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freesia
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Joined: 19 June 2010
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Posted: 18 November 2011 at 7:36pm |
That is wonderful news, mrs UK.  You must be so relieved! I hope they get that test resourced so it can be routinely used for everyone. freesia
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Celtic
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Posted: 22 November 2011 at 6:42am |
Hello Freesia
I was just reading an article about tea drinking.....and thought of you!  The article was basically about the merits of green tea versus black tea but a few lines stood out, hence my thoughts of you:
"Be careful if you're anaemic. Tea is generally safe but some compounds (present in all teas) may impair iron absorption, so cut down/out if you have low iron levels!
Do hope all is well with you (and everyone else 'looking in').
In haste,
MrsO(Shirley)
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Pearl
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freesia
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Posted: 23 November 2011 at 7:10pm |
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Shirley, thank you so much for thinking of me! And thanks for the information about teas. I didn't realize that. I will have to be careful. I usually drink herbal teas. Also, I think some supplements that are meant to support the immune system have green tea in them. I'm doing okay--how are you?
My primary care doctor is giving me a break, lol, and I won't see her until January, so I won't find out exactly how my iron is doing until then. I think my tests were looking better so she decided not to check me so frequently. My iron stores were building up, and my hemoglobin was increasing, but slowly. My inflammation (CRP) was down to 8.3 or so.
I'm alternating 5 mg and 5.5 mg a day now, and it seems to be working. Although I am still having stiffness and soreness, I can manage. I wonder why more rheumies don't catch on to the alternate-day dosing? If I hadn't come to this site, I never would have known about it.
Hope you and everyone are doing well !
freesia
Edited by freesia - 23 November 2011 at 7:10pm
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Celtic
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Location: UK
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Posted: 24 November 2011 at 6:18am |
Freesia
Like you, I'm doing ok, thank you - sticking on alternate days of half a mg and zero for a while after experiencing just a little intermittent flicker of a problem in one eye following reaching this level, which could just be a bit of steroid withdrawal (even at this low dose!) but no increased problem PMR-wise (I hope I don't regret saying that!). Also I've been very busy following the setting up of the support group which has involved many hours on the computer, plus I suffer from high occular pressure necessitating eye drops, so any one of these could be the culprit! 
Yes the very slow tapering via half mgs does seem to prove the answer for many people and it seems to be essential on the lower doses, especially below 5mg. I used to take several weeks to taper by half a mg and then stay there for a couple of months, always asking for a blood test if unsure.
So pleased to hear that things are improving for you on all levels - keep it up.
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Pearl
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Celtic
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Posted: 24 November 2011 at 6:20am |
Oh and by the way, Freesia - Happy Thanksgiving Day, and to all our American friends looking in!
Shirley 
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Pearl
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MrsE
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Posted: 24 November 2011 at 7:59am |
And a Happy Thanksgiving to you all from me too! Enjoy your practice for Christmas and don't eat too much  !
Eileen
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Not a Newbie to PMR - just to this community!!! Hi all!
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freesia
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Posted: 26 November 2011 at 9:10am |
Thanks, Celtic and MrsE! Glad you are doing okay on your taper, Celtic. I'm sorry about the eye problem. It sounds like you are aware of what it might be, you're alert to any developments, so it's under control. Reading the computer for long hours can cause eye strain, for sure. I hope it goes away!!! I haven't told my rheumy that I'm alternating doses. I hope that 5/5.5 is not too low. I'd be functioning better at 8 perhaps, but I don't want to start increasing the dose again. Am I correct in thinking that increasing and decreasing all the time with prednisone is where you can get into trouble with more side effects? Or is that a myth? Re Thanksgiving, I am grateful that I didn't stuff myself with food.  I wasn't too hungry so I just didn't go overboard. I've never been one to gain weight over the holidays, until last year when I was grounded, mentally and physically, by PMR. I am determined not to have a repeat of that this year! I don't blame the prednisone....it's the food! Canada has a Thanksgiving but it's in October...do you have anything like this in the U.K.? I hope everyone has a pain-free Christmas, Hanukkah or whatever winter holiday you celebrate! freesia
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Celtic
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Posted: 26 November 2011 at 11:44am |
Hi Freesia
I've always felt that yo-yoing the dose too much can, in fact, aggravate things. So many people reduce too soon and by too much, then increase slightly again when things get uncomfortable, then reduce again before they've really given the reduced dose long enough to take control of the inflammation, and so on. After a flare at 5mg and below necessitating an increase up to 10, I then learned I needed to give my body quite a while to adapt to each reduced dose before slowly tapering to the next dose. In total 3 months to taper and stay on the new dose became the norm for me and proved successful....thus far!  It's important to mention here that when I got back down to 5 from 10, my rheumy kept me at 5 for 5-6 months - it had been the stumbling block previously and with hindsight he was very wise.
It sounds as though you exercised lots of willpower on Thanksgiving - I hope I can be as good over the Christmas period. No we don't have a Thanksgiving Day in the UK - I guess the nearest would be what we know as harvest festival but that doesn't match your Thanksgiving celebrations. Our big one is, of course, Christmas, for which I've made the cake and, most importantly, fed it with some more brandy! Still have the Christmas pud to make! I'm sure I won't have as much willpower as you so I'm frantically trying to lose a couple of pounds now! 
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Pearl
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freesia
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Posted: 27 November 2011 at 2:54pm |
Celtic, it sounds as if I'm in exactly the situation you describe. I hope I haven't made things worse for myself. Another question that keeps rolling around in my mind: I've heard that pain can actually prevent a person from healing because it is stressful in and of itself. Does it work this way with PMR, too? I know that pred doesn't cure the disease, but is it better to take enough so that we have minimal pain and stiffness?  Celtic, I don't know if it was willpower I had on Thanksgiving--honestly, I think I was enjoying being away from home so much, and I wasn't really hungry, so I just nibbled on the food. I think what helps also is that I don't like to get to the point of starvation--I eat a little bit earlier, before the big meal. Then I'm not so inclined to eat too much. My mother's family was English and I love plum pudding with hard sauce! Is that what you are making? I used to buy the Crosse and Blackwell brand here. Is the Christmas Cake like a fruitcake? I'm not familiar that, but mom did usually have a plum pudding, doused with brandy and set on fire! freesia
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Celtic
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Posted: 27 November 2011 at 3:45pm |
Freesia - you have to take sufficient Pred not just to control the pain but to control the underlying inflammation that is causing it, if that makes sense. Pain causes us to tense our bodies therefore causing more stress - I remember well during the early part of my journey with PMR often suddenly noticing that my face felt sort of screwed up and my jaw tense when trying to move around.
Yes Christmas pudding is also known as plum pudding and I do make a "hard sauce" to accompany it - brandy butter. It's very traditional to pour brandy over it and set it alight! How lovely that your Mum kept up the tradition. Some people make a soft sauce - brandy sauce. And yes, you're quite right, the Christmas cake is a fruit cake - it's heavy with all kinds of fruit, candied peel, cherries and nuts. I cover it with marzipan (sometimes I eat more than gets on the cake!  ) followed by white icing. My son doesn't like Christmas cake so I usually make him a chocolate log - does he share it.....no!  (Don't tell him but I usually pinch a slice off the end!  ). Oh, this is making me hungry now and its nearly bedtime, so enough about food!
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Pearl
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