What is going on?!
Posted , 14 users are following.
Has anyone had this problem: 2 years of PMR taking prednisone, at year and a half I'd gotten down to 12mg when I got a flare up that has grown no matter my pred. dose, it seems. At 18mg my SED rate was 53 and I had lots of pain. The dr had me go up to 20mg and take another blood test, still 53 in pain. Now I'm starting a new pill, something for arthritis or cancer to take each day at low dose. Why did the pred stop working for me? I hate this pain.
0 likes, 55 replies
DebbieHurts
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EileenH DebbieHurts
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I suppose it depends what you mean by "dangerous" - I have never had a raised sed rate at all, zilch, firmly in single figures. The sed rate isn't dangerous in itself - it is just a sign that there is something going on. It can shoot up with a cold, chest infection, inflammation of many sorts, in a person who mounts the response. You could have a high level with a simple cold, or I will have a low level with something really nasty, like certain sorts of cancer. That's why when someone appears with PMR symptoms and a high sed rate they should be investigated fairly thoroughly.
There are a lot of overlaps between PMR and fibromyalgia criteria - maybe your fibro is having a flare AND you have bursitis or myofascial pain problems as well - neither of which will respond as well to oral pred as just PMR.
Azathioprine is also used for RA - some people don't respond to MTX, it sounds as if you didn't, and aza is often the 2nd line approach. The same applies - it may work, it may not. Unfortunately there is no way you can know in advance what will work for this person. All of them take a bit of time to have an effect unfortunately.
linda17563 EileenH
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Another point you raised to another post made me smile....a relative of mine has just suggested I go to rehab!...because my "tolerance" level isn`t working right with steroids!!....I don`t really have the patience and energy to explain.... I put it down to ignorance!!
Onwards and upwards, spring is coming....the sun is out here, hope it is where you are Eileen...Thanks again for all info...
EileenH linda17563
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In the last 3 months we have had almost uninterrupted sunshine! We had a couple of days of snow followed by a bit of rain a couple of weeks ago and then the temperatures shot down to minus almost in double figures C at night, it's been above zero for the first time in the daytime the last 2 days. We have the odd cloud today but it is glorious - and we are back to the situation we had before xmas where it was degrees warmer up the mountain at 2000m than down here in the valley
linda17563 EileenH
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I always like your posts, because I then think of those wonderful dolomites...I think they call it mindfullness....everthing has a title these days!
EileenH linda17563
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Mindfullness - yes. I think our generation do it anyway - appreciating what you have isn't it?
linda17563 EileenH
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EileenH linda17563
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linda17563 EileenH
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Silver49 linda17563
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linda17563 Silver49
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Silver49 linda17563
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EileenH Silver49
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I discovered when the girls were little that getting up and being exposed to the 3 of them (them plus dad) really didn't make for a good day. So he fed them breakfast (all laid out the night before, even he could find the fridge, as was their snack for school) and they could get dressed anyway. Kindergarten was next door so it wasn't too long before they could get there themselves. The school bus went from the same place. Sorted.
When he worked he'd be away for meetings or doing experiments. No longer - and boy, do I miss that...
constance.de EileenH
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Oregonjohn-UK linda17563
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Juno-Irl-Dub constance.de
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linda17563 Oregonjohn-UK
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Silver49 EileenH
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EileenH constance.de
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So we took one of their houses and money to the balance.
snapperblue linda17563
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As Kim Wiliams said "For better or worse, but not for lunch." She advised each member of a retired couple to leave the house for a good part of every day, doing separate things. Not only will he not be there, looking over your shoulder and trying to improve things you have done perfectly well for decades, but you'll both have something to talk about in the evening.