I have been using the DSNS method to decrease from 11.5 to 11. I have gotten to 1 day old (11.5) to 5 days new (11) and was doing fine. I was starting with 1 old and 6 new when on the fourth day I started to feel terrible again. So on the fourth day I added .5 to bring the total for the day to 11.5 and obtained some relief.
The million dollar question is what do I do now ?
Stay on 11.5 for a few days and try to pick up at 1 old 6 new? Go back to 1 old and 5 new? Start over again from the beginning?
Desperate not to lose the gains I made so all suggestions are greatly appreciated.
Thank you !
Go back to the 11.5mg that obviously works - wait a month or so and try again. It is surprising how often that works.
Leave it and you may end up with a flare. And it may be you are hatching a cold or overdid something - it isn't a race. 1/2mg is not the end of the world!
Hi scotth, man I understand your concerns. I take it you have been PMR pain free, now a minor flare. What I have done, increase for a few days, get PMR pain free and dropped back to the last level I was comfortable. Your's would be the 5-1, it's a minor setback. I currently on 8 tapering to 7.5, it's not fun, but stay positive and try to get a smile on your face. I believe it helps! ☺️
I'm a bit confused.... doesn't your doctor lay out the treatment plan and give you instructions on what to do if during reduction you have a set back?
When I was reducing my medication on my first go around with PMR my Rheumatologist gave me very explicit instructions on what to do.
BJJB -
I have found it's not quite as simple as that.
I have been dealing with PMR for 2 years now.
Each situation is different so one set of instructions as to what to do does not necessarily apply to all set-backs.
At this time I feel I may have a better handle on what might work best for me.
I also find that the knowledgeable folks on this forum who have personally experienced these things in the past are a great source for suggestions.
My rheumy also respects my opinion so if I call it is often a collaborative decision for the particular situation at hand and past recommendations may not be applicable.
I wish it was as simple as "if so and so happens then do this".
Unfortunately, I have found it doesn't work that way since this disease process is not static and any decision must be based on the dynamic nature of what is happening at the time.
Hi scotth42,
I am at a lower dose than you - currently at 3 1/2 prednisone for PMR. I too sometimes have issues when I am on the last half of the DSNS. By the way, I reduce by only 1/4 mg.
Sometimes I do what others have said....go back on the old dose for awhile and then try again.
Sometimes i I take the old dose for 3-5 days, then go back a few steps on the DSNS (so maybe go back to alternate days) and then try to continue the reduction plan. I’ve had good luck with this a couple times but not with my most recent reduction attempt.....that one I gave up reducing and will try again after awhile.
Just don’t mess around with reducing and end up with a flare! It’s not worth it!
I understand your point.... I suppose I'm more comfortable, when it comes to adjusting medications, when I check with my physician first. My first go around with PMR I was lucky in that I had no issues when I began to reduce the prednisone.
I'm not criticizing looking for help on the forum, (or I wouldn't be here) but knowing myself I would gather the suggestions and then talk to my doctor about it.
I guess I'm a bit of a chicken..
For many of us it is a case of not being ABLE to sit down and discuss it with a medic - sometimes you have to wait 2 weeks or more for a routine GP appointment and then they have 10 mins. And many doctors don't have a clue, they are used to using pred for a short sharp course in asthma or pneumonia for example and that is a very different thing. It is no use following a fixed plan that doesn't work and allows a flare in and then you are back to the place you started months before, often unnecessarily.
Experience counts for a lot - and slowly more doctors are becoming educated about how it is a very different kettle of fish. The other problems tends to be they have often been told that PMR lasts less than 2 years - instead of the real duration which is a median period of 5.9 years. Reducing in 2 years and expecting it may possibly take 6 years are a rather different thing.
I agree with EileenH, the forum has been a great learning experience for me, I have learned far more here and shared articles with both of my doctors. Each person is different and will have a different experience on this journey, you can share your experience and it might help someone else, others experiences have helped me on my journey. I try hard to stay positive and keep a smile on my face. And believe strongly that it helps. ☺️
Look Eileen I was referring to myself, I wasn't saying self-adjusting was wrong. I'm just not comfortable doing it that way. I meant no offense.
It seems our medical system is a bit easier to deal with, as I usually can get in to see my physician within 48 hours, sometimes even on the same day.
As I said I was, it seems, extremely lucky, I had no relapses during the reduction phase
Again, I am not criticizing anyone's approach to dealing with PMR. Obviously I came to this forum to find out what others have experienced and how they cope. My reason for asking the question I asked was because the way my doctor worked with me and the way I responded to the treatment I had no reason to seek alternatives.
If I have offended anyone I apologize, my comment was about my way of dealing with this...not someone else's.
All good....I don't think anyone was offended and I am glad that you have a system in place that works for you.
Bjeanjellybean, I am not offend, I have a doctor who believes in rushing off Pred, I had a very bad flare, ended up in a wheelchair could not walk. When first diagnosed need 20 mg, after the flare need 30mg for 6 weeks to feel normal, not counting the Pred side effects. I don't know what I would have done without the forum.
You are one of the lucky ones, good for you. I consider myself very lucky to have found the forum and the help I have received. ☺️
Thank you Scott. I will soon learn if the system will be as good this time around as it was for my first bout with PMR.
Yes, I agree, the forum is a very helpful thing. I have just begun what is my 2nd bout with PMR. It's been 7 years since I ended my treatment for the first bout. I have learned a lot about the disease and the different severities that people have. I appreciate the articles people have directed me to and their personal stories.
Yes, I was lucky my first time around with PMR..... I guess I'll see how lucky I am this time around.
I sincerely hope you are able to overcome the setbacks you are experiencing.
Bjeanjellybean, I am doing great, don't know how many days I skied this year, was on the skis for 8 days straight, then 10 straight teaching, taught at two different areas this year. Several times I went skiing on my days off. Tomorrow I am joining a group of friends to go on a bicycle ride for the first time in 2 years. I thank EileenH and the rest forum for the help and guidance when I was down. Think positive with a smile on my face! ☺️
Don't forget to wear a helmet! Last time I tried to ride a bike I got on and rode directly into a ditch! LOL!
You're absolutely right ..... a positive attitude is so very important. I too try to keep a positive mindset. It's a bit tough at the moment because I haven't started treatment yet, and sometimes the pain and fatigue wear me down. But I have a wonderful husband who keeps me buoyed up....makes it much easier.
BJEANJELLYBEAN, I always wear a helmet, MIPS helmets one for bicycle riding, one for skiing. Before PMR normal rode 3,000-4000 miles a year. Tomorrow first time in couple of years. ☺️
Wow! I'm a walker ..... although haven't done a lot of that for a while. We moved back to Michigan 6 years ago, in part to help my father take care of his home. Although he drove up until a year before he passed (at age 93!) I was his companion for Drs appt etc.... didn't get a lot of time to myself. He passed away last June, and between dealing with his estate etc... and now the flare of the PMR...well..........
I have ridden my bike short distances maybe 5 miles....nothing that would add up to your mileage! Hopefully you'll be building up to that distance again soon.
I assumed you were - I was replying generally as I always do. I doubt anyone here was offended - but we almost always reply assuming others are on the same sort of wavelength as we are and are interested in how other systems/patients/doctors do it. So we tell you things the way it is...