just answered the question as to why you are suffering from wobbling muscles and limbs and getting cramps.
It's good if you can get back to exercise , and I love to hear the tales of those who are virtually fully back to intensive exercises like running or bikeing because it gives me hope for the future to do the same.
But , maybe , you are actually suffering because you might be doing just a bit too much and your muscles that went through some weakening , and ligaments that have some laxity from steroid use are struggling to keep up with your will to keep going at get back to old " athletic " exercise abilities.
They are tired and your joints are making some moans too.
It's worth listening to and making sure you get more rest during and between exercises and exercise days , more fluid and electrolytes during exercise and rest , cooling down in a warm shower and trying not to get " race fit" but just muscle fit .
I only say this because you are doing so well , and have got down to 4.5 mg and I wouldn't want you to keep pushing through it trying to get times on a bike or more reps going only to find that that causes you an injury or rebound flare which sends you down the knobbly snake again .
That would be a kick in the teeth of all of your amazing hard work.
Bet it's worse going down stairs than going up?
Take care keep exercising but maybe slow it down a little .
Be the tortoise that wins the race not the hare. xx
Thank you, sounds like wisdom in your words...just hate to give in to this dang disease😖think I am trying to push myself back to where I was pre-pmr.
It isn't giving in, it is coming to an agreement not to wake the gorilla:
Hello, perhaps adrenal function hasn’t kicked in properly yet. I used get the wobblies from 7mg until about 3mg. Your other meds won’t be helping with adrenal function. That’s just a guess without much other info to go on.
Actemra - it took me ages to get my head around spelling it!
I have to say - pred, Actemra AND methotrexate seems pretty overkill!! I found methotrexate made me feel quite strange. And over time you do lose fitness if you aren't able to keep exercising as you did before,
I always called it tocilizumab out of habit - but like you Acterma was so much easier to write ...
Pred can affect our electrolytes and maybe you could have those checked? I found, for example, that a salt deficiency was giving me headaches. If I let my magnesium intake slip I tend to get cramps in my calf muscles and feet. Just another thing to consider and if anything is out of balance usually very easily sorted. Magnesium is very easily absorbed through the skin so you could try an Epsom salts bath or footbath to see if that helps the leg cramps.
Even without steroids or a health condition , the cramps and wobbles of exercise more regularly happen because we aren't drinking enough fluids and aren't keeping electrolyte salts that we need for muscle and nerve health at the right level.
This may be one of those things that can't totally be blamed on Pred or PMR.
Ditto Heron's remarks re magnesium specifically. If I skip my daily dose of magnesium I pay with wicked restless legs at night. Such a challenge to figure out how our bodies behave, especially with PMR and Prednisone in the driver's seats. 🙏🏽💜
What form and how much magnesium? Thank you!
Easiest way is to soak in Epsom salts, either a full bath or a foot bath. About 15 or 20 minutes. If you may be magnesium deficient it's best to take any oral form (a capsule better than a solid tablet, easier to digest) at a different time from your calcium if you are taking calcium (extra calcium interferes with magnesium absorption). Follow suggestion for dosage on bottle, and find what works best for you. Lots of magnesium in many leafy greens, too, as magnesium is to plants what iron is to animals.
I just have a mag tablet in my multi vit /mineral packet. Not a huge dose but without doubt effective for me. I also severely limit my caffeine, finding that caffeine also contributes to what I have come to call "leg pain."
For long time, I just said "restless legs", but the truth be told...what I experience is outright leg pain...and magnesium seems to resolve my pain.
Hope you find your "magic bullet", we have plenty to deal with, without this nasty little issue.
🙏🏽💜 jerri
PMR diagnosed 2013, currently 7.5 mg pred
Thank you, sounds good.
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