I was diagnosed with GCA about 5 years ago treated by my GP. I recently saw a rheumatologist because we moved away from my GP and I wanted another opinion. He now diagnosed PMR with a plan to get off Prednisone. A few days ago I went from 7 down to 6mg. And as a previous poster suggested, I felt like I have been run over by a bus!!! I also have spinal stenosis and some arthritis in my hips so I am not sure where/what is causing the achiness & weakness in my legs.
I am fairly new to this forum and have learned a great deal already. Have not seen any discussion on compression sox, does anyone use them. I feel like they help me.
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Kcartney103
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I was on pred 2+ years with my GCA diagnosis and over 2 years with the PMR. I realize after joining this forum that is not overly long. I believe he is trying to get me to the lowest dose without suffering symptoms. I have an appt with "my rheumy" next week.
Oh good, he is being sort of reasonable then. Not like some who force people to too low a dose.
Cool about the socks, good tip... but aren't you concerned about that taper down plan? If you've just been diagnosed with PMR isn't 7 to 6 a big jump? Especially if you feel like crap!
If you have PMR the plan shouldn't be to get you off pred but rather to get you to the lowest dose which controls the symptoms until PMR burns out in its own good time. I understand it's sometimes difficult to distinguish between the different sources of pain, but if you are finding increased pain and fatigue there's little doubt in my mind you need a little more pred to control those symptoms, and a very slow taper thereafter, as you are ready for it. We all need a lot of time to adapt to new doses at the lower levels.
How would your old GP have managed how you feel today?
Hi Kcartneyand welcome to the forum, if we haven't already. It sounds like you have learned its worth already. I am one of those stuck at 7 mgs. It is a tricky stage because you are asking your Adrenal Glands to produce the Cortisol you need after a long rest. I feel sick and ill if I try 6 mgs. Even on 7 mgs I feel sick and tired in the evening. I tried 6 mgs this morning, keeping back 1 mg for the evening and only lasted until 2 pm. My next try is going to be 6.5. I have been here, unsupervised for several months. I really want to get to 5 mgs. I’d promised myself a rest there. I wonder if that’s all I am absorbing sometimes. I have also noticed the return of arthritic pains, neck, back, knees, fingers and heels. The end result, is as you say, like you’ve been run over by a bus. All I can say is resist efforts to make you reduce faster than your body can handle. It will just end up sending you backwards. I hope your Rheumatologist turns out to be an ally in all this.
Just noticed this, SJ. I've managed to get down to 7mg too, and experience all the same sorts of symptoms as you, including intermittent nausea, insomnia and the return of arthritis pain. I have nothing wise to say, but do extend large quantities of fellow feeling.
One good thing is that my blood sugar levels are becoming easier to control, but darned if there are any other obvious advantages, so far. I'm going to stay at this level for a while - not sure about expecting to 'feel better', though. When I do go down, it won't be by more than 0.5mg, and very, very slowly.
Am following your progress with great interest. Role model! Wishing you well . . .
Today I feel terrific but I have had two days of 8 mgs. I don’t think this would have happened if I hadn’t dsns half way to 6 mgs. This has to be as precise as watch making.
"He now diagnosed PMR with a plan to get off Prednisone"
He did did he? Well, unfortunately, what he says isn't usually what PMR allows - you will get off pred when the PMR has gone into remission. Then and only then. And providing that your adrenal function is returning as well.
Dropping fron 7 to 6 "overnight" is too fast - 1/2mg at a time at this stage might work without too much payback though.
Hi my mom started getting edema in her legs and we first used a foam triangle leg lifter, and that helped the edema really quickly. But then she fractured some vertebra and couldn't lay on her back so the edema came back really bad. The doctor suggested she get her legs wrapped at the physical therapist, but we couldn't get in for a week. So I thought I might be able to do it myself and read about the compression socks and yes they helped the edema. The only problem is she can't get them on herself. She has two different types, one that is 20-30 compression hose that have open toe area the other is like knee socks and 10-15 compression, but they are still hard to get on. So far so good.
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Newly diagnosed with GCA
First Post on PMR/GCA
I'm not the only person to feel like this!!
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