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Knee pain and PMR?
I was diagnosed with PMR the end of October 2024 and have been on prednisone ever since and tapering. Right now I just increased from
8 mg to 9 mg (sometimes accompanying with Tylenol arthritis tablets) with pain typically shoulders and hips but it’s been somewhat manageable. My knees have been pretty painful (only after my diagnosis) mostly in the morning and if I sit for too long (1/2 hour or longer). Getting up from a sitting position is rough. My rheumatologist feels it’s not PMR related. I will make an appointment with my orthopedic to further check it out.
Does anyone else experience pain in their knees (mostly the back) and do you think it’s part of PMR? She also would like me to go on leflunomide, an immunosuppressant which is very scary to me that I’m avoiding. I believe besides being on leflunomide, I still have to stay on prednisone until I wean off of it. I live in the north east and the flu, rsv, etc right now is rampant and, in my mind, that puts a halt on my immune system leaving me susceptible to any one of those viruses (and cancer). I also read that it has a slow half life that could take 2 years to leave my system.
I just think that if I’m functioning, even with pain, I should stay the course on prednisone for now because prednisone is not a cure, but a med to reduce inflammation? So confused.
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@megz
Isn't it amazing how many of these autoimmune conditions have many of the same symptoms. I was originally diagnosed with reactive arthritis and it felt basically the same as PMR too. Reactive arthritis was diagnosed when I was 32 so I was too young for PMR back then.
PMR was diagnosed when I was 52 so I was barely old enough for PMR. My rheumatologist reassured me that I also had PMR in addition to reactive arthritis because of a long history of flares of uveitis. I still haven't figured out why some autoimumune disorders like to attack the eyes too.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6160350/
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When you toss in trigeminal neuralgia with all of that facial pain ... I have no idea why GCA wasn't suspected. I couldn't chew anything when trigeminal neuralgia was acting up.
Trigeminal neuralgia is often diagnosed incorrectly. It can be confused with dental problems, headache syndromes, temporal arteritis, sinusitis and tumors of the brain or the face.
https://www.ninds.nih.gov/health-information/disorders/trigeminal-neuralgia
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I don't see how anyone can be positive of having any diagnosis but inflammation seems to be the root cause of many disorders.
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2 Reactions@megz Yes.
I’ll be paying close attention to your experience(s).
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1 Reaction@dadcue Yes! Good point.
I have had pain behind my knees for 5 years. It’s getting worse to where I have difficulty walking. I also have hip, back, and shoulder pain. I have a diagnosis of PMR. No doctor has heard of pain behind the knees with this, but I’m here to tell you it is real.
Hello @turleyl, Welcome to Connect. Sorry to hear you haven't had much help from your doctors to address the pain behind your knees. Mayo Clinic has some information on Baker cyst which can cause pain behind the knee but I don't think that's the only cause for this type of pain - https://www.mayoclinic.org/diseases-conditions/bakers-cyst/symptoms-causes/syc-20369950.
Have you considered seeking help from a rheumatologist or other specialist to try and determine the cause of the pain behind your knees?
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1 ReactionHi,
I was diagnosed with PMR after Covid vaccine. It’s been about 4 years now and I have no pain behind my knee as of this time. I did get GCA and the doctor put me on 60 mg of prednisone. I did experience pain behind knee and had to use crutches as I could not walk on that leg. It was water retention built up from the high dose of prednisone. It went away after my prednisone dose was being tapered down. One thing I might add is the doctor prescribed me Rinvoq for my GCA as it is a prescription for GCA. After 5 months on it I was still in pain from my PMR as it does NOT address PMR. Wrong medication. I am now back on prednisone and so far I find that’s the only thing that makes me feel better regarding my PMR.
Can you feel any thing behind your knee? Take care. It’s a challenge for sure.
It’s been a long time since diagnosed. Prednisone for 8 months and weened off it and during that time I had X-rays, ultrasounds and MRIs of shoulders, hips, knees. After all that a new doc said knees aren’t associated with PMR and I’m feeling better so maybe it wasn’t that. In any case, I now take daily (2) 200 mg ibuprofen after breakfast and plenty of water. I’m no doctor but I wonder if it had anything to do with Covid.
@debbiebas216
I had two doctors confirm my PMR was from Covid vaccine and two doctors said they can’t confirm nor deny it was from Covid vaccine.
Glad you’re feeling better.
@tweet
Isn't tocilizumab/actemra an option for GCA that is sometimes used along with low dose prednisone for those with PMR too? It might be worth discussing with your doctor.
@kjoed53 yes. The doctor is working on getting me the actemra. Waiting on insurance. But I won’t be using prednisone with it. It’s a new Dr and the other Dr should not describe me rinvoq as it’s not for PMR. Wasted insurance money @ 5,700 for rinvoq that didn’t do anything except Made me feel worse with side effects.