Are painful swollen hands and fingers a PMR flare?

Posted by deborahinmaine @deborahinmaine, May 15 11:56am

I got off prednisone for PMR after almost 3 years in April. In February I had woken with swollen painful hands and fingers. Because of how I sleep it was diagnosed unseen as carpal tunnel. Finally saw my rheumatologist and she thinks it could be a PMR flare,didn’t look like carpal tunnel. That makes sense to me but she has put me back on only 3mg. of prednisone. I have no strength in my hands and can’t make a fist. Very limited in what I’m able to do.
When first diagnosed with PMR and in terrible pain this same rheumatologist started me on 5mg. of prednisone which did nothing.
Finall got up to 20mg. And got some relief.
Has anyone else had issues with your hands during or after being on prednisone for PMR? I also just found out there is osteoarthritis in my hands.
Thanks!

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

Thx for the rather detailed information. I agree. This is complicated. 3 mgs pred daily was nicely calming PMR symptoms in shoulders and hips. Suddenly the hands and wrists are painful and swollen. Hard to say if it's related to PMR or something else

REPLY
@dadcue

"Your immune system begins to react to something - a virus or allergen or bacteria or such and something triggers that immune process to dial it up - and it doesn't get a signal to stop. So now your immune process is in overdrive and the mechanism to slow it down is stuck."

I like this explanation! It sounds like reactive arthritis to me.

Endogenous cortisol from the adrenals is supposed to regulate inflammation ... not prednisone. Maybe the adrenals get overwhelmed by the excess amount of inflammation when the immune process goes into overdrive. Maybe the adrenals can't produce enough cortisol relative to the amount of inflammation. Prednisone works because it floods our body with exogenous synthetic cortisol.

Too much endogenous cortisol and exogenous synthetic cortisol causes an oversupply of corticosteroid. This causes a problem because too much corticosteroid is just as bad as not enough. If we persist with taking prednisone the adrenals take a holiday. The adrenals shut down the production of cortisol in an attempt to restore the proper amount corticosteroid.

The whole system that regulates inflammation (HPA axis) gets screwed up the longer we take prednisone. It isn't just inflammation that is regulated by the HPA axis --there are other things that become unregulated. My blood pressure and cholesterol levels went through the roof for example.

When the adrenals don't function, a major malfunction ensues.

Jump to this post

Thats very insightful. I tend to think of
Reactive Arthritis>>RA>> PMR as a continuity of overlapping conditions with distinctions that are more than just severity or duration. But we don’t understand the ‘why’ that’s in play. Why do we get one condition versus another and what are the differences in triggers.
It interests me because my son got Reactive Arthritis following knee surgery. My Rheumy in NYC was torn whether I had PMR or sero negative RA. She had a hunch and gave me Humira in her office -and five days later i began to improve. But if she had loaded me up on prednisone I would also have improved.
So the ABC’s of this triad of conditions really is fascinating to me.

REPLY
@dadcue

"Your immune system begins to react to something - a virus or allergen or bacteria or such and something triggers that immune process to dial it up - and it doesn't get a signal to stop. So now your immune process is in overdrive and the mechanism to slow it down is stuck."

I like this explanation! It sounds like reactive arthritis to me.

Endogenous cortisol from the adrenals is supposed to regulate inflammation ... not prednisone. Maybe the adrenals get overwhelmed by the excess amount of inflammation when the immune process goes into overdrive. Maybe the adrenals can't produce enough cortisol relative to the amount of inflammation. Prednisone works because it floods our body with exogenous synthetic cortisol.

Too much endogenous cortisol and exogenous synthetic cortisol causes an oversupply of corticosteroid. This causes a problem because too much corticosteroid is just as bad as not enough. If we persist with taking prednisone the adrenals take a holiday. The adrenals shut down the production of cortisol in an attempt to restore the proper amount corticosteroid.

The whole system that regulates inflammation (HPA axis) gets screwed up the longer we take prednisone. It isn't just inflammation that is regulated by the HPA axis --there are other things that become unregulated. My blood pressure and cholesterol levels went through the roof for example.

When the adrenals don't function, a major malfunction ensues.

Jump to this post

art43, dadcue. You guys have got this. Thank you.

REPLY
@pb50

Thats very insightful. I tend to think of
Reactive Arthritis>>RA>> PMR as a continuity of overlapping conditions with distinctions that are more than just severity or duration. But we don’t understand the ‘why’ that’s in play. Why do we get one condition versus another and what are the differences in triggers.
It interests me because my son got Reactive Arthritis following knee surgery. My Rheumy in NYC was torn whether I had PMR or sero negative RA. She had a hunch and gave me Humira in her office -and five days later i began to improve. But if she had loaded me up on prednisone I would also have improved.
So the ABC’s of this triad of conditions really is fascinating to me.

Jump to this post

"So the ABC’s of this triad of conditions really is fascinating to me."

It isn't just these three conditions.... it is all autoimmune conditions. I think they all have more in common than what makes them different. Years ago, conditions like this fell under the broad heading of rheumatism. Now there are more than 200 distinct rheumatic diseases. I don't think they are that distinct. This is especially true when you can have more than one condition going on. My rheumatologist said I had a full range of things going on.

The common denominator is inflammation. I think it boils down to what is the best way to treat autoimmune inflammation. I'm not sure prednisone is the best way. All the inflammation pathways are fascinating to me. My rheumatologist says there aren't single individual inflammation pathways. It is more like a network of pathways with cross talk, upstream and downstream regulation and all sorts of things happening.

I'm just happy that Actemra works well for me. My last infusion was 7 weeks ago because of extensive travel. My rheumatologist knew it was going to be a long time between infusions so he sent some prednisone with me in case I needed it. I didn't need the prednisone but now I'm wondering if I still need Actemra.

REPLY
@dadcue

"So the ABC’s of this triad of conditions really is fascinating to me."

It isn't just these three conditions.... it is all autoimmune conditions. I think they all have more in common than what makes them different. Years ago, conditions like this fell under the broad heading of rheumatism. Now there are more than 200 distinct rheumatic diseases. I don't think they are that distinct. This is especially true when you can have more than one condition going on. My rheumatologist said I had a full range of things going on.

The common denominator is inflammation. I think it boils down to what is the best way to treat autoimmune inflammation. I'm not sure prednisone is the best way. All the inflammation pathways are fascinating to me. My rheumatologist says there aren't single individual inflammation pathways. It is more like a network of pathways with cross talk, upstream and downstream regulation and all sorts of things happening.

I'm just happy that Actemra works well for me. My last infusion was 7 weeks ago because of extensive travel. My rheumatologist knew it was going to be a long time between infusions so he sent some prednisone with me in case I needed it. I didn't need the prednisone but now I'm wondering if I still need Actemra.

Jump to this post

I will tell you what my Rheumy told me in December when i had had a long stretch of no flares, and only a low hum baseline of pain. I questioned whether we should dial back frequency of infusions or dial down dosage per kg. He said lets bring this up in March. When we’ve spent two years of tweaking to get here, I don’t really want to change anything.

REPLY
@dadcue

"Your immune system begins to react to something - a virus or allergen or bacteria or such and something triggers that immune process to dial it up - and it doesn't get a signal to stop. So now your immune process is in overdrive and the mechanism to slow it down is stuck."

I like this explanation! It sounds like reactive arthritis to me.

Endogenous cortisol from the adrenals is supposed to regulate inflammation ... not prednisone. Maybe the adrenals get overwhelmed by the excess amount of inflammation when the immune process goes into overdrive. Maybe the adrenals can't produce enough cortisol relative to the amount of inflammation. Prednisone works because it floods our body with exogenous synthetic cortisol.

Too much endogenous cortisol and exogenous synthetic cortisol causes an oversupply of corticosteroid. This causes a problem because too much corticosteroid is just as bad as not enough. If we persist with taking prednisone the adrenals take a holiday. The adrenals shut down the production of cortisol in an attempt to restore the proper amount corticosteroid.

The whole system that regulates inflammation (HPA axis) gets screwed up the longer we take prednisone. It isn't just inflammation that is regulated by the HPA axis --there are other things that become unregulated. My blood pressure and cholesterol levels went through the roof for example.

When the adrenals don't function, a major malfunction ensues.

Jump to this post

Wish I knew about the connection of the adrenal glands and cortisol levels, etc. I might have had a totally different approach to what I was doing and taking.

REPLY

My rheumatologist sends a very detailed letter to my PCP after every visit. My hand problem is " MCP arthropathy with chodrocalcinosis/pseudorheumatoid pattern". Also have probable pmr and the achilles tendonitis is possible spondyloarthropathy.
In the beginning I only had hip and shoulder complaints. Had bloodwork today. CRP only 1.6 which is the first normal in months. I'm supposed to stay on 5 mg prednisone til Aug appt. Would really like to try and taper but I better listen to what I was told.

REPLY
@pb50

I will tell you what my Rheumy told me in December when i had had a long stretch of no flares, and only a low hum baseline of pain. I questioned whether we should dial back frequency of infusions or dial down dosage per kg. He said lets bring this up in March. When we’ve spent two years of tweaking to get here, I don’t really want to change anything.

Jump to this post

Because of traveling, I had my Actemra infusion yesterday after 7 weeks instead of 4 weeks. My CRP and ESR were checked prior to my Actemra infusion. While my pain wasn't that significant, my inflammatory markers were elevated. My inflammatory markers went from "negligible" to "significantly elevated" according to my rheumatologist --- the first increase in a couple of years.

I was never sure why we were still checking my inflammatory markers, Supposedly they aren't reliable when a person is on Actemra. My rheumatologist said my inflammation markers are still an indicator when something isn't right or when Actemra isn't working for some reason.

When I asked if I still needed Actemra ... my rheumatologist said based on my inflammation markers .... I still need Actemra. My rheumatologist asked me why I would want to stop Actemra. I didn't have any reason to stop Actemra other than to see what might happen. My rheumatologist said he could probably predict what would happen if we stopped Actemra.

REPLY
@dadcue

Because of traveling, I had my Actemra infusion yesterday after 7 weeks instead of 4 weeks. My CRP and ESR were checked prior to my Actemra infusion. While my pain wasn't that significant, my inflammatory markers were elevated. My inflammatory markers went from "negligible" to "significantly elevated" according to my rheumatologist --- the first increase in a couple of years.

I was never sure why we were still checking my inflammatory markers, Supposedly they aren't reliable when a person is on Actemra. My rheumatologist said my inflammation markers are still an indicator when something isn't right or when Actemra isn't working for some reason.

When I asked if I still needed Actemra ... my rheumatologist said based on my inflammation markers .... I still need Actemra. My rheumatologist asked me why I would want to stop Actemra. I didn't have any reason to stop Actemra other than to see what might happen. My rheumatologist said he could probably predict what would happen if we stopped Actemra.

Jump to this post

Similar to my discussion with the Rheumy. I only get blood work with him twice a year now. Seems like medicare has delivered some kind of inspiration to limit testing of all kinds. He has fought them on medication approvals before so he’s not just after the gold star. But my values have been pretty steady. He will pull them in a flare but otherwise only what some other doc hasn't pulled in the last year.

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A very good article in UpToDate.com stated that hands and wrists are often involved, suddenly and dramatically. After a year that happened to me, both hands swollen and painful, overnight. Carpal tunnel also happens with this, they stated.
I went to my orthopedist and got a shot in one worn out thumb joint that was affecting the wrist and it has eliminated the carpal tunnel symptoms. It was like 10mg of steroid and it seems to have helped me taper from 5 to 4 mg prednisone.

REPLY
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