I have tapered down to 1 mg Prednisone over three years (from 15mg). I have the same weird symptoms that I've always had. If I squat, my legs feel an extreme fatigue/deadness. I can't raise my arms for more than 15-20 seconds without them feeling an extreme fatigue/pain/deadness.
Does anyone else have such symptoms? A new rheumatologist told me "I believe you," when I asked about this. I had a feeling by the way she said it that she didn't believe it. I am on Actemra and I asked her if I should feel a boost when I get the infusions. She seemed confused and could not answer the question.
She is an assistant to my rheumatologist.
But mainly I want to know if anyone else has the leg and arm symptoms I have. And also, if any doc has recognized this as something real? Thanks for any comments.
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Greytree
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Is that a Physician Assistant? Or a junior medical colleague in the office? There is an enormous difference.
Why would you expect to feel a boost when getting the infusion? I can't really speak to the infusions - they aren't approved for GCA so most people are on the injections which are a much lower dose at a time and I can't say I feel any boost.
If it were just arms, I would wonder if you have a subclavian artery problem but the fact the problem is bilateral complicates that too.
Have these symptoms been a constant since you started pred? Were they part of your clinical presentation pre-pred? DId they improve - even slightly - on 15mg?
I think she is a PA. I don't know what to expect - if anything when I get an infusion. I have no idea what the Actemra infusion actually does. The symptoms have been a constant, I believe, before I even started taking prednisone. I have meatloaf for a memory and do not know. I think everything might have been better on 15 mg. I wish I had kept a journal through it all.
In that case "She seemed confused and could not answer the question." was because her training didn't include those sort of details and I personally would be wanting someone who knows a bit more. There is a role for PAs - who start with a biomedical degree or the like and do a 3 year training. Hardly an equivalent to a doctor.
The Actemra infusion puts a substance into your body that occupies the receptors on the surface of cells that an inflammatory substance called IL-6 needs to attach to to become active and create inflammation. Because they can't get attached to the receptor they just stay in your blood and are excreted without being able to make any inflammation.
Unlike pred, I don't find that Actemra has any effect I can feel. I know some people have found they feel much more energy and physically much better. But it varies from person to person.
I can imagine the symptoms were there pre-pred - they are fairly typical of PMR. But I AM surprised that they didn't improve with pred and even more so with Actemra because both should have improved PMR symptoms. But you need a qualified rheumy for that sort of opinion. Not a PA.
I really don't know, but could your muscle symptoms be due to 'steroid myopathy', after 3 years of prednisone? Is that something to ask your doctor or a physiotherapist for assessment?
I have PMR & GCA-LVV, which caused claudication in my legs. I was diagnosed by PET-CT scan.
GreytreeI was diagnosed with fibromyalgia as I tapered from polymyalgia. My rheumatigist told me that it is not unusual for patients to have both. He prescribed Lyrica for the leg pain that I was experiencing and it helped a lot. Perhaps you could ask your rheumatologist about this.
Except it isn't unusual for a doctor to decide it is fibro when actually it is PMR pain that isn't being managed by a dose that is now too low!! Patients do have both - but it isn't that common, nor is it that common for PMR to suddenly turn into fibro. Obviously yours is if Lyrica worked but that is not that common.
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Discharged by NHS rheumatologist
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