Eruptive leg and hip jerking at night

[Mariel]

I have often posted the I got relief for leg jerking and spasming from magnesium, but right now, the past few weeks, this is out of control. I am wondering if anyone has taken steroids for this? That would usually be prednisone I suppose, but I can't take it. I can take Kenalog shots, a form of cortisone, and had it when skin itching was bad, and it helped. I am seeing the P.A. tomorrow, and I wonder if I should suggest Kenalog again, for this. Do you find help for spasms and jerkiness from steroids?

I am awake half the night with this. Obviously it's getting a lot worse than it was. I have never taken steroids for any neurological flares, not even ON, because my neurologist when I had the ON did not believe in using steroids for ON. I recovered from the ON without steroids.

This, however, is keeping me awake almost every night. Sometimes it starts in the evening before bedtime.

Mariel

[carly]

I can relate to the leg spasms at night and wanted to share that what works for me is taking diazepam before bed. Hope you find relief soon!

[stillstANNding]

Mariel,

Heck, I plan to take some magnesium next time things get out of control for me. Things have been reasonable, not quiet, on 3 mg of clonazepam divided though-out the day, In the last year and a half to 2 years I have it back to 2mg. Sometimes 10 mg of baclofen helps on a bad night. Having all those spasms (?) is very tiring (I just hope they burn calories).

I know you are sensitive to many drugs and/or additives so none of this may help you. My last card to play is a hot bath (yeah, pretty warm) but only w SO right there w me.

Best to you,
ANN

[agate]

This isn't the same problem exactly but for quite a while I was having painful cramps in my thighs that woke me up at night. I had to just wait them out in agony.

Physical therapy sessions helped, and continuing with the prescribed exercises has helped too. For several years now I've had only very occasional slight cramps, nothing like they used to be.

[Mariel]

Thanks, friends. Agate, PT has been helpful for me too, but things are beyond that for now.
Ann, I do take clonazapam but not as much as you do. The PA recommended a Parkinson's drug low dose to me today--it is safe for Porphyria, which I also have. She keeps her lap top open to the Safe/unsafe drugs list when I am there. she was going to give me Kenalog but they could not find it anywhere in town, any of the pharmacies or clinics. They had it before. I filled the prescription for the Parkinson's drug (off label for me) but am not sure I'll take it.
Carly, I'll look up what Diazapam is, and see if I can take it.

The Physician's Assistant is smarter than all of the "specialists" I know, partly because she can take time with me. She said my problem may be in part due to low Ferritin. And she sent me for a Ferritin test. I already know it will be low, if not Zero, due to the phlebs I get every six weeks or so to keep my red cells low. It really means I should go for radiation at Mayo, but so far my Hemo won't OK it--I see him tomorrow. The radiation would make it so I wouldn't need the phlebs so much as it would suppress over-active bone marrow. He says it might put me into end-stage of the Polycythemia Vera I have, but those I've talked to who have taken it have not found that it does this. I'll be end-stage something if I don't get help soon, anyway.


I am disappointed not to get the Kenalog as it helped so much last time, in October.

[stillstANNding]

Mariel, sorry about the Kenalog.

Diazepam is Valium.
ANN

[Mariel]

Thanks, Ann, I looked up diazepam and found it was Valium. I can't take Valium (have paradoxical reaction) but I do take Klonopin, another benzodiazapine with a very different outcome for me.

I had less jerking last night by slightly upping the Klonopin. I filled the prescription of the Parkinson's drug but didn't use it.
I won't try something new like that unless I really have to. Klonopin helps.