weakness in legs

[pwalker801]

Question ~ was diagnosed in Febr 2018 with PMR & GCA started on 65 mg prednisone, have tapered and have been at 40 mg of Prednisone for a week I also take weekly injections of Actemra, sed rate is 2 and CRP. My question is for the last 3 days my hips, legs, are like they don't want to work like they are numb. Around the ankles cramping, they are heavy feeling and weak Steps are difficult. Wondering if I'm not adjusting to the taper or if this is a flare. Any ideas or suggestions?

[SnazzyD]

Difficult to say, however, I did find that Pred caught up with me after a few months. I was so weak and did everything in slow motion and could barely lift a bag of shopping. This was with no PMR and 2 days prior to diagnosis I was very fit. Others more knowledgeable will reply I’m sure, but a few questions. Are your legs swollen with fluid or normal? Which bit is numb, the skin, the muscle? Are you getting enough potassium rich foods and taking a magnesium supplement?

[Hidden]

I found this too after being on Pred for about a month my legs were like jelly with some cramping. I believe it is a side effect of Pred. It has improved now as I have reduced Pred which I am so thankful for but still have to pace myself.

[jrsteiger9]

I have a rare lung disease so do not have the same symptoms. I started on high dose of prednisone (80 mil.) and tapered down to 5 mil. two times. Am currently on 2-1/2 mil. for 18 mos. I finally stabilized in Dec. 2017. For me prednisone was/is like a miracle drug. It immediately helped me to be able to function normally. My doctor chose to keep me on prednisone because all the meds for my disease are experimental. I do have to be on oxygen 24/7 due to the damage to my lungs and living at a high altitude. When I travel to a low altitude, as of now, I don't need the oxygen. This disease is progressive so at some point, I will need it all the time. But, I do get a break when I visit places with an altitude of less than 2000. Where I live it is 7000 ft. Prednisone is the only drug that helps me. I know it is not good for other parts of the body, but right now I can't live without it.

[PMRpro Ambassador]

At that sort of dose you shouldn't have PMR-type flare symptoms. But high dose pred could be contributing. Have you tried magnesium supplements? That might help the heavy feeling and cramping. If it doesn't - ask your doctor to check bloods. Pred makes us lose magnesium and calcium through the urine and that also upsets the balance of other things - well worth checking for the sake of a blood sample being taken.

[BonnyQuine]

I started on 40mg pred for GCA, in Nov 2016. (Now hovering around 6.5mg - I find it most difficult to reduce at these low doses.)

In the early months, in addition to steroid-induced diabetes and extreme general fatigue, I had symptoms similar to what you describe - severe muscle weakness, most noticeable in my legs - quite disabling. I used to have quite frequent cramps, too. I think the muscle weakness was a side-effect of pred. I do still have it, but not nearly so badly now. It does improve as the pred dose comes down.

Never had Actemra so can't comment on that.