Off Prednisone but still feeling new type of pain

Posted by abbeyc @abbeyc, 6 days ago

I've been off Prednisone for 6 months. (I was on Prednisone for 3.5 years). My blood inflammation markers have been normal for years and multiple Rheumatologists and doctors all said I no longer had PMR. So I went off steroids.

So now the question: Has anyone else gone off Prednisone but still plagued with mysterious aches and pains (muscles and joints - but not as severe or similar to PMR)? It's something else, I think.

I can get along okay during the day, but first thing in the morning I'm very stiff and it hurts to move. Also if I sit too long, then the same thing happens. Once I get moving it gets better quickly. Although throughout the day knees, hips and upper arms can occasionally hurt. I can't do things like I used to.
I've seen so many doctors who can't tell me what's wrong.

anyone else?

I don't want to go back on Prednisone and I don't want to resort to other drugs, but quality of life is definitely suffering. So wondering if maybe I should be taking some sort of medication (not Prednisone).
any suggestions?

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

tuckerp | @tuckerp | 4 days ago

In reply to @abbeyc "@tuckerp okay. Great idea. So are you better now pain-wise as a result?" + (show)

@abbeyc I am mostly better. I take a daily lisinopril for BP. (10mg). I take Repatha twice a month injection for cholesterol. Then I take a handful of supplements. I found the turmeric was causing a loose stool. I am mostly pain free. I think at 73 aches and pains must be the norm. I am mentally pretty sharp and physically active. I go to gym every day. Play pickleball. Hiking. Right now my right knee has a catch in it but a month ago it was my left shoulder. Who knows. Not sure which one is better Tylenol or Alleve but Alleve seems to last all day. I hate taking one but I do most mornings.

tweetypie13 | @tweetypie13 | 4 days ago

In reply to @tuckerp "@abbeyc I am mostly better. I take a daily lisinopril for BP. (10mg). I take Repatha..." + (show)

@tuckerp
Well said….” Right now my right knee has a catch in it but a month ago it was my left shoulder. Who knows. Not sure which one is better….”
Perfect summary for me right now, although I have not had to take any OTC regularly….only on days I walk the golf course and hike . I’m still on Kevzara every 3 wks.

abbeyc | @abbeyc | 4 days ago

In reply to @tuckerp "@abbeyc I am mostly better. I take a daily lisinopril for BP. (10mg). I take Repatha..." + (show)

@tuckerp I have alleve in the house. I’ve been hesitatant to take them due to the intestinal side effects. Why is everything so difficult!
That’s very impressive to hear how physically active you are. It makes me sad that I stopped pickleball 4 years ago. I will always associate pickleball ball with that darn PMR. That’s when and how it all began for me with a mysterious shoulder pain. I dropped out of my pickleball group. A couple weeks later I couldn’t get out of bed. We all know the story. 😞
But I agree it’s important to keep the body moving and build up strength. If I’m not at the gym I’m either taking walks or doing at home yoga/pilates/cardio exercise videos and using my vibration plate.
Let's all just do the best we can and beat this thing

abbeyc | @abbeyc | 4 days ago

In reply to @tweetypie13 "@tuckerp Well said….” Right now my right knee has a catch in it but a month..." + (show)

@tweetypie13 how long have you been off Prednisone?

janetilley | @janetilley | 4 days ago

Yes I have experience the same thing. Pain off and on but not the same as PMR. Re morning stiffness - do leg stretches BEFORE getting out of bed. LEGS not bent in a “V”. Sitting - Stretch forward one leg at a time. HOLD 20 seconds.
Look up other stretches for the part of your body that is sore. Do often during the day. 5-10 minutes at a time. Pay attention to Achilles heel and calf muscles. It works! For pain take Celebrex with stomach protector. Infrequently if you can manage. GOOD LUCK!

tweetypie13 | @tweetypie13 | 4 days ago

In reply to @abbeyc "@tweetypie13 how long have you been off Prednisone?" + (show)

@abbeyc
5 months off prednisone.
Been on Kevzara for 10 months

vbird | @vbird | 4 days ago

I’m in about the same boat. Slow going in the mornings and after sitting. Fatigued more than I was while in the thick of the PMR. I have had some strange symptoms in my hands and feet. I am 73 so part of mine could be age. The other part could be just being tired of trying to keep functioning while not feeling good.

barb26 | @barb26 | 3 days ago

In reply to @abbeyc "@ropnrose my question about going back on Prednisone is .. is that just to feel better..." + (show)

@abbeyc I understood that we take prednisone for inflammation. It does not make PMR go away. That has to wear itself out and the adrenals need to kick back in.

abbeyc | @abbeyc | 3 days ago

In reply to @barb26 "@abbeyc I understood that we take prednisone for inflammation. It does not make PMR go away...." + (show)

@barb26 yes that’s correct.
Although sometimes I wonder if there is also a medical benefit to treating inflammation. Having lingering high inflammation cannot be good for the body.

abbeyc | @abbeyc | 3 days ago

Thank you all for your very helpful comments. I do wonder...are most of you just accepting that we have to live with ongoing pain and leaving it there? or are you like me who continues to find a solution and end all of the pain? assuming it's all postPMR / steroid damage related. (I'm not talking about other ailments that have surfaced like osteorarthritis, etc). I am wondering if I should just throw in the towel and live on pain killers.

Also, many of you commented that you struggle(d) with extreme fatigue when coming off Prednisone. I recommend working with an Endocrinologist once you get to below 5mg. Mine switched me to hydrocortisone. I tapered extremely slow and had very little fatigue. I did have a lot of fatigue early on while I had PMR and at the higher doses each time I tapered down 10% or so.