| Author |
 Topic Search  Topic Options
|
freesia 
Senior Member
Joined: 19 June 2010
Online Status: Offline
Posts: 426
|
 Quote  Reply
 Posted: 12 September 2011 at 8:51am |
Oh, okay--I'm glad I asked!  It seems like a good method and I wish the rheumies would catch on ! freesia
|
 |
MrsE
Senior Member
Joined: 09 July 2010
Location: Italy
Online Status: Offline
Posts: 370
|
Quote Reply
Posted: 12 September 2011 at 10:29am |
But do remember that you are looking for the lowest dose you are well on - not to get off steroids altogether immediately by tapering steadily and irrevocably to zero. The pred manages the symptoms - it doesn't work starting at a low dose and going up which is why you start higher and go lower. It hasn't cured the PMR - the higher doses knocked the inflammation causing the symptoms on the head - now you need the dose that stops it resurfacing. That is commonly around the 5 to 7 mg mark. My symptoms resurfaced at about 8mg a day - half a mg down and they started to come back. I persisted with trying to reduce and had a proper flare - in truth, twice, once last summer and once this and never being absolutely happy in between. This time I went back to 15mg/day (every day, not alternate day doses) and am now back to 10mg and feel pretty good. The rheumy here in Italy also seems to feel that 10 or just below is a fair enough dose and not too much to worry about. So 5mg seems pretty good to me.
ESR and CRP - many docs feel ESR is so non-specific (i.e. goes up at the drop of a hat and for so many different things) it is a waste of time and money to keep testing it. CRP is felt to be more sensitive.
However - I haven't read it yet, but I got a link to an article about there being genetic link to CRP being low whatever is going on in the way of inflamamtion in the body. So it's not always reliable either! And that is presumably why about a fifth of us never have raised values!
Eileen
|
|
Not a Newbie to PMR - just to this community!!! Hi all!
|
|
Celtic
Senior Member
Joined: 25 June 2009
Location: UK
Online Status: Offline
Posts: 201
|
Quote Reply
Posted: 12 September 2011 at 3:50pm |
Luckycauk
"Oddly, I am beginning to have some fears about being off prednisone".
I do so empathise with your fears: I have taken my first day at zero today and it felt very strange not popping that little half a pill this morning and to be honest just a little bit scary removing what seems to have been a 'prop' for the last few years, especially when many medics are of the opinion that sufferers of GCA should stay on a low dose for life.
I took about 7 weeks to do the slow taper from 1 to half a mg and then stayed there for 2 months and this has proved successful for me.
I will probably do the half a mg for the next 6 days and then try another zero on the 7th day, followed by 5 days at half a mg and zero on the 6th etc (if all goes to plan  ).
My ESR and CRP are both normal and they have always been an excellent guide for me: increased PMR pain has equalled increased blood test results.
I have today had good news that the osteopenia of my spine (steroid induced on the very high 40mg dose at the outset) hasn't worsened into osteoporosis since the last DEXA scan two years ago and my hips are still of normal bone density. I'm not sure whether to attribute this good news to my diet, my couple of months of Nordic Walking or Tai Chi over the last few years.....or sheer good luck. However, the latest edition of Osteoporosis News does carry a recommendation for both Nordic Walking and Tai Chi to keep the bones healthy.
On a slightly different subject, I read a very interesting tip about water a couple of days ago. Apparently it is advisable to drink plenty of water to avoid the build up of lactic acid in our muscles which can cause pain and inflammation - advice well worth following to us PMR sufferers, I feel.
Good luck as your approach zero and also to everyone else on their PMR journey. 
|
|
Pearl
|
|
freesia
Senior Member
Joined: 19 June 2010
Online Status: Offline
Posts: 426
|
Quote Reply
Posted: 12 September 2011 at 7:49pm |
MrsE, that is exactly what my primary care doctor said about SED rate (ESR)--it can go up and down for no apparent reason. My rheumy tests only my CRP now--it does seem to coincide with how I feel. I'm glad you got back down to 10 mg  . That is wonderful news! I honestly felt more functional at 8 or 9 mg than I do at 5 mg, which makes me wonder if I'm doing the right thing by staying at 5. I'm very stiff in the morning and stay that way until noon or later, it all depends on how PMR decides to behave that day!  By evening I feel almost normal. I know I'm not having a flare, though, so that is good. My pc doctor also said as you do, that 10 mg is not considered a high dose. I still feel confounded by this disease but I guess I'll figure it out as I go along. I just keep reading and re-reading the posts by you and others who have been dealing with it longer. Pearl, congratulations on reaching zero mg, your normal blood values AND on your great bone scan results!  That is super. There is a light at the end of the tunnel! Thanks for the reminder on drinking water. I try to drink lots of water daily. Thanks for your good wishes. freesia
Edited by freesia - 12 September 2011 at 7:50pm
|
|
RickF
Senior Member
Joined: 23 March 2010
Location: S. Florida, USA
Online Status: Offline
Posts: 123
|
Quote Reply
Posted: 12 September 2011 at 8:46pm |
Congratulations on getting down to '0' Pearl! That's fantastic. Hope you continue to feel well. Also good news on the bone scan as well.
|
64 y.o. male Dx PMR Mar, 2010.
Started on 20mg Pred; currently on 10 mg.
|
|
luckycauk
Groupie
Joined: 26 March 2010
Online Status: Offline
Posts: 45
|
Quote Reply
Posted: 13 September 2011 at 6:48am |
An advantage of this forum is to get ideas on how to better manage PMR. What currently exists as medical practice is not definitive. I wish I had discovered earlier that staying at the same dosage of prednisone longer had the same effect on my wellness as increasing the dosage. This is based on my observations plus monthly sed test results. A trial of one person is not sufficient to make a definitive conclusion but it can be a start. Surely there exists a better way whether it is what helped me or what has helped someone else. The pooling of resources can only benefit all of us. Prednisone has helped manage my PMR symptoms but has not been the sole thing. Exercise, diet and so many related suggestions from this forum have been useful tools. Never have I felt as "well" on prednisone as compared to my pre-PMR self until last week close to two months at one half mg. The tip on how next to to taper I will definely try. Thank you so much for that and for all your good wishes . My husband has a bottle of champagne in readiness for zero prednisone!!! Hopefully we will all feel better eventually.
|
|
luckycanuk
|
|
freesia
Senior Member
Joined: 19 June 2010
Online Status: Offline
Posts: 426
|
Quote Reply
Posted: 13 September 2011 at 9:50am |
luckycanuk, have you stayed on an anti-inflammatory diet ? You must be doing everything right--good for you. This site has been more valuable than words can express. I've learned so much from everyone's experience and ideas. I don't know what I would have done without it. As far as SED rate, I actually wish my rheumy would keep testing it. It must indicate something or why would they even have it as a test? The bloodwork I did yesterday ordered by my pc doctor did include it, even though she's said she doesn't think it's as good as the CRP. I'm still not exactly sure what you mean about staying at the same dosage vs. increasing the dosage having the same effect on your wellness. The Ragnar method consists of variations in dosage, although only .5 mg or so. Or do you mean not tapering down so low that you have a flare and then having to increase to 15 mg or so? It's interesting that only when you reached .5 mg have you felt like your old self again! Congratulations !! I really am happy for you and hope we all reach this point one of these days! freesia
|
|
MrsE
Senior Member
Joined: 09 July 2010
Location: Italy
Online Status: Offline
Posts: 370
|
Quote Reply
Posted: 13 September 2011 at 11:23am |
I think she probably means that staying on a given dose for a long time means you eventually lose the aches and pains that almost inevitably accompany a reduction in dose and then waiting again seems to make the next reduction easier - is that right or have I misunderstood?
Someone has said in the past that their doc said at least 6 to 9 months on 5mg before trying another reduction - she was horrified but they came to a compromise at a bit less than 6. I feel that once you have dropped the dose it is a good idea to really make sure you are stable before attempting another - and 2 months spaces between quite small drops (1mg at most) does seem to provide a good result in many cases. Often the docs are after 1mg every couple of weeks and I think that is far too fast. Some seem to think you can go even faster - and it often ends in tears and a return to a high dose. There is also evidence that yo-yoing the dose like that makes the whole thing more difficult and leading to an overall higher total dose of steroid than if you stay longer on a dose before trying the next drop.
ESR - they discovered it and found it was raised in all sorts of nasty things so they did it I suspect. If it's raised there is something wrong - that's fair enough. But what is wrong remains a mystery! And just because it isn't raised doesn't mean there is nothing wrong - and that is the worse error.
Eileen
|
|
Not a Newbie to PMR - just to this community!!! Hi all!
|
|
freesia
Senior Member
Joined: 19 June 2010
Online Status: Offline
Posts: 426
|
Quote Reply
Posted: 13 September 2011 at 6:15pm |
MrsE, I'm not sure, because luckycanuk was using Ragnar's method of tapering which to me, means gentle ups and downs in dosage eventually resulting in a taper to the lower dose. It's hard to explain stuff over the internet so that everyone understands! I may not have worded my question in a way that is comprehensible! I apologize if so. Today I decided I'd better go back to 5.5 mg. I've been so stiff in the morning and overnight, and really exhausted during the day even though I'm spending a lot of time sleeping at night. Maybe the stationary bike is too exhausting, but I have to have some kind of exercise. And now that you say 6 to 9 months on 5 mg, I don't feel so rushed to taper more, although I was set to go down to 4.5 on Saturday, after 2 weeks at 5 mg. I just know I shouldn't. I'm not even sure I'm okay at 5. I'm tired of what prednisone is doing to my stomach (and who knows what else), but I'm worried that I am trying to rush this taper. Is being tired part of a flare? I'm taking iron so that (low iron) shouldn't be the problem, although I know my hemoglobin was still low...I am supposed to be feeling better! Best wishes everyone. freesia
|
|
Celtic
Senior Member
Joined: 25 June 2009
Location: UK
Online Status: Offline
Posts: 201
|
Quote Reply
Posted: 14 September 2011 at 12:51am |
Eileen
I believe you may have me in mind: my rheumy once advised me to stay on 5mgs for what would have been 7 months in total. I baulked, believing that steroids were keeping my eye pressure high in spite of eye drops, and we compromised at 5 months. However, this was after a severe flare - I had successfuly reduced without blips (albeit always with a little lingering pain/stiffness) from 40mg to 3mg when pain resurfaced so badly around my pelvic girdle and the front of my thighs to render me almost unable to walk again (both ESR and CRP levels had increased. I had probably noticed the increasing pain somewhere between 5 and 4mgs but knowing no better at the time (Ragnar hadn't yet posted his suggested regime following his successful reduction below 5  ) I continued to reduce as previously, and as I had been advised, by 1mg a month. Of course, I have since learned that many of us need so much longer between reductions once we hit 5 and 3 months seems to be the best yardstick. That 3 months included several weeks slowly tapering by half a mg followed by another 2 months of staying put.
Now, I've rambled on a bit above but just wanted to try and put it clearly.
To go back to the point where the rheumy kept me on 5mgs, this was after he had increased me back to 10mgs to cope with the severe flare at 3mgs. I stayed on 10mgs for 2 weeks, then 7.5mgs for 2 weeks, then alterrnate days of 7.5 and then 5mg. Staying on what appeared to be a sort of maintenance dose of 5mgs for as long as almost 7 months does make sense as it was the point where the original severe flare had occurred so obviously my body needed longer at that dose to get the inflammation properly under control. I then was told to reduce to 4mgs, stay there for a couple of months and then try 3. I did have another blip at this point following dental surgery (trauma to the body) and increasing back by half doses didn't work - I still needed to be back at 5 for another 6 weeks, then Ragnar posted his regime which I followed, but even more slowly, and here I am between half a mg and zero!
Freesia
As you have said, it's difficult to explain everything over the internet but I hope I have made the above clear enough. In my experience, the bottom line is that if you suffer a real flare in symptoms it necessitates an increase to the last dose at which you felt really comfortable and then when you reach back down to what had been the sticking point you need to stay there for considerably longer.
And by the way, I could never have ridden a stationary bike - for one thing my spinal problem wouldn't have allowed it, but I also feel that if there's real inflammation going on it could just aggravate it. In my experience, walking is by far the best exercise for PMR sufferers, but always on the flat. It's also weight-bearing so great for your bones, as is Nordic Walking and Tai Chi.
To answer your question as to whether being tired is part of a flare, I think, unfortunately, it is just part of having PMR, added to which in your case, Freesia, you have the anaemia problem.
I've really gone on a bit long here and I do hope you've managed to get to this point without falling asleep - sorry! 
|
|
Pearl
|
|
