Has anyone experienced edema in their ankles and feet? I

Hello @robgone, Welcome to Connect. I've had PMR flare ups twice but it's now in remission. I've also been diagnosed with lymphedema in my legs (mostly the right leg) but it's not associated with my PMR as far as I know. From what I've read your experience is not uncommon.

"Some patients develop swelling or fluid retention (oedema) of the hands, wrists, ankles and top of the feet."
-- https://www.vasculitis.org.uk/about-vasculitis/polymyalgia-rheumatica

8 months seems like a long time to deal with PMR symptoms with only using Advil intermittently for pain.
Have you started any treatment for PMR other than trying to control the pain using Advil? Have you seen a rheumatologist?

Definitely get the pain in the calf checked, especially with the new fluid retention. That's how my thrombosis started a month ago, with what felt like a sore muscle in the right calf. Within a couple of days the pain was much worse and I could hardly walk. An ultrasound showed a large DVT clot and I went straight onto blood thinners, with endone needed for the pain.

Inflammation on its own or with prednisone can bring on deep vein thrombosis. It may not be what you have, but you should get it checked. Generally for fluid retention, the advice is to drink extra water, keep salt intake low, and elevate feet above the heart as much as you can during the day.

Thank you very much for your reply and concern. I had two sonograms done with two weeks in between and both came out negative for DVT or any blood vessel problems. My vascular doctor could not give me any cause or remedy for the edema. Luckily the pain in my calf has not gotten worse in a months time.

Thanks very much for your reply and your concern. Yes, I have seen a rheumatologist who said the course of treatment is prednisone for one year or possibly more. I did not want to go on prednisone because of its effects on your bones and kidneys at a minimum. I’ve been trying acupuncture and massage therapy in the past two months with not much relief. I now have much more experienced acupuncturist that says she can eliminate the pathogen that is causing my problems, hopefully within afford of five week time span. If that doesn’t work, I guess I will have to give and take the prednisone.

Years ago I had symptoms of PMR, though my rheumatologist said I was too young. If not for that, she would have diagnosed me with it. The symptoms in my shoulders, back and legs eventually subsided. About the same time, i got edema in my feet, ankles and calves a lot. I asked my PC and Endo about it multiple times. They were perplexed and told me to wear support hose! I didn’t find support hose very attractive, so I didn’t, but the edema gradually subsided. I haven’t had it in a long time. It’s still a mystery. I know it can be uncomfortable and annoying.

I have had edema in both legs since I had my first PMR symptoms, 5 and a half years ago. I get lymphatic massages for the problem. I am now at every other week. I have gone every week for years when needed. I even receive compression treatments from time to time during the massage sessions.
My massage therapist told me that my lymph nodes initially had a hard dried pea or BB pellet type feeling in them - after 5 years that mysteriously disappeared. That was last month! The edema is not a lot better, but it is more predictable. I do believe the lymphatic massages have helped.
You need to have your PCP keep an eye on your kidney function as long as you have edema as well as keeping an eye on you blood pressure. I also insisted on a vasculitis blood test since my legs had a burning pain, all was well. The burning pain disappeared about the same time that the BB like feel in my lymph nodes disappeared. That was 90 days ago.
Please go after your pains one at a time and don't assume they are inter-related. This approach has worked for me. Your journey is unique, but this site provides endless support.

I super appreciate your reply and your detailed feedback. As you said, every journey is unique, but ours have some striking similarities. Did you start taking prednisone when you first got the PMR? And, are you still on it?

Thank you very very much for your reply and great supportive information. Did you take the recommended prednisone therapy for your PMR and, if so, how did it work out?

I resisted prednisone for several years until I had Covid and that shot my inflammatory markers way up. I simply could/would not deal with that symptom again.

I started at 5mg, then went 10mg within the first 10 days. Stayed there for one month, dropped to 7.5mg for one month, then to 5mg. That is my Rheumy's preferred plan. As I started dropping from 5mg I designed my own titration plan. Rheumy was not thrilled but agreed to let me try it. I agreed to go back to 5mg if I had a flare and contact her office. I was able to shave off about 5 weeks to a 4 month process by using my plan. It was not easy to manage and I had to keep notes on my calendar daily to stay on track. I would not recommend it in general, but it did work for me. Total time on prednisone was about 6 months.

Every doctor, including my endocrinologist all said 10mg is a small dosage. It did however have side effects, albeit a small dosage. To get 90-95% of my life back prednisone was worth it.

"Please go after your pains one at a time and don't assume they are inter-related. This approach has worked for me. Your journey is unique, but this site provides endless support."
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It wasn't until I tackled my problems one at a time that I successfully tapered off prednisone. There were many problems to confront so it took me a long time.

First, I decided to do work on my knees. Knee replacements were good for a 10 mg reduction in my prednisone dose.

Next --- even though it wasn't my intent to confront trigeminal neuralgia .... it was getting refractory and something needed to be done. Not long after my knee replacements, I was having Microvascular Decompression (MVD) surgery for trigeminal neuralgia. That was good for another 10 mg reduction in my Prednisone dose.

After MVD surgery, I had pain in my buttocks that someone said was piriformis syndrome and that was surely related to PMR. However, piriformis syndrome is not very common. Scientists believe that piriformis syndrome causes only about 0.3% to 6% of lower back pain. The spine surgeon laughed when he heard me mention piriformis syndrome and said, "No ... you have severe spinal stenosis and the nerve roots exiting your spine are being crushed." I elected to increase my prednisone to 60 mg and I was granted a reprieve from excruciating sciatic pain and a lumbar fusion.

I don't recall exactly what happened next but adrenal insufficiency from long term prednisone use was my focus. The very same person who hyped up piriformis syndrome being related to PMR said Prednisone for the rest of my life would be my best option. Trying a biologic with all the scary serious side effects would be far worse than the "manageable" side effects caused by Prednisone.

I tried the biologic anyway and I was finally able to get off Prednisone. I eventually recovered from adrenal insufficiency. I don't seem to have any serious side effects from the biologic which I have been on for 5 years. I think PMR might be in remission.

The severe back pain along with flares of some other autoimmune problems occurred while I have been on the biologic for PMR. Those symptoms were recognizable and I knew they weren't a PMR flare. I took some Prednisone again on a short term basis and prednisone was only a bridge to some other interventions.

At least I didn't need to take Prednisone on a long term basis for things which could easily be confused for a PMR flare.