Extreme leg pain, related to Prednisone taper?

[David in Seattle]

I've been on pred for about 6 weeks, max of 20, tapering now, down to 5. I've had this pain in my right thigh off and on during this period, not sure if it's related to the pred. Basically, if I go to stretch the leg, as you might lying in bed, I get a pain in the muscles just above the knee up to the middle of the thigh. But the pain would stop once the stretching stopped. Then last night, I woke with a pain in that area which has not stopped, and was so bad I had to take Lorazepam to get back to sleep. Hurts now just sitting here. I'm wondering if I might have had a "charlie horse" in my sleep from really stretching the leg while asleep. Has anyone ever had anything like this associated with pred? Only other drugs I'm taking are pancreatic enzymes, can't imagine it would be related to those.

 

[Crohn's 35]

Yep, when ever I got on my mobile bike or any slow or low impact exercises it would go into a major sharp pain down the leg and or knee... it only last a few minutes tho, but still hurts. Thank God I am finihed Pred!

 

[David in Seattle]

Thanks Pen, I'm down to 2.5 mg starting today. I was scheduled to go to an information session at a local university today for a program I was considering taking there, and now I can't, because my leg hurts so damned much! Hopefully it will at least be better tonight so I can sleep!

 

[Crohn's 35]

So your pain continues? Doesnt go away in a short period? Pred also affected my muslces too, sometime my fingers would go into a spasm. I hope you feel better too, what about a muscle relaxant?? It is painful, dont know how you last so long! I remembered when I used to do a lot of walking and then stopped, at night the pain was indescribable, hope that never happens again.

 

[David in Seattle]

So your pain continues? Doesnt go away in a short period? Pred also affected my muslces too, sometime my fingers would go into a spasm. I hope you feel better too, what about a muscle relaxant?? It is painful, dont know how you last so long! I remembered when I used to do a lot of walking and then stopped, at night the pain was indescribable, hope that never happens again.

I hope you never have yours again too, Pen!

Up until last night, it would only be present while I was stretching. I'm thinking I really must have stretched it in my sleep, then woke up with the pain.

I can't take muscle relaxants, like Cyclobenzaprine, because I have sleep issues as it is, and they exacerbate my RLS. As do OTC sleep aids. I do have a bunch of Lorazapam & Ambien, though.

I know what you mean about "remembering" what you used to do. A few years back, I was biking about 17 miles every other day, then walking about 5 miles every other day, now I'm lucky if I can get my ass off the couch. PLUS, I used to travel all the time, eat out in great restaurants, and have a nice wife (at least I THOUGHT she was nice... )! NO MORE! Dammit! Really has been a crappy 2 -3 years for me. If this leg thing means to continue indefinitely, I do think it may well be the final straw.

 

[ChefShazzy]

Hey David;
Sorry to hear about the leg pains... I hope they are just prednisone-related for you. I did have something similar myself, when I was tapering off, where I would get extreme muscle cramps (sometimes in my hands, or in my calf, but mostly in my feet - I just attributed it to long days of standing and using my hands at work). Like Pen said about her fingers, I could watch my hand or foot cramp up and spasm, it was scary to watch and painful as heck.
The worst was when the cramping in my legs or feet actually woke me up and as soon as I would drift off again, the cramp would come back!! Now that I have been off of the steroids for a few weeks it seems to have disappeared, and I'm working just as much as I was before.

 

[David in Seattle]

It's feeling better now. Nice to know it's probably just the pred, which I should be done with in 4 days. I've had the foot cramps too (that bottom of the arch thing where it seems like your foot wants to make a "fist". Ouch! :eek2: )

Sorry for being such a whiner, I was just bummed about not being able to go to the university. Now I'll have to wait until July. Oh well.

 

[shazamataz]

Hi Dave, I had some problems which I assume were associated with the pred taper as they seem to have gone now. Lots of aches and pains, but my main one, and very distressing, was sudden stabbing pains in my ankle that were like being stabbed by a needle or something. They would usually happen in the night and wake me up. My whole body would clench and i couldn't breathe for a few moments. I'd get them several times some days and really not good while driving the car!!!!!
I haven't had one for a while now, my GP had no idea what it was but sent me a referral for a nerve study. Not sure if I need it now!

 

[Astra]

Hi Dave
hope you're feeling ok now?
Try not to be down hunny
My toes cramp too, and I've tennis elbow, and me thighs hurt, and me ankles are gonna break, and ...... so on and so on
If I was a horse, they'd shoot me!
I've been trying to find out if there's a connection to joint and muscle pain and Pentasa, I'm on 8 a day for the last 4 months, and I'm getting more crippled by the day,
Dave, can you find something about it?
xxx

 

[Kegsworth]

Dave, I had the same problems while tapering pred. I'd wake up with muscle cramps/spasms and the muscles in my legs always felt extremely tight.

Good luck with the taper!

 

[Hedgehog]

Hi Dave,
Well done with the Pred taper!! I did get some joint pains too, mostly in my hip and thigh. Maybe has to do with the body having to re-adjust the cortisol levels to replace the Pred.
I'm looking forward to getting onto an immunosuppressant soon because iniflammation seems to spread once you've got an auto-immune disease. It can be depressing having one problem after another.
Hope your pain has stayed away,
Gail

 

[David in Seattle]

Joan - In "Less than 1% of patients in clinical trials" they do list myalgia (diffuse muscle pain), arthralgia (joint pain), malaise (just feeling lousy) and leg cramps as potential side effects, so it could well be the Pentasa. If you read much of this literature though, it seems just about every drug has just about every side effect in SOMEONE. I can tell you it gave me a helluva headache, but that's a "more than 1%" side effect. Still, I wouldn't be surprised if what you're experiencing isn't related to the Pentasa. You might get more meaningful input if you post a thread on it, see if others have had what you're experiencing.

 

[David in Seattle]

Hi Dave, I had some problems which I assume were associated with the pred taper as they seem to have gone now. Lots of aches and pains, but my main one, and very distressing, was sudden stabbing pains in my ankle that were like being stabbed by a needle or something. They would usually happen in the night and wake me up. My whole body would clench and i couldn't breathe for a few moments. I'd get them several times some days and really not good while driving the car!!!!!
I haven't had one for a while now, my GP had no idea what it was but sent me a referral for a nerve study. Not sure if I need it now!

Thanks Shaz, it does seem to just be the pred, which is reassuring.

So sorry about your cat, by the way

Thanks for the input, all!

 

[theend2]

Blame it on the prednisone. I get this arthritis pain in my knees, feet, lowerback, elbows, and hands as well as my neck. Totally stinks. I am on a taper also. I have seen 4 separate doctors. Both of my GI doctors said that it was from the disease and when you taper off the drug that is reducing the inflamation you will get this. The RA doc I saw also said the same thing. My primary care doc pretty much said if you taking prednisone and if you feel anything weird that it most likely the pred.

 

[Astra]

Thanks Dave,
you're right! all drugs list those symptoms don't they?
I bet it's right what theend and Gail are saying, it's the Pred taper, or coming off Pred completely, and cortisol getting back to normal, I will mention it to the consultant on Monday.
hope you're feeling a bit better?
xx