Hello, I haven't posted in a long time. I've read many articles. I didn't know what DSNS was until I went to the FAQ's and then tapering plans page. Both PMRpro and DorsetLady, and others have tapering plans (thank you PMRpro & DorsetLady). I have bounced around 15 to 5 MG for the past year. I'm currently at 3.5 MG, not comfortable, and should probably go up a few MG. My question is this: I do not experience pain as much as I experience Heavy Legs and Low Energy. When I get up and walk it feels like I have a 2 pound weight around each ankle. Plus I get fatigued just moving my legs. The more I move. The better I feel. If I'm standing and moving around for a hours I feel better. The Heavy Legs and Tiredness is not as great. If I sit down, then 1/2 hour later it seems I'm starting all over again fighting Heavy Legs and Fatigue.
What advice can you give me to defeat this issue?
Or is it something I just have to accept and live with?
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It would be useful to seek the opinion of a neurologist as we can be prone to neuropathy with our condition and its treatment. I have been thinking the same thing lately as I get the heavy legs and burning feet, as well as very itchy palms.
Since 2021 I've tried my own methods to improve and taper, I exercise daily, am on Keto, and have lost 50 pounds, now staying under 170 pounds. I track my food religiously with the "Lose-It" app. Eating around 2,000 calories a day and keeping my carbs under 40 G. Fat under 100 G, and protein over 120 G. In January 2022 I got off Prednisone completely. 5 weeks later my body blew up. My hands were so painful I couldn't us them and had to have cortisone shots at the base of my thumbs, and went back to 15 MG. I've tried to taper 1/2 MG per month and when I get around 5 MG I have to go back up to 10 and start over. {'ve repeated this process many times. I taper immediately upon going up. I had never heard of DSNS until I read the tapering page this week.
When you repeatedly flare at a similar dose it is your body telling you you have arrived at your destination. Whatever some doctors try to tell you, pred cures nothing and is a management strategy to manage the inflammation and relieve the symptoms. As long as the underlying autoimmune cause of the PMR is active, you will need some pred to manage the inflammation being created every morning. You start with a high enough dose to clear things out and then you taper the dose slowly to find the lowest effective dose, the lowest dose that manages the symptoms as well as the starting dose did. YOu will only off pred altogether when the disease activity is in remission. It is not uncommon for patients to get off pred and then the symptoms return a few months later - the disease had not gone away, it was at a very low level of activity, creating a drip of inflammation which, like a tap dripping into a bucket, eventually reaches a level where it overflows.
You rarely need to go back to your highest dose, if you flare at a dose, then you add 5mg for a week or so to clear things out and return to the last dose you were good at. The more you yoyo the harder it gets to taper again so do try to avoid that at all costs.
PMRpro has explained about finding the lowest dose your PMR needs. As you’ve discovered going below that just means trouble -won’t always be like that …but is for you at the moment. So no point in trying to push it.
You are doing a lot of good things-but PMR has its own agenda, and can’t be bullied or cajoled into going into remission any earlier than it wants.
That makes it very frustrating at times, but it’s the nature of the beast….
Not sure if you’ve seen this -but it worth revisiting just to remind you what you are dealing with -
It is almost certainly the low pred dose and your adrenal glands struggling to keep up and produce some top-up cortisol. If it is just that then it should catch up eventaully providing you stick there.
But as DL asks - why have you bounced around between 5 and 15mg for the last year and how did you get to 3.5mg now? One of our mantras is "the lower, the slower" both in terms of size or reduction and frequency. The body doesn't respond immediately to any changes of dose - except big ones up, which you should never need except in a flare.
I have given my history to DL. I had never heard any mention of Adrenal Glands until I went to the page ADRENAL GLANDS by MrsNails today. I have much to learn about adrenal glands and their role in my tapering process. It appears I am being too aggressive in my taper and have to learn to be more patient.
I could have written what you have written about the heavy legs and the fatigue and the benefits of moving around. I have felt terrible for the last 2 or 3 months on 5mg pred all that time. I came to the conclusion that I just have to keep moving without overdoing it. Just gentle fluid movement and no heavy lifting or really strenuous exercise. Pottering in the house or garden suits me best. At my worst, even the swimming that I love wasn't possible, just not enough energy. I've got back into it now. I've reduced the distance that I swim drastically, so that I can do a little on consecutive days and over the last week, I am beginning to think it is helping the fatigue. I also do a little gentle stretching on as many days as I feel up to it. I see that the adrenals etc have already been commented on and that might impact on what you are capable of doing, and your situation may be different to mine, but this is what seems to be helping me atm.
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