Symptoms after you stop prednisone

Welcome @ejhagerman, I think it can sometimes be difficult to tell whether or not your PMR is really in remission even with normal blood markers. I didn't have any swelling with my hand joints but did have some pain when my PMR was active. Others have mentioned hand swelling and pain and might have some thoughts or suggestions to share. There are a few discussions that you might want to scan through where others have shared their experience:

-- Are painful swollen hands and fingers a PMR flare?: https://connect.mayoclinic.org/discussion/are-painful-swollen-hands-and-fingers-a-pmr-flare/
-- PMR with normal blood markers: https://connect.mayoclinic.org/discussion/pmr-with-normal-blood-markers/
-- PMR Remission: https://connect.mayoclinic.org/discussion/pmr-remission/

Have you discussed the new hand swelling and pain with your doctor or rheumatologist?

I am trying to make a tight fist with my right hand and I can’t. This started about 6 weeks ago after being off prednisone and Kevzara since February. Stiff right shoulder and can’t get my class ring on my right hand. Using Tylenol 500 and Volteran on the hand.
Good Luck

Hello!
Can I ask you while you were tapering if you had discomfort in your shoulders in the morning or were you completely symptom-free? I am tapering very slowly and am at 7 mg. I always have a little discomfort in the morning. Not sure if that is normal. Or if I’m supposed to be completely symptom-free before I lower the dose, I’m going to talk to my doctor but just wanted your experience. Thank you!

Welcome @hiking2552, I always had a little aching or discomfort when I got up in the morning while tapering and before taking my daily dose. We are each a little different but I kept a daily log and if my pain was above a 1 or 2 level either delayed my taper for a few days or increased half of the previous taper down so as not to go all the way to the previous dose.

Do you keep a daily log or journal?

Making a tight fist every morning brings back memories for me . I did this so many times. Sometimes I was only partially awake. Making a fist was a good indicator of how active PMR was and how soon I would need to take prednisone.

I'm not taking Prednisone anymore. I do a monthly Actemra infusion instead. Actemra works for an entire month but I went 7 weeks between my last 2 infusions. I noticed having more difficulty making a tight fist. My inflammation markers were checked before my last infusion and they were elevated. My rheumatologist said I need the infusion every 4 weeks.

Mike; on a scale of 1-10 how are you doing currently? This stiffness is a pain (no pun intended) but overall better than being on prednisone.
john

The hand pain doesn't fit the classical pain pattern of PMR but many of us have it. Some have said it came on before the PMR really hit, some during the PMR journey while on Prednisone and now you have it after finishing Prednisone. The Doctors don't appear to have an answer apart from the fact that it's 'related' to PMR. The diagnostic imaging doesn't seem to give any clear answers. In my case, I had no hand problems before PMR, the hand pain came on a few months after starting Prednisone and didn't respond to Prednisone in the way that PMR pain did, it was in both hands and has become much worse in the Left hand over 10 months to the point where range of movement is now very restricted, constant swelling and pain. It feels different to PMR !!!! I have seen several mentions of pseudogout (calcium deposits in the joints of the hands), there was an interesting presentation on the use of AI in diagnosis at the 2024 Rheumatology conference. I would love to have an answer and know what to do to help myself. Considering a specialist hand therapist at the moment to minimise loss of function, thankful that it's not my right hand that is so dysfunctional.

Yes I keep a journal.
Seems like everyone’s experience is different.
Thanks for your input!

Hello,

It’s very confusing isn’t it? First, you won’t be symptom free for some time after going off prednisone, nor during tapering. However, the symptoms are totally different to full on PMR. Prednisone plays havoc with your body. I developed a frozen shoulder after going off it and now, 7 months later it is almost back to normal. I have a little morning stiffness so I stretch in bed before moving. Every week sees some minute improvement. I found during the last 7 months that I could have bad days and good days but the bad days are getting further apart. Mainly if I overdo it. I also developed some stiffness in three upper fingers but there are bumps so it is osteoarthritis and may have been hastened by prednisone. I have a friend with trigger finger so that’s a different thing altogether but may have been hastened by prednisone as well. All the best with this frustrating journey. My comment is not to rely on prednisone if you don’t have full on PMR as it will prolong use of it and lead to even more permanent body damage - as my doctor carefully explained to me.

Thank-you for asking ... I'm doing well.

I'm still a chronic rheumatology patient that is now being treated with Actemra. I would say I'm definitely better overall and getting better compared to when I was on Prednisone. I'm still being treated. On my list of medical problems it says "long term current use of Actemra (tocilizumab)" instead of prednisone.

Nothing for pain is listed on my medication list. My rheumatologist usually asks me if I need anything for pain and has told me Actemra is not a pain medication. Apparently Actemra is specifically for inflammation and not for pain.

My 1-10 pain scale is more like a volume knob. A 10 is max volume and too loud. A 0 is no volume and I can't hear anything.

A comfortable volume can be anywhere in the 3 to 7 range depending on how focused I am. There is nothing that sounds too loud to me When I'm more focused on something it might seem to be a bit louder. Generally it is about a "5" in the middle of the comfortable range.

I sleep well most nights, There nothing that keeps me awake or wakes me up too early.

I still have an active prescription for prednisone "as needed." My rheumatologist is aware of the problems I have. I don't want to be diagnosed with anything else. I'm okay with what I have.

At my last rheumatology visit we discussed the interval between my Actemra. My rhematologist said 7 weeks between infusions was too long.

As I was leaving my rheumatologist reminded me to take some Prednisone if I needed it. I don't think I need prednisone.