Good Days... Bad days...
Posted , 6 users are following.
I'm new at this PMR thing. Diagnosed in March. Have had days where I feel "almost" normal. Then get kicked back to feeling like a train wreck.
Now I have this swollen vein at the base of my right thumb where the pulse is. Looks like a small marble and is sensitive to touch. I have neck/clavicle/shoulder movement pain that gets really bad on the bad days. Is this the PMR or something else?
Im taking only 6MG Pred a day which I know is quite low, I feel it is a trade-off to have some bad -day PMR pain and discomfort in exchange for the lesser Pred side effects (which have been severe for me in the past when used to treat bad allergies).
I hate this. I just want to feel like "me" again.
I'm so sorry for all of you who are struggling with this. If I'm feeling this miserable, I can't imagine what you are going through.
blessings to each and every one.
3 likes, 28 replies
constance.de MaggiGrace
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Very unusual starting dose of pred - the lowest I've heard of! After all this time I'm still on 7 mgs.
All the best. Constance
Guest MaggiGrace
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MrsO-UK_Surrey MaggiGrace
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Were you someone who had raised ESR and CRP blood test markers at diagnosis? If so, these tests should be repeated to see whether they are improving, especially as it doesn't sound from what you say that your symptoms are improving.
Do your "really bad days" follow a day when you have felt a bit better so have overdone things? If that is the case, then you need to pace yourself and have plenty of rest if you wish to get better, especially as you aren't taking sufficient Prednisolone to reduce the inflammation.
MaggiGrace MrsO-UK_Surrey
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The diagnosis remains PMR due to the dramatic relief response I had to the Pred (initially received two long-acting injections, one in my shoulder and one in my knee. Within 24-36 hours I was pain-free. Over the next 2-3 weeks as the injections wore off I began taking oral Pred. Because of my previous reaction (very very severe depression) I am trying to "get by" at the very lowest dose possible. So at 6MG I am just getting by and I realize this is a risk to ongoing inflammation and other side effects, but the Pred side effects for me are a known issue. I cannot risk the severe depression again as it is a far greater risk to me personally.
I have an appointment with rheumy on Friday. I will continue to hope and pray for a "magic wand" that will resolve this disorder for each and every one.
Peace to you.
MaggiGrace
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MrsO-UK_Surrey MaggiGrace
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MaggiGrace MrsO-UK_Surrey
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EileenH MaggiGrace
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MaggiGrace EileenH
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linda82701_USA MaggiGrace
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linda82701_USA MaggiGrace
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MaggiGrace linda82701_USA
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I'm just over the bridge in WA State. Maybe the RAIN is our PMR problem!
Seriously, for me (a PMR short-timer compared to others here) there is no rhyme or reason. My symptoms actually seem worse the more I am "still". I try not to overdo anything exercise wise, but I do try to walk every day (though I'm not always successful).
Hope you're soon better every day. From your neighbor to the North.
Guest linda82701_USA
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Guest MaggiGrace
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EileenH linda82701_USA
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The underlying autoimmune disorder that causes the damage and the symptoms we call PMR is still there - and will remain there until it decides to go into remission. There is nothing we can do to speed that up - we have to manage life until it happens. The pred helps but we must do something too. Fatigue is a big part of almost all autoimmune disease - it isn't clear why but it is. Maybe it is simply our bodies telling us to rest - and by resting when you need to you will achieve far more in the day.
The worst thing to do in PMR is sustained or repetitive actions - both tire the muscles and don't allow them to recover. Such a task split into a few minutes at a time with rests for the muscles involved inbetween will allow you to achieve far more overall. Or doing something one day and then having a day rest to recover helps. A nap in the afternoon will allow you to do something later in the day that would have been impossible if you hadn't had that rest. Being "still" is bad because it allows something called myogelosis to occur - the muscles stiffen up and make it difficult to get moving again. It is a listed symptom of PMR.
So lots of short bursts are better than one long session - but not too "bursty"! Keep it all low key!
I often suggest googling "the spoon theory by Christina Miseriando" - someone has written a thread about it on here recently. And another good read for managing autoimmune disorders is Despite Lupus by Sara Gorman - especially her advice about resting and achieving more.
And I'm sorry - whoever it was said she'd been told by 2 docs she MUST walk a mile a day - I don't know what world they live in but it is certainly NOT the PMR/GCA world I have lived in for the last 10 years. With or without pred, the pain and other problems made that impossible for a very long time. For over a year I could barely walk the 300 yards from my flat to the village, even with crutches. My bone density has not changed - there are many factors involved in bone density and if you can't walk a mile you can't walk a mile. But it is wrong for a doctor to make you feel inadequate or risking your health if you can't. Realism is important.
constance.de EileenH
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Guest EileenH
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I have to pay very close attention to any pain. I am a new patient and have only had one taper under my new rheumy. For those who have dealt with this for ten years and constantly have pain, I think about you constantly.
EileenH Guest
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And no - I don't constantly have pain now. I'm on 4mg, it looks as if I will be there for a while but that's fine, I feel well. I had 5 years with no pred - uncomfortable but not hellish. Then it became really bad but was still a mystery to my GP. 15mg pred achieved a miracle in 6 hours but much later I had a major flare and severe bursitis. The fatigue went on for a long time though and the fear of getting stranded was always there. Now I can walk fairly well - but a few hours of wandering round town leaves me tired the next day.
linda82701_USA MaggiGrace
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Hello, neighbor! I have only been diagnosed since January so am a short timer, too. Just takes time to realize the complexities of this disease and prednisone. But as time passes and with the insight of everyone on this website, I am learning and accepting what is going on with me.
linda82701_USA EileenH
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EileenH linda82701_USA
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If you have PMR, have only had it since January and your rheumy is pushing you to get off pred - get off your rheumy!!!! You need to find one who knows how to deal with PMR. The use of pred in PMR is at the least likely to be a taper over a couple of years. Maybe longer. Any rheumy who is trying to force you to stop pred when you have PMR doesn't know their rheumatology and you need one who does. In the UK an educated PCP would be able to manage you - is that an option?
linda82701_USA EileenH
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EileenH linda82701_USA
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The biggest mistake though is to try to reduce too fast or in too big steps. At least he is telling you to do 2.5mg steps - but from 15mg down ask if you can do it 1mg at a time.
If you haven't already done so, follow this link to another thread on this forum
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
There are links to sites where you will find lots of info about PMR and GCA - realistic info from other people with PMR, one is a forum but with a lot of sections with that sort of info. In the replies bit is a description of a slow way to reduce which avoids discomfort due to steroid withdrawal and has worked well for a lot of people to identify the right dose for them to be on long term if necessary - often as little as 5mg or less.
Did my doctor telll me what to expect? Neither my original GP nor the rheumy I saw got it right - I told the GP, the rheumy wanted it to be anything but PMR and wouldn't let me stay on pred despite a textbook response in 6 hours. Another GP in the practice was happy to agree it was PMR - and my present one is fantastic but doesn't bother telling me anything except SLOW DOWN THE REDUCTION! I can't go any slower...
linda82701_USA EileenH
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EileenH linda82701_USA
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Yes, often patients have the signs of PMR for some time before it is diagnosed, thinking as you did, it's part of getting older and I'll have to put up with it like our grandparents almost certainly did.
You rested a lot yesterday - and are having a good day today. That is also very common - rest and pacing yourself are very important parts of managing the illness. And if you have localised problems they will make you think the entire thing is bad even though it is just one part - like an ice cream stain makes a slightly worn t-shirt need washing!
And no - only people who have had PMR know how limiting it can be. Like depression it doesn't show on the outside.
linda82701_USA EileenH
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