| Author |
 Topic Search  Topic Options
|
freesia 
Senior Member
Joined: 19 June 2010
Online Status: Offline
Posts: 426
|
 Quote  Reply
 Topic: question about tapering and flares
Posted: 19 April 2011 at 11:24am |
I'm discovering I really don't understand prednisone. My blood values are almost completely normal now--CRP is normal and sed rate not quite, but it's good. I do feel as if the pmr has calmed down (for lack of a better word)--I feel pretty good-- and I am trying to taper. So now I am down to 7 mg/day. I've been at 7 mg for almost 2 weeks. Supposedly then, if my blood values are good and I feel good I should be okay to decrease the dose of prednisone, right? I am still afraid of tapering because last time (Nov. 2010) when I tried it, I ended up in agony within a few months. But then, maybe I didn't feel quite as well when I started tapering as I do now. I guess all I can do is try to taper and see if the disease flares up again? Is it all a big experiment?  This is beginning to seem like a really stupid question! Oh well. I can blame prednisone for making me lose my mind. freesia
Edited by freesia - 19 April 2011 at 11:25am
|
 |
MrsE
Senior Member
Joined: 09 July 2010
Location: Italy
Online Status: Offline
Posts: 370
|
Quote Reply
Posted: 19 April 2011 at 12:37pm |
Hi freesia - not a silly question at all! The whole thing is confusing - look at the mess the docs make of it and they are supposed to be experts! 
There are 2 forums running in the UK and we've been talking about this quite a lot over the last several months. The conclusion that has been reached is basically that going for the next step in a taper depends on a whole load of things but really there are two ways of going at it.
The idea is for us to reduce our pred dose to a level that manages the symptoms but doesn't make us too uncomfortable. We have had several ladies who have been persuaded by their docs to drop the daily dose by 5mg at a time and have ended up feeling really poorly and having to jump way back up the dosage. Others have reduced at a much much slower rate and been successful. Some of the ladies with the problems have gone back up to a higher dose until the symptoms have settled down and then tried this much more gradual taper and they have also been successful. 
On the basis of their combined experiencecs I would suggest trying this: Now you are at 7mg and feeling good, give it another week or so. If you still feel good, try alternating 7mg one day, 6mg the next for a couple of weeks. Below 10mg/day the drop should never be more than 10% and this suggestion at the equivalent of half a mg/day is 8.5% - if you have a pill cutter you could do 6.5mg/day every day, same thing.
You may find a bit of acheyness, lots of us do. If it starts and improves over the couple of weeks it was dropping the steroid dose and you have got used to it. If it starts and gets steadily worse - the dose is too low for you at the moment, go back to 7mg every day. You could make it even more gentle - 1 day 6mg, 2 days 7mg and repeat for a week or two, then do alternate days 6mg and 7mg for a week or two and then 6mg every day.
By making this drop very small you are in a position to catch it before you feel too bad - once you are on 6mg every day, stay there for a month or so and make sure you really are OK there before even thinking about another drop. Don't plan to do it when you are about to do the spring cleaning, the family is coming to stay or you have some other event in the diary. Be prepared to have a quiet day if you need it - and say no if you need to!
If that was succesful - do a similar plan the next time. The lower the old dose, the sneakier you need to be, stick to half a mg drops at a time. There are several ladies who had struggled who have been successful in getting down to 2 or 3mg a day like this. But remember - we are all different, it isn't a race and not getting there until Christmas 2012 is better than getting down quickly and then relapsing and going back to 15mg! Listen to your body - that is far more accurate than looking at any blood values - unless they have shot up if you are one of the people it works for. Don't allow anyone to make you feel inadequate by saying "by now you should be ..." or "my friend was off steroids in ..." - even if it is a doctor. if they haven't 1) had PMR 2) taken steroids themself they haven't a clue. So there!!!!  
But equally - don't panic! If you feel a bit stiff and sore - give it a week or two. It may improve and the drop has worked and you will have done the first step.
Good luck,
MrsE
|
|
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: 19 April 2011 at 1:54pm |
Hello Freesia
You're certainly not alone - no-one understands Prednisolone, not even the doctors! And when we all react so differently to both PMR and steroids is it any wonder? 
Sometimes I feel it's unfair to blame the doctors for getting people to reduce the dose along with whatever guidelines they follow which may prove too fast for some, as I have met several people who have, in fact, successfully managed to recover and get off steroids in 12 or 18 months. Then there are the rest of us!
I was lucky reducing from 40 mgs to 5, always finding that my routine blood test results before each reduction corresponded with how I felt - if the pain increased then so did the bloods and I would not reduce. I managed to reduce by 1mg a month in one go from 10 down to 5....and then the fun began! With increased and prolonged pain I was advised to increase back to 10 for 2 weeks, then 7.5 for 2 weeks, then alternate days of 7.5 and 5 for 2 weeks, then 5 for 10 weeks, the rheumy believing that as I had successfully managed to reach 5 previously then I would quickly be able to do so again and this turned out to be the case. But he then advised me to stay at 5 in spite of normal blood tests for yet another few months as that had been my stumbling block previously. I then successfully reduced to 4 following a similar method to Ragnar but even more slowly, doing 3 days at 5, 1 at 4.5, and repeat; then 2 days at 5 and 1 at 4.5 and repeat; then 5 and 4.5 on alternate days, finally reaching 4mgs where it was recommended to stay for a couple of months. I continued in this fashion until down to my present 1mg dose. Unfortunately, due to a long-standing problem with swollen neck glands following a throat infection before Christmas I have now been told not to try coming off the steroids in case they are helping in some small way. I'm going through a battery of tests at the moment and keeping fingers crossed.
As you are feeling so good at 7 and the blood tests are also good, then if it were me I would stick at 7 for another couple of weeks and then, as MrsE has suggested, try alternating the dose for another couple of weeks. Then if you have any increased pain or stiffness, give it a week or so for the body to adjust to the reduced dose and, hopefully, all will be well. On these lower doses especially there seems to be a need to reduce so slowly that the body doesn't notice the reduction and, of course, the adrenal glands need time to step up their normal cortisol production again having been suppressed by the higher doses. The steroid dose you are now on is equivalent to the amount of natural steroid normally produced by the adrenal glands so there is probably a fine balancing act going on! Hope the reduction goes smoothly.
|
|
Pearl
|
|
freesia
Senior Member
Joined: 19 June 2010
Online Status: Offline
Posts: 426
|
Quote Reply
Posted: 19 April 2011 at 3:19pm |
|
MrsE and Celtic, thank you SO much for your advice and help! I guess it's a matter of letting the adrenal glands get back into gear as you drop the dosage, and no one can tell you how long that will take.
I'm going to print this page up.
Celtic I am sorry about your throat infection and swollen glands. I hope this will resolve itself soon.
Thanks again, I am so grateful to you.
freesia
|
|
MrsE
Senior Member
Joined: 09 July 2010
Location: Italy
Online Status: Offline
Posts: 370
|
Quote Reply
Posted: 20 April 2011 at 1:46am |
Nanatjjj - whoever posted that about pred not affecting appetite must be one of the lucky ones it doesn't affect! Actually, both my daughter and I go off food when on steroids (bad thing in her case as she resembles a stick insect). Her daughter on the other hand can eat for Britain when she's on her high doses for asthma. Not only can it stimulate appetite, it also changes the way you metabolise carbohydrates - part of the diabetes problem with steroids. And it can cause fluid retention - and that also contributes to weight gain. One of the better ways to try and control the weight gain is to restrict carbohydrate intake to avoid the insulin spikes in response. Excess insulin leads to excess calories being stored as fat, especially around the abdomen. So, fewer carbs and don't snack on carbs between meals: the dieting concept of 6 or more small meals a day has been discredited as leading to too much insulin production and making it difficult to monitor calorie intake.
Yes, it was me who said to look back over a longer period to see if there is an improvement - the longer the better! It's like the stock market  - it may go up and down from day to day but over months you see a general upward or downward trend. It can take a good month to adjust to a new dose fully - but it's a good idea to wait until you feel stable at a dose before trying to go down to the next.
Good to hear you are doing well though,
MrsE
|
|
Not a Newbie to PMR - just to this community!!! Hi all!
|
|
MrsE
Senior Member
Joined: 09 July 2010
Location: Italy
Online Status: Offline
Posts: 370
|
Quote Reply
Posted: 21 April 2011 at 10:49am |
Nanatjjj - try alternating a day of 15mg and a day of 17.5mg for a week or so. A few people have also found that splitting the dose, 10mg in the morning and 5 mg later deals with the morning discomfort but that is a very personal thing. The weather can well have an effect - and keep the activity gentle whilst tapering. And when you feel hungry - try drinking some water or other non-sweetened drink. often you think you are hungry but are really thirsty and anyway the fluid helps fill you up. And when you have a snack, eat slowly and chew well, sit down and make it an occasion - don't just grab something in passing. Use a smaller plate to make your eyes think you had a bigger portion - and enjoy what you are having. That all makes a difference!
MrsE
|
|
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: 21 April 2011 at 3:13pm |
|
Nantjjj,
I hope you can adjust to the 15 mg, but don't do what I did and force the taper and end up with a horrible flare. That said--the horrible flare required me to go up to a higher dose for a few days and taper down, and within 6 days I ended up at 7.5, lower than ever before, and I did okay with it!
Also, I have been down to 7 mg for almost 2 weeks now, and I started to feel so much better, I thought I was home free. Then this morning I noticed my legs feeling achy again. Darn!! However, we did have rain last night so maybe this is influencing the PMR. Others on the board have noticed a relationship between the weather and their PMR symptoms, too.
I have OA, too, Nana. I think it's mainly in my neck and my back, and I have a bulging disk in my spine. My rheumy reminded me that prednisolone can help arthritis symptoms, too, but they don't like to treat OA with prednisolone, so I am trying to be aware of which disease is causing the pain! I really agree with her on this.
The diet part of this disease is really tough. I know I'd be better off if I went on the anti-inflammatory diet or alkalinizing diet. I notice that if I feel more crippled in the morning and I don't eat something at noon, or before, if I am hungry, I feel sort of funny. The food actually seems to help me feel better--as if it helps the prednisone work better and the pmr starts to clear up. I don't know if this makes any sense.
Were you this hungry when you were on the very high dose of prednisolone? I agree, don't do any drastic dieting; eating less sugar is always a good thing for one's health. Fewer complex carbohydrates helps, too.
Also: do you drink coffee? Coffee can stimulate the appetite.
Hang in there and best of luck with all this. Keep us posted!
freesia
Edited by freesia - 21 April 2011 at 3:49pm
|
|
Celtic
Senior Member
Joined: 25 June 2009
Location: UK
Online Status: Offline
Posts: 201
|
Quote Reply
Posted: 22 April 2011 at 12:50am |
As to Freesia's question "Do you drink coffee? Coffee can stimulate the appetite"
Coffee can also put stress on the adrenal glands - as the glands are already suppressed from the steroids and as you reduce will be trying to return to their pre-Pred state, then any such stress cannot be a good idea. I never drink coffee apart from my favourite cappucino when out for a meal......and then only ever decaffeinated.
Happy Easter weekend everyone!
|
|
Pearl
|
|
MrsE
Senior Member
Joined: 09 July 2010
Location: Italy
Online Status: Offline
Posts: 370
|
Quote Reply
Posted: 22 April 2011 at 2:08pm |
Good Friday here in Italy is a perfectly normal work day - isn't that strange!
The big boy experts in the rheumatology textbooks seem to be in agreement that a drop should NEVER be more than 10% of your current dose but no-one else seems to take notice! However - my argument is that if you take it a bit slower in terms of the size of the steps at any one time, the chances are you will do it with less pain and discomfort generally. It often takes a couple of weeks to settle down but basically if pain starts and gets worse over the 2 weeks the drop was a bit ambitious, if pain starts and then gradually settles it was just your body getting used to the drop. So you stay on that successful dose for a week or so and try the next half or 1mg. So you spend 6 to 8 weeks or even a bit more dropping 2.5mg - so what, if at the end of the 8 weeks you have got there. Far worse to try to drop faster, 2.5mg in one go and it fails - sometimes that means going back up to more than the previous dose to get it under control. I said the other week - don't use the stairs, use the wheelchair ramp! Why make things difficult?
Hope your weekend is a good one!
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: 24 April 2011 at 7:25pm |
|
Hi Nanatjjj,
I hope you are doing better and not in so much pain.
It sounds like your rheumy is very pro-active about your treatment, and that is good. It helps to feel that support and interest from your doctor.
Weight Watchers is a wonderful program--at least as I remember it--so sensible!
I don't blame you for worrying about having a flare while on the road. I wonder if possibly the excitement of traveling, and seeing new sights and places, might actually help your pain level ? Just a thought. Perhaps it doesn't work that way. Traveling can be very tiring. I hope it will all work out for the best for you! It's good that you are preparing and anticipating what could happen.
I do hope the trip will be fun and you won't have PMR problems while away!
Take care,
freesia
|
|
