1. < Polymyalgia Rheumatica (PMR)

Is anyone else diagnosed with PMR experiencing weakness in their legs?

Posted by aspine @aspine, Nov 6, 2021

I have never noticed a problem with my legs prior to my diagnosis. Twice, I have kneeled down in public places - once in WAlmart - and was unable to get up. Scary!! This has never happened to me in the past. Is it the PMR, or is it prednisone, or is it that I have been misdiagnosed? My PCP is not suggesting a rheumatologist so far, and that alone concerns me.

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lizbethobrien | @lizbethobrien | Aug 14, 2022
In reply to @flymetothemoon "I would suggest seeing a Rheumatologist for PMR with this condition. I do believe long term..." + (show)
@flymetothemoon

I would suggest seeing a Rheumatologist for PMR with this condition. I do believe long term use of Prednisone effects our bones. I developed a stress fracture in my foot while on it just from walking a lot. Also, there could be other contributing factors. Osteoporosis, arthritis etc. A Rheumatologist is best one to handle.

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I see a rheumatologist locally and at Mayo. I am very familiar with prednisone because my daughter who is now 31 was diagnosed with a very rare autoimmune disease when she was 9. She is doing great! Climbs mountains etc where she lives in Colorado. Let’s say I am a patient advocate for others and myself. I am a nutritionist by degree and believe in striving for a clean diet. However, sometimes we have to utilize conventional medicine to help us in managing our health. Prednisone is a very strong medication with multiple side effects which I monitor daily. The best lessonI have learned is to educate myself and to be advocate for myself.

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1 reply
flymetothemoon | @flymetothemoon | Aug 14, 2022
In reply to @lizbethobrien "I see a rheumatologist locally and at Mayo. I am very familiar with prednisone because my..." + (show)
@lizbethobrien

I see a rheumatologist locally and at Mayo. I am very familiar with prednisone because my daughter who is now 31 was diagnosed with a very rare autoimmune disease when she was 9. She is doing great! Climbs mountains etc where she lives in Colorado. Let’s say I am a patient advocate for others and myself. I am a nutritionist by degree and believe in striving for a clean diet. However, sometimes we have to utilize conventional medicine to help us in managing our health. Prednisone is a very strong medication with multiple side effects which I monitor daily. The best lessonI have learned is to educate myself and to be advocate for myself.

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I agree. I try to walk 20 miles a week and ignore the aches and pains. As long as my blood tests stay normal, I am going to stay off Prednisone. If not I will have no choice. I also have had my second Reclast infusion for Osteoporosis, so I have quite a few issues going on, that I am monitoring. Unfortunately, Prednisone does weaken the bones, so exercise is important. Sorry about your daughter and happy she is doing well. It sounds like you have things under control. Feel good.

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1 reply
flymetothemoon | @flymetothemoon | Aug 14, 2022
In reply to @johnbishop "Hi @lizbethobrien, I would like to add my welcome to Connect along with @flymetothemoon, @sharonanng and..." + (show)
@johnbishop

Hi @lizbethobrien, I would like to add my welcome to Connect along with @flymetothemoon, @sharonanng and others. Sorry to hear you joined club PMR. The good news is that there are a lot of us here for any questions you might have from a patient to patient perspective. My primary care doc is part of a local Mayo Family Clinic and like your doc ran the ESR and CRP tests before referring me to a Mayo rheumatologist for the diagnosis. I've had 2 occurrences of PMR, the first when I was 64 back in 2007. I was started on the magic bullet (20 mg prednisone) and within hours I was back to feeling good. I did struggle tapering off of prednisone the first time and it took 3 and half years to get off. One of the main things that helped was a great rheumatologist who had me keep a daily pain log along with the dosage of prednisone and also supported tapering very slowly. He told me not to taper when the pain was too high. For me, that was over a 2 on a scale of 1 to 10.

My second time around with PMR was 6 years after I went into remission. I was able to taper off in a year and half the second time around, mainly because I made some lifestyle changes - eating healthier, less sugar and more exercise.

Has your doctor or rheumatologist suggested any tapering schedule or other suggestions?

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I see my Rheumatologist every 6 weeks, and I have also been on this for 3 years. I tapered from 20 to 2 then back up to 5, now down to 1 for my last week. I also am being treated for Osteoporosis. Type 2 Diabetes, so a lot going on. I'm active and walk a lot and my Endocrinologist also monitoring bones. My husband is an Ophthalmologist and monitors my eyes since they can be a problem in a lot of his patients. No easy for sure. Thank you for welcoming to this site. Important to have people to vent to. Also, in rare cases this condition effects hands, and lucky me. Like they say, what doesn't kill us makes us stronger. Hope you are having a good day.

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1 reply
lawhoeburg | @lawhoeburg | Aug 14, 2022
In reply to @milld835 "Generally yes. But my hips were so bad just 2 weeks ago I couldn't move them...." + (show)
@milld835

Generally yes. But my hips were so bad just 2 weeks ago I couldn't move them. Leg weakness I'd have to say yes. Blood pressure I'm concerned about from the Prednisone. Went to a machine today as no doctor available to check it, and it was elevated to 152/86, but as I sat there and tested it 4 times, it dropped to 136/78 (which isn't bad). Hot flashes and sweats (that's why I checked my BP). I'm hoping for the rheumatology referral soon as the neurologist was arranging that. I am not retaining fluids as nothing is swelling and good urination. Hunger is over the top (trying to eat healthy snacks and no salt). Always drink a lot of water and rarely use salt anyway. I sometimes get this feeling of being "high" and a little wonky. Overall I'm thrilled with the results so far. Sleeping well every night. I wish for your sake you would get your referral soon, weakness when you're not used to it is very concerning and stressful.

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You should be able to go to any fire station and the firemen or medics will take your blood pressure for free. My husband did that for years. They were always very kind and soothing. A pleasant experience and they know what they are doing.

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1 reply
paelwell | @paelwell | Aug 14, 2022
In reply to @flymetothemoon "I agree. I try to walk 20 miles a week and ignore the aches and pains...." + (show)
@flymetothemoon

I agree. I try to walk 20 miles a week and ignore the aches and pains. As long as my blood tests stay normal, I am going to stay off Prednisone. If not I will have no choice. I also have had my second Reclast infusion for Osteoporosis, so I have quite a few issues going on, that I am monitoring. Unfortunately, Prednisone does weaken the bones, so exercise is important. Sorry about your daughter and happy she is doing well. It sounds like you have things under control. Feel good.

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Unfortunately I am un able to walk anything but very short distances and if I exercise too much my inflammation rate increases and I am very sore and tired for the next several days.

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1 reply
sharonanng | @sharonanng | Aug 14, 2022

I find that what seems like weakness in the legs is actually pain in the hip area. It helps me to remember to bend my knees when bending down--really lessens the pain.

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flymetothemoon | @flymetothemoon | Aug 14, 2022
In reply to @paelwell "Unfortunately I am un able to walk anything but very short distances and if I exercise..." + (show)
@paelwell

Unfortunately I am un able to walk anything but very short distances and if I exercise too much my inflammation rate increases and I am very sore and tired for the next several days.

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Sorry to hear that. It is interesting, but when I walk I actually feel better, but as soon as I'm home I'm tired, and if I stay home I sleep a lot. I live in NYC so I try to plan a different route to inspire me, but it's effort to get myself out there. My knees hurt now so it is one doctor appt after another. My husband feels more and more of his patients have this condition, then years ago when he first started practicing. Wondering if it's something in our environment. Who knows.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 14, 2022
In reply to @lawhoeburg "You should be able to go to any fire station and the firemen or medics will..." + (show)
@lawhoeburg

You should be able to go to any fire station and the firemen or medics will take your blood pressure for free. My husband did that for years. They were always very kind and soothing. A pleasant experience and they know what they are doing.

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Welcome @lawhoeburg, That's a good suggestion about going to a fire station n a time of need, especially if there is one close by. Ours is a volunteer fire department and not normally open for business unless it's an emergency call out. They definitely are the best when it comes to helping folks.

Do you mind sharing what brought you to Connect? Were you searching for answer for PMR or other health question?

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2 replies
sharonanng | @sharonanng | Aug 14, 2022
In reply to @flymetothemoon "I see my Rheumatologist every 6 weeks, and I have also been on this for 3..." + (show)
@flymetothemoon

I see my Rheumatologist every 6 weeks, and I have also been on this for 3 years. I tapered from 20 to 2 then back up to 5, now down to 1 for my last week. I also am being treated for Osteoporosis. Type 2 Diabetes, so a lot going on. I'm active and walk a lot and my Endocrinologist also monitoring bones. My husband is an Ophthalmologist and monitors my eyes since they can be a problem in a lot of his patients. No easy for sure. Thank you for welcoming to this site. Important to have people to vent to. Also, in rare cases this condition effects hands, and lucky me. Like they say, what doesn't kill us makes us stronger. Hope you are having a good day.

Jump to this post

I also have neuropathy in hands and feet. My rheumatologist says not PMR. I do not necessarily agree with him. When the dose of prednisone kicks in, hands are better and almost pain free in late afternoon.

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1 reply
flymetothemoon | @flymetothemoon | Aug 14, 2022
In reply to @sharonanng "I also have neuropathy in hands and feet. My rheumatologist says not PMR. I do not..." + (show)
@sharonanng

I also have neuropathy in hands and feet. My rheumatologist says not PMR. I do not necessarily agree with him. When the dose of prednisone kicks in, hands are better and almost pain free in late afternoon.

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Exactly. But now she has agreed, that although not common, there are cases of it in hands and feet. I ordered these cushioned braces to stabilize my wrist and hands at night. It helps a lot.

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