Need your wisdom on plan for next decrease

Bones, joints and muscles
1

Hi all,  this is getting old but I'd like a little advice on my next decrease.

HIstory:

Diagnosed in March 2013 - put on 20mg pred (white tabs)

- my GP had me reduce to quickly and by the time I saw my rheumy in May I was having a flare and he put me back up to 20mg

- I had joined the forum by that time and realized I needed to decrease very slowly which was also the suggestion of my rheumy (although he would have done it a little quicker)

- by the end of July 2014 I was absolutely thrilled to begin my last decrease to "0".

-I guess my body definitely wasn't ready for that move. I had had a very stressful week (wasn't supposed to be but ??) and I started with the stiffness and then the pain began.  I knew it was a flare and tried going to 1mg for almost 2 weeks, then 2 for a week then back to 5mg where I stayed until October.

- in Oct 2014 I decreased to 4mg using the DSAS method which I continued on successfully until January (even through travel and surgery).

-In January, after all the busy holiday time was over, I tried to decrease to 3.5mg still using the DSAS method.  I made it to the 3rd week and had my worst flare yet.  I was stiff and in pain and got pretty angry about it.

- I increased back to 4mgs - that didn't work so increased to 5mg for 4 or 5 days and that didn't work so decided to blast it with 10mg (on the advice of our wise women). 

-I have been at 10mg since Jan 29, 2015 and I'm going to begin to decrease to 9mg.  I was going to use the DSAS method but I've been reading that some people can do alternate 10mg and 9mg to see how it feels and also some do 10mg for 3 days then 9mgs then another 3 days at 10mg and see how it goes. 

-considering my history, I'm really afraid of going to quickly but would dearly love to get to 7.5mgs at least because of the side affects.  

- FYI, I have never done a decrease if I have symptoms of inflammation.  

Sorry for going on and on but I thought it might help if you knew some history.

I would so appreciate your thoughts on this.

Thank you and big hugs,  Diana   xo 

-

2

When I dropped to zero last August it took 2 months to go into a serious flare which I thought was gonna kill me. My Doc would not let me go back on again even though I had to resort to a wheelchair to go see her. Changed over practice doc but still same reaction. In January this year Found I had two packs of Preds and was pretty desperate. I took 40 then reduced by ten next day then by five each day until I reached 1. The first day after 40 I felt fine and could walk and function normally after

I went to docs and explained this and was told off for self medicating... I got real mad and said if they did not give me the correct dose I would report them. The lady doc refuses to see me now and I am stuck with the imbecilic one... However once I had a supply I started 20 a day and did the slow reduction because ten was not enough to keep symptoms at bay. I am now on 16 so feel I am doing well. I feel fine and can function it is a slow process but never be afraid of the Preds... They are unfortunately your only best friend white PMR

3

Diana, you spent quite a long time at 10mg so you should, with any luck, be able to reduce back down successfully again now.  It's difficult to tell which level has been your most comfortable in the past as you have been yo-yoing up and down somewhat.  But after a just a year on treatment you are still at a stage where flares can be fairly common so I feel you still need to taper carefully, rather than going straight to 9.  As you have spent a good length of time on 10mg, you may find it fairly easy to reduce down to 9mg, so perhaps alternate days of 9 and 10 for a couple of weeks will work.  If you do follow that routine and it proves successful, you can then plan how to approach the next reduction.  One step at a time!  And everything crossed.  Oh and by the way, don't overdo things in the next couple of weeks whilst your body will be adjusting to the steroid withdrawal.      

4

Lovely photo, Diana!  

5

Thanks Mrs. O,

Will  give that a try but do you think every third day would be better.  I am so afraid of another flare😬

 

6

Thank you😊🌸

7

Diana, it's really trial and error but certainly if you feel happier trying the reduction from 10mg every third day, then give it a go.  It is uncertain at which dose you were most comfortable for the longest period of time - if we knew that then we would probably suggest a slightly faster reduction (can prove easier the second time around) back down to a couple of mgs just above that dose.  But go with your gut instinct.

8

Mrs.O,

I felt the best at 4mg. I had arthroscopic while I was in Mexico, went thru use of crutches, therapy, travelled home and made it through Christmas and didn't have a twinge.  That's why I was so surprised to have the problem going to 3 1/2mg

Does that help😕?

9

Diana, it could be that all the travel and surgery was perhaps a step too far whilst on 4mg but didn't produce noticeable problems until you tried reducing.  Perhaps a slight increase in dose for a few days surrounding the surgery may have helped.  As I said trust your gut instinct and start heading to 9 either on alternate days or a couple of times a week - you won't know until you try it!

10

Thanks💐💕

11

That is what the DSANS method is doing only taking longer to get down to alternate days of 10/9 or whatever dose you are at and helps very sensitive people. I do say you could start further down - say at new dose one day, old dose 3 or 4 days or even at alternate days.

However you do it, I think you can take a few things from what's happened - you originally got to zero in 15 months and the medical literature reckons that about 25% of patients are able to get off pred in under 2 years but this group are at a higher risk of having a flare/relapse, whichever you want to call it. You are not reducing relentlessly to zero, whatever reduction scheme you try using: you are looking for the lowest dose that manages the symptoms so you can remain there if necessary for some time. Once you get to 5mg it is a pretty low dose and there are some doctors who keep their patients there for some months before embarking on the next stage - it seems to help. I'd also say to stay at each subsequent dose for at least 2 months before trying the next - to be as sure as you can it is still enough. Half a mg can make a big difference - but if you drop too soon after the last reduction you won't know which if the 2 reductions was the culprit. 

If you feel a flare starting, a lot of doctors would tell you to go immediately to current dose plus 5mg for at least a week to hit it hard, don't wait for it to get hold. Then you can go straight back close to the dose you were OK at before the flare and then stick there for a few months - your body isn't ready for the next step down and if it wasn't last week it isn't likely to be ready next week either.

12

It sounds as if some of you PMR patients are decreasing on your own judgement?  If that is correct, are you being coached by your MD on how do do this? 

And when you refer to DSAS what does this mean?

13

Hi Margo,

DSAS means Dead Slow Almost Stop and I'm sorry I don't know how to send the link from my tablet but I know someone else will.  It is a method of decreasing pred that has been very successful for many, many people.

I am fortunate that my Rhuemy understands PMR and I referred him to this website.  He trusts that I know my body and also that I have an understanding of how PMR and decreases work.

There are many on this forum that don't have the support of their Drs. who think they know best and have had some very painful and frustrating results.  

If I were you I'd discuss this with your Dr. and if he/she is resistant to listening or reading about PMR on this site find one that will.  

I have learned that you must be VERY patient with this because rushing will knock you back and each time it's harder to get up and some of us have taken on our own decreases.

I hope this helps a bit.

Have a very Happy Easter🐣🌷

Diana🌸

14

The "Dead slow and nearly stop" reduction scheme. 

If you follow this link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

you will find a thread where there are a load of links to other resources in the first post. In the replies you will find the outline of the DSANS reduction scheme.

Many doctors have no experience of reducing prednisolone in PMR and try to do it the way they do it with any pred taper. As PMR is a chronic illness it doesn't work. Here on the forums we try to provide not only personal experiences but also the links to appropriate medical literature which you will find in the first post of that thread. The description of the slow taper is self-explanatory.

If your doctor tells you to reduce but doesn't tell you HOW best to go about that there are suggestions there - both from patients as to how they managed successfully under guidance from good and experienced rheumatologists and also from the support groups where we worked it out for ourselves that we failed to reduce mostly because the steps were too big.These reduction schemes have been shown to rheumatologists and some have taken them on themselves for their patients. One is to be used by a research group in the near future. But they have been approved as useful approaches.

If your doctor tells you to reduce by 5mg and it doesn't work and you come here to ask what others do - we give you the information to go back to the GP and ask to try a way that will be more likely to work. Some will listen, some will not. A good GP will always be prepared to listen to the patient's side too - and when presented with documentation many of them have been willing to indulge the patient. When they discover something that works they then take note for future patients. A lot of them though are happy for the patient to reduce at their own rate that works for them. It is difficult to INCREASE your dose without dicussing it with the GP - they have to hand over the extra tablets you will need. But most of them will realise a flare of symptoms needs a bit more pred.

In the UK many patients are handed a prescription for prednisolone with very little further help or information beyond "Take 15mg/day". A rheumatologist is seen through the hospital and says what the dx is but doesn't provide the script or the management between visits, which may be 6 months or even a year apart. The GP has that job. 

15

Done at the same time you were typing Diana ;-)

16

Hi MrsO, my doctor wants me to reduce, but i am going to have a chat as i have only been on pred for 3 months, and today i had a really bad time,so i dont think its time to reduce yet as much as i would like to.

17

Thank you.  I am finding the weight gain issue very disappointing.  i struggle to keep my weight in a certain range and since dx in January i seem to ge gaining a pound or two every week, my body is becoming bloated as well as my face.  My food intake is pretty much the same.  Does anyone have any explaination as to why/where this weight gain comes from-

 

18

Pred changes the way our bodies process carbohydrates. There is also somefluid retention. I have lost nearly 40 lbs while still taking pred - by cutting carbs drastically. Other ladies have said they have not put on weight - also by restricting carbs. 

When I cut carbs, the weight around my mid-riff was the first to go - and that is the weight gain that is typically associated with pred.

19

That is very encouraging....however, did your appetite grow?

20

Hi I am really trying hard to get by on 1pred daily.Have been tapering down since diagnosed in April 2013. Symptoms always in Background as in occasional groin pain and slight shoulder stiffness but persiveerd so far.My Esr reads at 12 and Doc says fine so hoping to come off totally soon. I am 75 and play active outdoor sports but realise that preds do give u false energy so back to reality this is how it is for me now and tiredness is a factor.Here's hoping .