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?

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susanew | @susanew | Aug 25 8:42am

@ncgal Actually, Tylenol may not work for you but Ibuprofen, Advil or other NSAIDs might since they can help reduce inflammation. Because I have IBS and previously had ulcers, I am unable to use NSAIDs. If you look it up online, NSAIDs are the better choice if your body can tolerate it.

susanew | @susanew | Aug 25 8:47am

In reply to @biliejo "I have same symptoms. Stopped Prednisone in May. Mornings are difficult." + (show)

Has it gotten any better?

biliejo | @biliejo | Aug 25 9:18am

In reply to @susanew "Has it gotten any better?" + (show)

Not really. Some days better than others. I see my rheumatologist in September and will be getting some more testing done to see what my SED and CRP results are. I had a bone density scan which showed osteopenia and had Vitamin D test done which was normal. Inactivity just seems to promote more stiffness so I force myself to get up and walk and do steps. But...bottom line is...I'm off prednisone and ha.ve not returned to the pain levels I had before. I've lost weight and the roundness in my face. Hair has returned to normal too. So thankful for these things. Walking seems key!

jlo2252 | @jlo2252 | Aug 25 9:35am

In reply to @yogabonnie "thank you for all that information. I hope you continue to heal!!! what an amazing result..." + (show)

@dadcue
Really, I agree, what a amazing result with the actemra!!
Gives me hope for my future!
Just a footnote here:
I went to Universal studios in Hollywood for my grandsons 10th birthday and actually walked around the hilly terrain for about 8 hours—I was really pushing myself. My husband is worse off so he used our scooter! Even though I had pain, I was proud of myself🥲🙂!!! I did prepare ahead and took an extra 5 mg of prednisone when I first started out and of course brought my pain medication with me which I took on schedule. And a good time was had by all….

tadatada1 | @tadatada1 | Aug 25 3:22pm

In reply to @ncgal "I'm a spry 82 year old who developed PMR 4 years ago. I came off Prednisone..." + (show)

My symptoms are very similar I now have swollen ankles every day . My rheumatologist thinks it is corticosteroid myaliga. I as have stated in other replies I have made in the past have weakness, pain at night that wakes me up and the sinability to get up from a sitting position. From what I read it could take weeks, months or a year to disapate. I stopped cymbalta to help reduce swelling It did not work . Now I am trying celebrex with drs permission Wish me luck

jlo2252 | @jlo2252 | Aug 26 5:53am

In reply to @susanew "@ncgal Actually, Tylenol may not work for you but Ibuprofen, Advil or other NSAIDs might since..." + (show)

@susanew
NSAIDs are ok only if you can tolerate them and that you are not on prednisone too. Prednisone and NSAIDs together are very hard on your GI system and most doctors will tell you not to take them.
Years ago I had a severe flare of my reactive arthritis and could not walk! Doctor had to put me on Meloxicam (a nsaid) and prednisone along with Carafate to protect my stomach 🥲

DadCue | @dadcue | Aug 26 6:21am

In reply to @jlo2252 "@susanew NSAIDs are ok only if you can tolerate them and that you are not on..." + (show)

Did you ever get flares of uveitis along with the flares of reactive arthritis?

After I was diagnosed with reactive arthritis I never had any need for a rheumatologist. I always had a flare of uveitis and my ophthalmologist always prescribed 60 - 100 mg of prednisone which put the uveitis flare into remission and stopped the joint and back pain too. I had flares of uveitis once or twice per year for nearly 20 years. I didn't have any additional health problems so I also listed my ophthalmologist as my primary care doctor.

Everything changed after PMR was diagnosed when I started seeing doctors galore. They were finding all kinds of problems after PMR was diagnosed. I didn't know all the Prednisone was having harmful effects on me because the uveitis flares didn't last long. I was always able to taper off Prednisone in a couple of weeks for the uveitis flares. After PMR was diagnosed, it took me 12 years to taper off Prednisone.

slf202mcinfo | @slf202mcinfo | Aug 26 7:14am

Diagnosed with PMR in February, CRP test results showing inflammation at 66. Started prednisone 20 mg, considerable progress, CRP results now 6 (normal 0-8) and prednisone 10mg. BUT I still have considerable stiffness and recently pain that feels like nerve pain, buttock and one leg. Sciatica on top of PMR?

jlo2252 | @jlo2252 | Aug 26 7:30am

In reply to @dadcue "Did you ever get flares of uveitis along with the flares of reactive arthritis? After I..." + (show)

@dadcue
No, thank god. It was bad enough when I was first diagnosed—the most painful eye infection I ever had. My primary later told me he was worried I would go blind! The whites of my eyes were totally red and they were putting like three different drops in my eyes, in addition to the prednisone they gave me for all my inflammatory symptoms.
My infections all cleared up within a month, arthritis lasted about a year, after that I did not need my rheumatologist either cause I went into remission for 20 years…!

jlo2252 | @jlo2252 | Aug 26 7:39am

In reply to @jlo2252 "@dadcue Really, I agree, what a amazing result with the actemra!! Gives me hope for my..." + (show)

@tuckerp
Update to my universal studios trek::
Ok , I did have some hip and leg muscle pain for a couple of days! But normal for anyone who does more than their usual activities, lol. When we got home we were exhausted and I did have a nice long rest! 🙂. The fatigue was worse than the muscle soreness but totally worth it!