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MrsE 
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Joined: 09 July 2010
Location: Italy
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 Posted: 14 September 2011 at 1:47am |
Being tired, the abnormal fatigue that isn't helped by a rest, is part of autoimmune disease - and you would think it would be more obvious when the PMR symptoms aren't being controlled as well as before.
In the Ragnar taper (and other ways of smoothing the path of reduction) the doses vary from day to day to achieve a slightly lower dose averaged over several days. If you have 1mg tabs and can manage to cut them in half you can taper by 1/2mg a day very easily - but if you only have much bigger dose tablets that is obviously more difficult which was the reason Ragnar developed the idea of his reduction plan. Below 10mg a day you need to reduce by not more than 1mg at a time to keep the 10% rule in reduction - at 5mg that becomes 1/2mg and obviously the smaller the dose, the smaller the absolute amount of the reduction needs to be, at 2.5mg a day it's a 1/4mg reduction that is needed. Averaging the doses over a few days allows that small an absolute reduction and it really shouldn't be a problem having, say, 1/2mg differences from one day to another - UNLESS you have got to the dose that, for the present - is the dose you need to control the PMR.
And it also helps when reducing the dose to reduce what you are doing as well for a week or two - MrsUK swears by that! You can't expect your body to keep up much activity and adjust to a smaller dose at the same time.
I see Pearl (Celtic) has just posted whilst I've been writing - she's right, it was her I meant. Reducing every few weeks may work at the higher doses at first - but as you get closer to the dose that is just enough to control the inflammation you need longer and longer at a given dose. Into the bargain, as long as we are on pred we don't ever know if the autoimmune process has died out and there is no longer inflammation being caused. That's why we have to try to reduce and see if it works - if it doesn't, returning quite quickly to the last dose that worked and staying there for a few months allows the disease another chance to go away, which is what we are all hoping for. The smaller the drop the easier this will be and you avoid big ups and downs in dose which aren't good for you plus the difference between a dose that works and one that doesn't is also kept to a minimum.
For example, 10mg a day might work well but 5mg doesn't - but 6mg a day might also be enough and that is a much lower dose than 10 so much better for you - do you see what I'm trying to say???
Does this all make sense - even over the internet 
Eileen
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Not a Newbie to PMR - just to this community!!! Hi all!
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mrs UK
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Joined: 07 June 2008
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Posted: 14 September 2011 at 4:13am |
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Freesia
Out of the left field, have you had your Vit D level checked. If you are deficient in Vit D, you get aches and pains which are just like PMR pains. It needs to be done. It should have been done at the outset as an exclusion test. Also lack of Vit D causes tiredness as well.
You can read about Vit D and lack of on the web and also in the North East Newsletter (its on the website) dated Nov 2010.
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Mrs UK
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freesia
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Posted: 14 September 2011 at 8:23am |
Thanks for all your helpful words! Everything was really clear. I do understand what you are saying (even over the internet  ) ! I think the prednisone is affecting my brain. Going back to luckycanuk--I wonder if you meant you stayed on a given dose for a long time and THEN used the Ragnar method to taper? Sounds like it! Thanks for your patience.  Pearl, I don't know what is making me so tired. Maybe I go to bed too early -- I know I wake up in the middle of the night and lose track of how much time I'm awake then. Maybe it's just not a restful sleep. I'm taking iron supplements every day and my hematocrit etc, are improving, albeit slowly. I do notice if I stay up a few hours past my regular bedtime, I pay for it the next day, and have to nap for a few hours to get back on track. MrsE, thanks for explaining why Ragnar came up with his reduction program, and also about why we reduce in small increments. It all makes sense! I'm kind of concerned about not keeping the inflammation under control because it can also cause heart problems. hi mrs UK, my primary care doctor had me boost my vitamin D intake because my levels were quite low. This was about 20 months or more ago, around the time I was diagnosed. Now my Vit. D is up where it should be. In fact, for awhile I took 5,000 IU daily (per rheumy's instructions) but I neglected to take into account that my calcium supplements also had Vit D in them, so I really overdid it and this led to levels that were too high. So I cut way back and now they are fine. I'm re-thinking my bike exercise. Maybe it does cause inflammation. I used to wonder about that. Walking always suited me better, anyhow. Trouble is, I don't live in an area that is really great for walking so I'll have to drive somewhere and walk there. Thanks everyone for your great ideas! I will definitely have to print up this entire conversation. freesia
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freesia
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Posted: 14 September 2011 at 8:45am |
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I forgot to mention, I feel noticeably better from taking 5.5 mg yesterday...just half a mg more than I'd been taking for the past week and a half.
freesia
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Celtic
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Posted: 14 September 2011 at 10:19am |
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Freesia - just a little add-on here following your last post. When you reduce the dose, you may need longer than a week and a half to ensure that the increased pain/stiffness isn't just due to steroid withdrawal. Unless the pain is really bad, then I feel you need to give it a couple of weeks at least. The important thing now is that you're already feeling better from increasing to 5.5 yesterday - as we've said before: amazing what just half a mg can do! Hope you continue to feel better.
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Pearl
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MrsE
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Posted: 14 September 2011 at 10:45am |
I saw my rheumy here in Italy this morning. he had just been to a meeting of all German-speaking rheumys in Munich where a PMR/GCA session was packed out for a presentation of the current thinking. Reductions should be as slow as possible - and a dose of anything from 5 to 10 mg/day is seen as a perfectly acceptable low dose as a longterm maintenance dose. And that may last for several years - or even longer. They are not concerned if you get down to that realm and have to stay there for a long time because reducing any further leads to a return of symptoms.
They are looking at quality of life - PMR and its pain and handicap is a given. At lower doses like this the problems with steroids may or may not occur - they deal with them if they appear. You might spend the next 10 years unable to do much because you are at too low a steroid dose - or you can enjoy those years at a slightly higher dose. Or you might go into remission and be able to come off steroids for at least some time. All are acceptable in their eyes.
If you feel good, or at least better, at 5.5 or even 6mg - stick there and LIVE BETTER!!!
Eileen
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Not a Newbie to PMR - just to this community!!! Hi all!
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RickF
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Joined: 23 March 2010
Location: S. Florida, USA
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Posted: 14 September 2011 at 2:44pm |
Eileen, Thanks for that. I've copied and printed your post out and will take a copy to my Rheumy. I hope he feels the same way.  I wonder if this "current thinking" from German-speaking Rheumys will be published anywhere?
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64 y.o. male Dx PMR Mar, 2010.
Started on 20mg Pred; currently on 10 mg.
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luckycauk
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Posted: 14 September 2011 at 4:11pm |
Would an example be helpful? What I was told to do initially was to reduce prednisone by one mg per month. I used the slow taper each month when I discovered it on this website. My body really likes that. Now the example. If I reduced from 9mg to 8mg and my monthly sed rate was above 20 I would increase my prednisone to 10 mg for a month. Then try 9 again. Up and down with dosage amounts like a yo-yo. BUT when I stayed for one additional month at 9 mg, my sed rate always came into the normal range 20 and under. Hope this adds clarity rather than confusion.
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luckycanuk
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freesia
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Posted: 14 September 2011 at 5:42pm |
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Pearl, I'd forgotten about the possibility of steroid withdrawal pain vs. actual PMR pain when tapering! Thank you so much for reminding me. I guess if I get my ESR and CRP and they look pretty good, it means I was having withdrawal pain ? Maybe I just should have stuck with the taper--how long should I tough it out before going to a higher dose? I guess there's almost no avoiding a "nosedive" sometimes. I dread having a flare so much!
MrsE, thanks for that information re dosage. It sure seems to coincide with what my primary care doctor says...but why not the rheumy? Maybe I'll follow RickF's lead and make a copy for my rheumy to see, except I'm not that daring. I'm thrilled to hear that the convention was packed with doctors just to hear about PMR and GCA ! They really are recognizing the problem of quality of life that these diseases present.
luckycanuk, yes, that example was helpful! Interesting--so you more or less just ignored the SED rate even if it was high, and maintained your dose of 9 mg...interesting! I'm assuming that you were feeling okay, functioning alright, even with the SED rate being a little high, or else you wouldn't have stayed at 9 mg (you would have gone back to 10)? Just wondering. Thanks !
freesia
Edited by freesia - 14 September 2011 at 5:43pm
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Celtic
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Location: UK
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Posted: 15 September 2011 at 4:47am |
Freesia, yes definitely if your ESR and CRP results are normal and you are one of those people, like me, for whom increased pain = increased inflammatory markers then you have a good guide as to what is going on, always remembering, however, that if you are harbouring a virus or infection of some sort then those markers may also increase.
As for how long you should tough out the pain before increasing the dose, that will vary from person to person but in my experience if the pain continued to worsen after a couple of weeks, then I used to ask for my blood tests and be guided by those. There was only one occasion when my legs appeared to be worsening that I had the test and it came back normal so I stuck with it and the pain disappeared proving that steroid withdrawal had been the culprit.
I relied very heavily on those blood tests, as I wasn't one of the few lucky people who seem to become pain-free down the doses. I used to have the blood tests done prior to each reduction and I often wonder if I had been one of the sufferers whose inflammatory markers are not affected by PMR/GCA whether I would ever have reduced - I found those blood tests a Godsend.
Do try not to worry so much about the possibility of having a flare - it really isn't that bad! I used to feel a bit down and frustrated for a couple of days following a flare and having to increase the dose back up but the relief from the pain soon got my spirits back up - sort of 'dust yourself down and start all over again'.  |
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Pearl
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