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Has anyone experienced edema in their ankles and feet?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 28 11:23am | Replies (24)Comment receiving replies
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.
Replies to "I have had edema in both legs since I had my first PMR symptoms, 5 and..."
"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.
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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?