Pain in hands and feet

It seems that PMR and Prednisone likes to give each of us a personalized set of afflictions and side effects. Although I didn't have it initially, I have dealt with swollen and numb hands and feet for over one year. Two years ago I started at 15mg, had to go as high as 30 mg and am currently at 8 mg. As I got below 10 mg the swelling and numbness finally started to fade away. It's not gone but it's better. Not saying that's what'll happen for you. Everyone is different. Seems like your doctor started you at a low dose of pred and it sure doesn't sound like you are taking enough to handle the pain. We're talking Quality Of Life here, and if your pred dose isn't doing the job it's got to go up.

Once again, it seems like many share some of the problems but not all. Initially my weight held steady but during a couple flares I dropped 15% of my weight over 3 months and have held at that point since. Others gain weight like crazy. All part of the wild world of PMR.

I had fluid retention in the legs by evening when I was on a higher dose. I also had pain in feet and hands. I gained 3 stone in weight but now I'm reducing to 2mgs and have not had much fluid retention for a long time now. I did not have very elevated bloods either but the Pred had a miraculous effect. I also felt exhausted but paced myself and now I am almost back to a normal pace of life and doing most activities. It takes time and you have to rest and pace yourself. I wonder if you are on a high enough dose but you are obviously very slim so perhaps it is the correct amount. Perhaps the initial dose wasn't enough.

I think it is time for you to see a different doctor for a second opinion. You may have the symptoms of PMR and it responds to pred but the excessive weight loss is not usual - much as a lot of us would like it to be! There are other things that cause the same symptoms and they MUST be ruled out before fixing on a diagnosis of atypical PMR. Up to 20% of patients have blood markers in the normal range - but that is a range for a large population of people. You say your levels are raised slightly - they may be raised a lot for you. My normal ESR is low single figures - at 16-18 at one point it was very raised for me but still well "within normal range".

Swollen hands and feet can be something called RS3PE syndrome and it is often found in PMR. But it can be caused by a whole slew of other rheumatic illnesses as well as other more serious things - as can PMR. Google it for a better description.

However - if it really IS PMR then you need the right dose of pred to manage the symptoms. That is all it does, the real illness is still continuing in the background. If you still have pain, you are not on enough pred or the antiinflammatory effect is not lasting the full 24 hours - it varies between 12 and 36 hours so if you are not taking enough and are at the 12 hour end, the pain may well return in the afternoon.

So please do see another doctor - to rule out the other causes and sort out the dose properly if it does turn out to be "just" PMR.

Did you ever get proper pain relief? Your starting dose of 10 mg was rather low as most of us start at about 15 or sometimes a little higher, then start to taper after about a month or so. But please, if you can, do as Eileen suggests and get a second opinion. Best wishes. Do let us know how you get on.

Cyn1965. As you probably know there are almost a dozen symptoms of PMR and it seems we all get a different menu of them. Swelling of the extremities and pitting edema of the ankles and feet are among them. At 60 I thought had every symptom during my first bout with PMR while I went un-diagnosed for eight months; bi-lateral shoulder and arm pain, pain in my back, pain in the back of both legs, anemia, weight loss, severe night sweats, hip pain yet no swelling of my extremities. After treatment and cure (remission in 24 months) 9 years later I suddenly developed swollen ankles and feet with pitting edema which my new MD thought was a reaction to my blood pressure meds. A few months later I developed wrist pain like Carpal Tunnel Syndrome in both wrists along with swelling, soreness and stiffness in my calves. My CRP test revealed my PMR had come back. Yet, this time I had none of the original symptoms. PS when I describe "pain" it is more like a severe muscle soreness like I seriously over-exerted myself at the gym the day before. Take note of Eileen's comment re RS3PE syndrome. I was unaware of this condition until I joined this forum but it fits many of our symptoms. I am in remission once again. Hope you get it all under control real soon .

Regards.

I agree that you are not taking enough pred. I too had swollen, painful fingers, couldn't wear my rings for a few months, painful ankles Ilost 20 lbs before pred and diagnosis

thru loss of appetite and heavy night sweats.. Those are PMR symptoms. You must up your pred dosage.