DSNS Method for pred dose reduction - distinguishing withdrawal symptoms from a flare?
Posted , 18 users are following.
Good morning,
yesterday after 2 months on 5 mg pred, I reduced to 4.5 mg. This morning I woke up with stiffness and discomfort in my legs and arms. I am correct in assuming that this is possibly pred withdrawal symptoms and not a flare? I am planning to follow the very slow dose reduction from Eileen's post that was kindly shared with me (https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439?page=7#3498075 ), thank you! Once I have established the 4.5 mg dose (by 21 June), when next would you advise dropping to 4 mg, after 2 months?
I find this site very helpful and would like to thank all of the contributors. I naively thought that this would be an easy patient journey, but it isn't and can at time be very frustrating.
Best regards
Heron
0 likes, 38 replies
Anhaga Heron82
Posted
If you feel as good by the end of the taper as you did at the beginning you don't really have to wait at all. When I was tapering regularly (down to lowest does now, apparently) I used to stay on the new dose for a week or so before attempting the next taper,that was my decision. I tapered by .5 mg when I was at low dose as you are, and took the six week version to do it. But have been stuck at 2 forever it seems....
Anhaga
Posted
lowest DOSE of course! Not eating venison......
Duffer55 Anhaga
Posted
what do you mean not eating venison.?
Anhaga Duffer55
Posted
My typo, I wrote does instead of dose...
garine1990 Heron82
Posted
From what I understand withdrawal symptoms happen right away and a flare happens a couple of weeks after reduction. I couldn't reduce by .50 mg at a time and right away. The only method that works for me is the slow reduction (11 weeks) and I can only drop .25 mg at a time and I stay on that dose for a while until the blood work shows no inflammation. If it shows inflammation, I stay on that dose longer. I also believe that a common cold or sinus infection can show inflammation so that's something to consider when your results come back. Good luck with your reduction.
karenjaninaz garine1990
Posted
I also only reduce by .25 mg at a time. So far that has worked for me at lower levels. I haven't had any flares from going too fast and remain pain free.
jillian92038 Heron82
Posted
I think you ask the question we all have a problem with, and like you I am extremely grateful for all the expertise and support that we receive from this site. I have had a couple of flares in my 4 year journey and each time it took me too long to work out if it was withdrawel or flare. Looking back I think that when I have a flare my brain stops working and it takes me a week or two to accept what is happening.
I would really welcome some medical research/guidance re withdrawal / flare recognition. None of us want to up our medication if it is just withdrawel. I am
seeing my GP in the morning so I will ask the question. Trouble is , lovely as she is I am coming to the realisation I know more than she!!!
Ours is probably a 'background' condition.
jillian92038 Heron82
Posted
I think you ask the question we all have a problem with, and like you I am extremely grateful for all the expertise and support that we receive from this site. I have had a couple of flares in my 4 year journey and each time it took me too long to work out if it was withdrawel or flare. Looking back I think that when I have a flare my brain stops working and it takes me a week or two to accept what is happening.
I would really welcome some medical research/guidance re withdrawal / flare recognition. None of us want to up our medication if it is just withdrawel. I am
seeing my GP in the morning so I will ask the question. Trouble is , lovely as she is I am coming to the realisation I know more than she!!!
Ours is probably a 'background' condition.
jillian92038 Heron82
Posted
I think you ask the question we all have a problem with, and like you I am extremely grateful for all the expertise and support that we receive from this site. I have had a couple of flares in my 4 year journey and each time it took me too long to work out if it was withdrawel or flare. Looking back I think that when I have a flare my brain stops working and it takes me a week or two to accept what is happening.
I would really welcome some medical research/guidance re withdrawal / flare recognition. None of us want to up our medication if it is just withdrawel. I am
seeing my GP in the morning so I will ask the question. Trouble is , lovely as she is I am coming to the realisation I know more than she!!!
Ours is probably a 'background' condition.
Michdonn jillian92038
Posted
Unfortunately after having PMR for several years and being on the forum for a couple of years, I think you will better information on the forum than in the Rheumatologist office.🙂
EileenH Heron82
Posted
However slowly you reduce you won't get past the lowest dose that manages the inflammation until it burns out. The idea of the scheme is to make them easier to distinguish - you are going so slowly it almost CAN'T be withdrawal. Which leaves not enough pred to still manage the flow of inflammation.
Heron82
Posted
Thank you to all for replying. How do folks reduce by 0.25mg when the tablets only come in 5, 2.5 and 1mg? is a tablet cutter available on line? i take the gastro resistant tablets and omeprazol. Are other perscribed the same?
kind regards
Heron
garine1990 Heron82
Posted
Mine are not gastro resistant and I divide the 1 mg into 4 with a pill cutter. Not the best way to get the 100% true amount all the time, but it seems to work.
Anhaga Heron82
Posted
You can probably get a cheap pill cutter at the pharmacy. Mine actually gave me a free one; it had a promotional logo on it, long since worn off, works fine.
Michdonn garine1990
Posted
gatine, I have not tried the double split but have cut the 1mg pretty good. Currently on 5mg tapering to 4.5mg, figure at some point will have to reduce by .25mg. I hoping anyway. Thinking positive, staying active with a smile. 🙂
Silver49 Michdonn
Posted
I am just starting the 2 to 1.5 today but if it doesn't work this time I shall try 1.75 as it may be the next step for me. This will be the 3rd time I have tried to go to 1.5 but I am having no pain on wakening and have some quiet -ish weeks so thought that this would be an ideal opportunity to reduce. I have not had any coated tablets since a long time but to date have had no problems as I always ensure that I eat before taking my meds.
ptolemy Heron82
Posted
Hi Heron, if you take the gastro resistant tablets you must NOT cut them. Rather than dropping the whole amount in one go you can vary the amount day by day (using the deathly slow method.
Michdonn Silver49
Posted
Good luck Silver, if you had to live comfortably on 2 mg that wouldn't be bad. I don't have the link anymore, but the article stated that lower doses of Prednisone you not do hurt, except increase the risk of cataracts. Try to stay active, positive with a smile. 🙂
EileenH Heron82
Posted
Very few people bother to reduce by such a small amount - using the DSNS approach you really shouldn't need to. You must not cut gastroresistant tablets and, frankly, there is little reason to take both g/r AND omeprazole.you can easily reduce by 1/2mg at a time down to 2mg by using a mix of tablets.
EileenH Michdonn
Posted
Yes - but that is ALL PMR doses, even at 10mg it isn't half as bad as it is painted.
Michdonn EileenH
Posted
Eileenh, I agree unfortunately lost the link to that article and DSNS, when I changed phones. If you have the time please send them to me again, thanks. 🙂
richard07199 EileenH
Posted
But what about the recent publication (actually just an abstract) that says that as much as 50% of the people who have taken prednisone over a period of time have adrenal damage? Sorry, I don't have a reference.
Silver49 Michdonn
Posted
Thank you, Michdonn. My eye health at recent checkup was good .....for my age...... and no problem with cataracts so that was reassuring.
EileenH Michdonn
Posted
DSNS is always to be found on the front page of the forum:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
These the ones you mean???
EileenH richard07199
Posted
It is from a Leeds group - but I will have to look ...
It was of a skewed group of patients - most of them had been referred because of problems reducing. But it does indicate that there are more problems than many rheumies dream of.
But that the adrenal glands don't wake up isn't necessarily due to the pred - it is possibly associated with the whole picture - some have suggested that poor adrenal function may well have something to do with the underlying disorder for PMR in the first place.
garine1990 Silver49
Posted
Silver, what happened the first two times you tried? Did you try the full .50 mg?
Michdonn EileenH
Posted
Yes, thank you EileenH, I guess one of these days I should get back on a computer. Oh well got to keep smiling 🙂
Michdonn Silver49
Posted
Silver, my annual is in a couple of weeks, if my cataracts are bad, a couple of operations and no more glasses maybe after 72 years, that would be nice!🙂
Silver49 garine1990
Posted
I quickly realised that it was too soon and I was sore like I'd been prior to diagnosis after about 2 weeks or so. I recognised that the initial pain was withdrawal which I knew from previous reductions. It was the full .50 mg, garine 1990 .
Silver49 Michdonn
Posted
I hope your checkup goes well. My eyesight improved a number of years ago and I no longer need specs for distance, only for reading. My aunt was the same. I am a year younger than you.
ptolemy Silver49
Posted
As we grow older our long distance sight tends to get better, so if you needed glasses to drive before you can sometimes stop using them. The downside is we start to need reading glasses.
Silver49 ptolemy
Posted
No downside for me, ptolemy, as I needed reading specs at the same time as I needed distance ones. I can still use long arms a lot of the time!!
Michdonn Silver49
Posted
Silver, yes I started wearing glasses in the 4th grade and almost every year till mid 20 I need stronger prescription, then at some point it changed need weaker, but also correction, for reading. Being a diabetic I go in once a year for a eye exam and have to have a medical report from my PCP to get my license. Which is not a bad idea, annual licenses, 75 and older.
Michdonn ptolemy
Posted
Ptolemy, I need glasses for both and have for many years. Smiling 🙂
ptolemy Michdonn
Posted
That's life!
Silver49 Michdonn
Posted
I had what was described as a 'lazy eye' as a child and had to wear a patch on the good eye. I remember going to the hospital regularly to be checked. It was suggested that I have surgery but my mother declined this offer and I had no problem whatsoever throughout most of my adult life. it was only in my late 40s that I needed specs. I appreciate that as a diabetic you would have to be checked regularly. It sounds like you take great care to be sensible about your diet, exercise etc. which is so necessary to ensure continued good health. We should all follow your example, Michdonn.
Michdonn Silver49
Posted
Thanks Silver, I must admit I been watching my diet and exercising since middle years. Now that I am in my 80's it was probably has helped. I never have tried to be example, I just tried to do what I thought was best. I am not perfect, I do cheat from time to time, but I think positive, staying active and smile! 🙂