Polymyalgia and knee pain

[JA200]

Is there anyone else who has a diagnosis of Polymyalgia Rheumatica who only has pain and stiffness in the legs, especially the knees and no other symptoms?

[PMRpro Ambassador]

I would think that few rheumatologists would consider pain and stiffness in legs/knees only a criterion for PMR. At least, not unless the hip girdle is involved. There are several criteria suggested and usually they look for at least 3 to be fulfilled. Of course, it may start in the lower or upper body and later spread to the rest of the trunk.

[Kaaswinkel]

I have had PMR for 4 years now. Initially the upper body was involved (although it started and lasted in the hip joints for a short time, a few days only) from the time I tried to diminish from 3.5 to 3 mg prednisone my knees and sometimes also the rest of the legs are most "uncomfortable" stiffish and often painful in the night. Back to 3.5 mg. The upper body symptoms have improved. A while ago I posted on this forum and there were quite a lot of others who had predominantly knee and leg "problems" not so much upper body. Because I have had PMR upper body I recognise the type of pain and know it is PMR pain. If you never have had upper body pain it is hard to decide about the origin of your pain. I suppose it is trial and error: if you respond well to a course of steroids then most likely the origin of your symptoms is PMR. If the steroids don t touch yr pain it is more likely to have another origin (although, of course, occasionally... some people with PMR do not respond favorably to steroids! but that does nt happen that much, I understand...).

By the way, do you also not have other auto immune symptoms like tiredness??

[nuigini]

Having had PMR for over 7 years, my legs have been a constant issue and were an big issue for the six years prior to diagnosis. When originally diagnosed, after 20 and 25 mg didn't relieve the massive PMR pain in every muscle of my body and flaming inflammation markers, I was given 40 mg. Within hours, I could move my arms again and I could run up and down stairs like I hadn't done in years! After being instructed to reduce at far too fast a rate a massive flare at 25 mg two months later, I had to return to 40 mg for four weeks to get relief. Sadly, I never got my legs back. They have remained with me to this day.

PMRpro recently used the terms "Frankenstein legs" or "concrete jeans", which are very apt descriptions in my case.

Almost two years ago I was diagnosed with osteoarthritis and age related degenerative issues in the lumbar spine, which may be part of the problem. Exercises to strengthen muscles in that area have certainly improved things, however, not entirely.

I also have minor osteoarthritis in my knees which flares from time to time. A neoprene knee support and using a can for a time usually settles things down.

A PMR flare for me typically appears in my upper torso with increasing pain in triceps, neck and back muscles being the major indicators.

[coxs]

My consultant has given me steroids after 2 months ill health with a suspected PMR diagnosis High blood CPR 279 showing infection/ inflammation and dreadful fatigue

Steroids fir last 10 days have made me feel lot better

Want to get off but reducing from 15 to 20 then 5 over 6 weeks before seeing rheumatologist again in early July

[PMRpro Ambassador in reply to coxs]

If you have PMR this isn't a case of take a short course of pred and that's the job done and dusted. Only 1 in 5 patients is able to stop pred in a year, one in 3 by 2 years. Which means most of us need it long term.

Did the rheumy tell you to reduce like that? Does he want to see if it all comes back when you stop the pred?

[Ertert222]

Yes! Just woke up one morning and excruciating pain in both knee joints and thighs & calf’s.Starts as soon as I get out of bed and lasts about a half hour. Legs sore rest of day not bad.

Had blood tests, x rays, cat scan nothing showed up. They though I might have the giant cell thing and did a temporal biopsy and it was ok.

Put on prednisone 60 mg. Was gone in 2 days. Started reducing dosage down to 5 mg and it came back but not as bad. Working the dose up a bit.

However I had/have none of the symptoms most mentioned.

No head, jaw, shoulder, hip or anything new above the waist.

The only other thing that occurred before it started my jaw did “lock up”. Couldn’t open my mouth much. Could talk and that was about it. Lasted about a week. No pain or discomfort, just couldn’t open.

Only other symptoms were night sweating, sensitive to cold, and increased pulse rate (80’s-90’s)

[PMRpro Ambassador in reply to Ertert222]

First - a temporal biopsy DOESN'T rule out GCA, it can only rule it definitely IN if it is positive. If you have PMR - 60mg would definitely make that disappear! But the symptoms will return at a dose of pred above 5mg if the underlying cause of the PMR is still active and it can remain active for anything from 1 year up - only 1 in 5 get off pred in a year.

[Ertert222 in reply to PMRpro]

Thanks for the reply. This new to me but I not totally convinced I have this.I have “zero” symptoms above the waist.

Prett much everything I see and hear there are usually aches & pains relating to jaw, scalp, neck, shoulders, hips.

My blood work showed significant inflammation.

Some readings 2 & 3 times the high range listed for the test.

The weirdest thing to me is it starts off as soon as I get out of bed and stand up.

Lasts around 1/2 hour then sore legs.

Same every day.

[PMRpro Ambassador in reply to Ertert222]

Could still be PMR - PMR involves the shoulder and hip girdles - either or both so below waist symptoms can be found in PMR. But it doesn't sound at all typical (that confuses doctors no end!)

You have inflammation - has anyone looked at an enzyme, creatine kinase (CK)?

[Ertert222 in reply to PMRpro]

Yes. It was 30. Range stated “less than 200”.One of the first tests when this started.

[PMRpro Ambassador in reply to Ertert222]

Excellent - someone on the ball.

[winfong]

Knees and hips for me

[Constance13]

I wish!!

[lynnhanham24]

I was diagnosed with pollymyalgia in my hips and my legs are very painful I try and go for little walk every day