1. < Polymyalgia Rheumatica (PMR)

Off Prednisone but Residual Stiffness

Posted by susanew @susanew, Aug 21 6:38pm

I am finally off prednisone but deal with leg and thigh stiffness not only upon awakening but continuous until I take a Tylenol Arthritis which helps tremendously but there is still some lingering stiffness. Will this resolve itself and will it take a long time to feel normal again?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

susanew | @susanew | Aug 23 12:31pm
In reply to @jlo2252 "@susanew What you describe sounds about the norm for a lot of us. Mobility may not..." + (show)
@jlo2252

@susanew
What you describe sounds about the norm for a lot of us. Mobility may not be at 100% but it does get better the more we move around!
Good luck on your journey!

Jump to this post

Thank you.

REPLY
jlo2252 | @jlo2252 | Aug 23 1:44pm
In reply to @jlo2252 "@susanew What you describe sounds about the norm for a lot of us. Mobility may not..." + (show)
@jlo2252

@susanew
What you describe sounds about the norm for a lot of us. Mobility may not be at 100% but it does get better the more we move around!
Good luck on your journey!

Jump to this post

As we age a lot of us have bones that just wear out, leaving us with osteoarthritis….
You may have stiffness when you wake up that eases up after you have moved around a bit.
Tylenol arthritis strength, otc analgesic cremes like Aspercreme (Trolamine salicylate) and exercise can help relieve pain. Also physical therapy and massage therapy work wonders!
Consult your doctor if you feel you have this condition!
Good luck!

REPLY
yogabonnie | @yogabonnie | Aug 24 6:31am
In reply to @dadcue "It might not get better but congratulations for getting off prednisone. My immediate thought was if..." + (show)
@dadcue

It might not get better but congratulations for getting off prednisone. My immediate thought was if Tylenol Arthritis helps tremendously, you might not be having symptoms related to PMR.

I remember when my rheumtologist requested that I come off prednisone to be diagnosed with PMR. I think it is sometimes necessary to come off prednisone to be diagnosed with something else.

I have been diagnosed with underlying medical problems since coming off prednisone. Fortunately there have been better treatment alternatives instead of Prednisone to treat the other problems.

Jump to this post

was it osteoarthritis/? and if so, what treatments? thanks!!

REPLY
1 reply
ncgal | @ncgal | Aug 24 7:52am

I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone last June and for the first month was so fatigued that I just sat around and did very little. I figured it was the adrenal glands adjusting to being off Prednisone. However, in the past few weeks my energy has come back and I have been able to get things done that I was never able to do for years. Unfortunately I have now developed the pain in my hips and legs that make it difficult to get a good night's sleep or even do chores round the house. Getting up from a chair is so painful that I have to stand for a few minutes before moving. I hate to go back on Prednisone and unfortunately my rheumy appointment is not until October. I think I will try the Tylenol Arthritis and see if that helps.

REPLY
4 replies
DadCue | @dadcue | Aug 24 8:34am
In reply to @yogabonnie "was it osteoarthritis/? and if so, what treatments? thanks!!" + (show)
@yogabonnie

was it osteoarthritis/? and if so, what treatments? thanks!!

Jump to this post

I have severe spinal stenosis. Inflammatory arthritis along with osteoarthritis are both contributing to my problems with my lumbar spine. The inflammation associated with PMR doesn't help the situation.

I was taking Actemra for PMR and doing well until the Covid epidemic happened. Supplies of Actemra were diverted to seriously ill Covid patients. I was okay with that because hospitalized patients with Covid had a greater need for Actemra than I did.

During the time I was off Actemra my overall condition deteriorated. I needed prednisone again since I was unable to take Actemra. My PMR symptoms were returning but it was a combination of things that made my spine worse. The biggest concern was the formation of a synovial cyst on my lumbar spine. The spine surgeon said paralysis was a distinct possibility if I didn't have surgery. There wasn't enough space in my spinal canal for a synovial cyst.

The MRI of my spine when I was off Actemra but taking prednisone said the following:

"L4-L5: Broad-based disc herniation with pronounced bilateral facet degenerative changes and severe right greater than left foraminal narrowing. There is a synovial cyst arising off the medial aspect of the left facet joint and compression of the right exiting nerve root.

Combination findings with severe central spinal canal stenosis at this level with foraminal narrowing."
https://my.clevelandclinic.org/health/diseases/24856-foraminal-stenosis
-------------------------------------

My symptoms improved when the supplies of Actemra improved. I was able to discontinue prednisone after Actemra was restarted.

My MRI after I was back on Actemra said the following:

"Multilevel degenerative disc disease of the lumbar spine with severe central canal stenosis.. The synovial cyst at L4-L5 has decreased in size since March 2022 and is now barely measurable. Regardless, there is still severe canal narrowing at this level."

Since all of my symptoms improved, the spine surgeon said surgery could be postponed saying there was more space available in my spinal canal and less foraminal narrowing.

REPLY
1 reply
yogabonnie | @yogabonnie | Aug 24 10:36am
In reply to @dadcue "I have severe spinal stenosis. Inflammatory arthritis along with osteoarthritis are both contributing to my problems..." + (show)
@dadcue

I have severe spinal stenosis. Inflammatory arthritis along with osteoarthritis are both contributing to my problems with my lumbar spine. The inflammation associated with PMR doesn't help the situation.

I was taking Actemra for PMR and doing well until the Covid epidemic happened. Supplies of Actemra were diverted to seriously ill Covid patients. I was okay with that because hospitalized patients with Covid had a greater need for Actemra than I did.

During the time I was off Actemra my overall condition deteriorated. I needed prednisone again since I was unable to take Actemra. My PMR symptoms were returning but it was a combination of things that made my spine worse. The biggest concern was the formation of a synovial cyst on my lumbar spine. The spine surgeon said paralysis was a distinct possibility if I didn't have surgery. There wasn't enough space in my spinal canal for a synovial cyst.

The MRI of my spine when I was off Actemra but taking prednisone said the following:

"L4-L5: Broad-based disc herniation with pronounced bilateral facet degenerative changes and severe right greater than left foraminal narrowing. There is a synovial cyst arising off the medial aspect of the left facet joint and compression of the right exiting nerve root.

Combination findings with severe central spinal canal stenosis at this level with foraminal narrowing."
https://my.clevelandclinic.org/health/diseases/24856-foraminal-stenosis
-------------------------------------

My symptoms improved when the supplies of Actemra improved. I was able to discontinue prednisone after Actemra was restarted.

My MRI after I was back on Actemra said the following:

"Multilevel degenerative disc disease of the lumbar spine with severe central canal stenosis.. The synovial cyst at L4-L5 has decreased in size since March 2022 and is now barely measurable. Regardless, there is still severe canal narrowing at this level."

Since all of my symptoms improved, the spine surgeon said surgery could be postponed saying there was more space available in my spinal canal and less foraminal narrowing.

Jump to this post

thank you for all that information. I hope you continue to heal!!! what an amazing result after beginning the Actemra again.

REPLY
1 reply
yogabonnie | @yogabonnie | Aug 24 10:38am
In reply to @ncgal "I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone..." + (show)
@ncgal

I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone last June and for the first month was so fatigued that I just sat around and did very little. I figured it was the adrenal glands adjusting to being off Prednisone. However, in the past few weeks my energy has come back and I have been able to get things done that I was never able to do for years. Unfortunately I have now developed the pain in my hips and legs that make it difficult to get a good night's sleep or even do chores round the house. Getting up from a chair is so painful that I have to stand for a few minutes before moving. I hate to go back on Prednisone and unfortunately my rheumy appointment is not until October. I think I will try the Tylenol Arthritis and see if that helps.

Jump to this post

I am 78 soon and coming off nearly 8 years of prednisone. down to 1.5 and having lots of aches and pains. I hope it goes away as I have always also been super active. I think prednisone masked a myriad of osteoarthritis.... and now I seem to be paying the piper. I just ordered Tylenol Arthritis. Good luck! hope it works for us! thanks

REPLY
susanew | @susanew | Aug 24 2:38pm

Hoping the Tylenol Arthritis works for you. I try to limit to one pill daily although admittedly, after 12 hours, I do start to feel a bit achy.

REPLY
1 reply
ncgal | @ncgal | Aug 25 6:36am
In reply to @ncgal "I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone..." + (show)
@ncgal

I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone last June and for the first month was so fatigued that I just sat around and did very little. I figured it was the adrenal glands adjusting to being off Prednisone. However, in the past few weeks my energy has come back and I have been able to get things done that I was never able to do for years. Unfortunately I have now developed the pain in my hips and legs that make it difficult to get a good night's sleep or even do chores round the house. Getting up from a chair is so painful that I have to stand for a few minutes before moving. I hate to go back on Prednisone and unfortunately my rheumy appointment is not until October. I think I will try the Tylenol Arthritis and see if that helps.

Jump to this post

As a follow up, I did try the Tylenol Arthritis meds, but of course it didn't work. PMR is not about the bones, but the ligaments and tendons. Guess I'll have to go back on Prednisone. I have a call into my rheumy.
Thanks for the replies.

REPLY
biliejo | @biliejo | Aug 25 7:44am
In reply to @ncgal "I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone..." + (show)
@ncgal

I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone last June and for the first month was so fatigued that I just sat around and did very little. I figured it was the adrenal glands adjusting to being off Prednisone. However, in the past few weeks my energy has come back and I have been able to get things done that I was never able to do for years. Unfortunately I have now developed the pain in my hips and legs that make it difficult to get a good night's sleep or even do chores round the house. Getting up from a chair is so painful that I have to stand for a few minutes before moving. I hate to go back on Prednisone and unfortunately my rheumy appointment is not until October. I think I will try the Tylenol Arthritis and see if that helps.

Jump to this post

I have same symptoms. Stopped Prednisone in May. Mornings are difficult.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.