PMR Journey with New Aches and Pains

[Vawils]

Diagnosed with PMR back in 2014 and been dealing with it since then - 69yo male. Over the past two years been successfully using the very slow reduction method. My US doctors were unfamiliar with it but have been interested in my improvement using this method. Things were going real well until about early March. I was down to 2mg prednisone per day and starting to split doses to get down to 1 mg. I was feeling pretty good and looking forward to getting off prednisone for good this year.

However my aches and pains have returned since about early May and been quite troublesome. I am uncertain that they are all due to PMR or that something else is going on. I have the traditional PMR shoulder stiffness and buttocks/trunk soreness and stiffness in the am and pm which has increasd but more recently my calve muscles (most notable just the left) and sometimes ankles and feet are in pain. I have never had pain in these areas with the PMR, hence my uncertainty as to PMR. At times the calf pain a burning tight sensation has been severe enough to keep me awake at night and the pain in my feet is ongoing at times affecting my gait.

Have any of you experienced pain in the calves/feet/ankles or know what else may be causing the discomfort i am experiencing? It is a new pain area that i had not previously experienced and I suspect something else may be causing.

I have increased prednisone back to 3mg and found some improvement but the new and old aches are still there in the background/foreground. I also take tylenol most nights as well.

Appreciate any feedback or comments.

[PMRpro Ambassador]

You have to remember that your are never reducing relentlessly to zero: you are titrating the dose to find the lowest effective dose for YOU. Prof Dasgupta in Southend told us last summer that he often keeps patients at 2-3mg long term as it reduces the risk of relapse.

Over the years I have come across quite a few patients who were fine at as little as 1mg, even 1/2mg but they couldn't manage at zero pred without the symptoms resurfacing aftr a couple of months, one the tiny drip, drip, drip, of inflammation had filled the bucket and overflowed. If you catch it quickly you won't have to go back up far.

However - one of the long term effects of vasculitis is an increased risk of developing peripheral arterial disease and what you are describing could be signs that that is happening. Does the calf pain when walking start after a short distance and then go away when you stop walking? When you have the night time pain, does it improve if you hang your leg over the side of the bed? The foot pain could also be due to poor blood flow to your feet.

[Vawils in reply to PMRpro]

Thanks much for the detailed reply and information. I was hoping to get off steroids this year but don't think it is going to happen. My rheumatologist is happy that I am at a dose lower than 5 and doesn't seem concerned about long time on steroids (7+ yrs now) I do think that calf pain is something other than PMR for sure and possibly what you suggest. Often worse when I go to bed, have noticed it is better for a time when I get up and move around. Also worse if I have been standing for a time, and also my feet. I will consult further with rheumatologist. Thanks again.

[PMRpro Ambassador in reply to Vawils]

When you get the pain in bed - try hanging the leg out over the edge and see if that helps. It could be a clue if it does,

[HeronNS]

Can't really be helpful as I've been dealing with a similar situation, really since the beginning of the year. I'm coming to the conclusion that the reason it's been so difficult to pin down the cause and find an appropriate dose of pred is because there *is* more than one thing going on, in my case some osteoarthritis along with PMR affecting my shoulders. Not sure what the answer is as there is really nothing for OA except painkillers which interfere with cartilage regeneration, and pred isn't good for OA either - but necessary for the PMR.😕

Pain in leg muscles might be alleviated by taking some magnesium or enjoying an Epsom salts soak,

[piglette]

You could try increasing your dose by say 5mg for a week or so and if things improve it is probably the PMR. If they don’t improve you could look for some other reason.

[enan-illuc]

I have had two Doctors, both Rheumatolgists, tell me what PMRpro posted. I have had GCA and PMR since 2016 and am taking 1 to 2 mg of Prednisone daily depending on how I feel. That is a low dose and I am told not to worry about it, that a GCA flare up is far worse.

I also have the same pains you describe but my Doctors told me to exercise and that does help, a lot! I am seventy-four years old and plan on taking a very low dose of Prednisone for a very long time. Good luck and keep a positive attitude, it does help.

[Vawils in reply to enan-illuc]

Thanks for the reply and sharing your thoughts. Yes my rheumatologists seems to be happy as long as I stay under 5mg/day. I do try to keep exercising, walking/hiking daily and try to maintain a positive outlook. Will consult with rheumatologists further about the calf pain.