Knee pain and PMR?

@mun68

I know that sciatic pain you are referring to --- it was soooo painful, I thought I would die just from the pain alone.

The sciatic pain was while I was still on Prednisone for PMR. Someone said the pain was piriformis syndrome which was common with PMR. My PCP disputed this and said piriformis syndrome was "not common" with PMR.

My PCP was able to do a complete physical exam and noted that I had lost the reflexes in both legs. He was also concerned that I had foot drop on the right along with generalized leg weakness. I didn't have too much pain at the time because I took 60 mg of Prednisone when the pain was extreme. I actually thought "things were good" and I didn't think anything was that wrong.

My PCP ordered an urgent MRI which showed severe lumbar stenosis. My good feeling soon unraveled when I was referred to an orthopedic surgeon who said I urgently needed a multilevel lumbar fusion.

The orthopedic surgeon was concerned about how much Prednisone I was taking. He didn't think the bone in my spine would be dense enough to hold all the hardware needed to fuse my lumbar spine. He immediately wanted me to get a bone scan to check for osteoporosis. I think the surgeon was stalling for time because he also ordered an EMG and NCS (nerve conduction study) only to "delineate the damage" already done.

This was a distant chapter in my PMR/Prednisone journey. My rheumatologist reviewed the MRI results with me. She said she was happy the pain went away but I shouldn't have taken so much Prednisone.

Just as an update ... I have seen two neurosurgeons since the first episode of radicular leg pain. My lumbar stenosis is still severe. I'm off Prednisone but I still don't have too much pain. I still have lower extremity weakness, foot drop on the right and generalized numbness in my legs and feet. I have leg pain if I am honest about it. I have knee pain but both knees have already been replaced.

I still need a lumbar fusion but I deny pain. My PCP doesn't believe me. I'm on Actemra which keeps PMR in remission and that controls my pain. My PCP says Actemra only controls inflammation and it isn't a pain medication. She issued a rollator to me to "keep me mobile" when I told her that I never fall.

A neurosurgeon is prepared to do a lumbar fusion whenever I'm ready. I don't want to do surgery because I'm afraid of the pain the surgery will cause. My pain level is tolerable but the surgeon said it isn't about the pain anymore.

@dadcue
This sciatica conversation is interesting to me because I have spinal stenosis, arthritis, spondoloslesthesis(sp?), etc in my spine. Before the confirmed PMR diagnosis I was noticing leg pain which I attributed to walking incorrectly when I injured my foot and that my alignment was compromised. So I start on prednisone and my body pain was alleviated but my back pain was not. So not sure if it was due to the PMR or walking incorrectly as they happened concurrently. I had to spend time at the chiropractor and time healing my spinal issue. Seems to be much better now.

@caroljeand

I'm familiar with spondylolisthesis. It is a spinal condition where one vertebra slips forward over the one below it, most commonly in the lower back. Symptoms can range from none to severe, including low back pain, leg pain, numbness, tingling, and muscle tightness in the hamstrings. This is why the surgeon wants to fuse my spine.

I don't think of PMR as an "isolated condition" anymore. I have been diagnosed with multiple autoimmune conditions. I'm not sure how my lumbar spine got so bad but it is called "degenerative." Prednisone relieved whatever back pain I ever had so I suspect it was "inflammatory" in nature. After the damage is done, it doesn't really matter what causes it.

My rheumatologist doesn't refer to any specific diagnosis anymore. The last time I asked ... PMR was my primary diagnosis and Actemra targeted PMR. My rheumatologist has acknowledged that I have a "full range" of rheumatic problems. We don't talk about anything specific anymore other than "systemic inflammation."

Fortunately, Actemra works well for my inflammation and I'm off Prednisone after decades of taking Prednisone. At this stage, except for rapid pain relief, I think prednisone did more harm than good.

After PMR was diagnosed, prednisone never stopped the pain from recurring whenever I tried to tapered off, Prior to being diagnosed with PMR, my ophthalmologist said I was very skilled with tapering off prednisone. My ophthalmologist wasn't treating GCA but something else called uveitis which often caused recurrent flares and could cause vision loss. High doses of Prednisone (60-100 mg) followed by a fast taper always put uveitis back into remission for at least a year or two until it recurred more often.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734

Yes for me. Pain in the back of the knees with knee flexion and aggravated by sitting/inactivity. This developed later in my course with PMR, or maybe it just became more obvious when some of the other pains (hips, shoulders) subsided. When I reported it to my rheumatologist, he thought it was unrelated to the PMR, but I’m not buying it. I did have a Baker’s cyst when I was younger, and this time around I don’t have that “golf ball” swelling in either knee. The inflammation settles in such odd places with PMR, and the medical understanding of the disease seems incomplete.

@leetaanderson I had a Baker's cyst when younger too and had a torn piece of cartilage removed. Just before my pmr diagnosis I had a return Baker's cyst (same knee) and as the cyst was finally draining and getting better I had a really rapid attack of pmr- I absolutely do not know that the two are related but my physio said they do show the same inflammatory markers (but again- so do lots of things I think). Looking back, I think that I had had a couple of mild attacks of pmr earlier in life (I was diagnosed in my 50s for what it's worth) but went for rheumatoid arthritis tests due to this being a common family thing. At the end of the day I just keep trying to manage the pmr symptoms and not aggravate my knee too much. It's been 4 years on prednisone for me and in New Zealand pmr is treated by general practitioners on the whole, so I'm very interested to read what others have to say about the biological treatments etc. and what rheumatologists have to offer.

@katenz
If you are a candidate for a biologic you should pursue it. You have been on prednisone quite awhile.
I already have osteoporosis, high blood sugar, and thinned skin so prednisone does not work for me. I am on Kevzara and tapering off prednisone this month. I am hoping for a successful recovery from PMR with the help of these injections.

@caroljeand Thank you - it is good to hear the experiences of others and I'm going to ask if I can be referred to a rheumatologist and see what they can do because I too think that 4 years is a long time even if it has mostly been 5mg and below- and I've already had cataracts done due to the effects of prednisone which is another common side effect!

My knees were badly affected by PMR before prednisone, making bending the knees to sit and stand up from sitting very painful. At its worst I couldn't lower myself onto the toilet. The pain was in the connective tissues at the back and sides of the knees, not the knee joint itself. It was definitely PMR pain which has gone since being on prednisone.

@mun68
Interesting we both have right knee rather than both knee pain. All my other PMR pain is on both sides of my body at the same time. I will mention this to my rhuem doc on next visit to make sure he knows about this. I appreciate others that have answered here.

@megz same