Need to clarify DSNS tapering.

[cctraveler]

I apologize in advance for requesting revisiting the DSNS tapering system, as well as the other frequently referenced system, but I couldn't find them on this forum. My need stems from a very one-sided discussion with my rheumatologist last week. He talks much more than listens, and seems to forget that I'm part of this team. If I can present a written copy (and my printer works now, so I can copy the info this time) maybe we can have a more effective discourse. Brief background: PMR only (as far as I know -- biopsy neg), started @ 20mg mid Feb, ESR/CRP have been "normal" for months. Currently @ 7.5 trying a slow taper to 7. Doc insists on an abrupt drop (currently 1 mg) every two weeks -- any symptoms, back to previous dose for two full weeks, and try again. I've been using the slow taper, but I'm tired of lying about it (harder to keep my story straight -- I've heard the best way to improve your memory is to always tell the truth). So, ... if someone could once again give me a link, I'll at least try to get him to look at it.

I read these posts every day and am so grateful for this caring community.

[Sandra_123]

Hi, all the steroid taper plans discussed on this forum can be downloaded from my steroid taper web application. You don't have to log in to view and print the taper plans. Go to steroidtaper.com.

Best regards

Sandra

[DorsetLady PMRGCAuk volunteer]

Hi,

My own as attached. It's slightly quicker than some, so doc may be ok with it.

1st week - Sun & Thurs new dose

2nd week - Sun, Tues & Thurs new dose

3rd week - Sun, Tues, Wed, Thurs new dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose

5th week - all new dose

[Pollygoat in reply to DorsetLady]

Hi DorsetLady.

I found your plan. I am going to try this reducing from 8 mg to 7 mg. Facing it with enthusiasm and gusto. I'll let you know how i am doing. Thanks again

[DorsetLady PMRGCAuk volunteer in reply to Pollygoat]

Okay- not too much gusto though!

Many find reducing by only 0.5mg is better at lower doses, certainly below 5mg..

[Pollygoat in reply to DorsetLady]

Thank you . 🙏

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk...

I don't get this concept of getting patients into a yoyo situation - it has been said for YEARS by top experts that leads to problems. If it didn't work this week it is hardly likely to work in 2 weeks time! And at this level it isn't just the PMR - it is the adrenal function that is part of the equation. Although - I wonder if he is one of these people who totally erroneously has the idea that the high dose of pred at the start "cured" the PMR and it is only adrenal function that has to be tickled back to life. To have got from 20 to 7.5mg in 6 months is very good going. PMR pasts for up to 5 years - not one.

[altywhite]

Hi....have to say I lie about my tapering too...it's just easier. My rheumy;s just don't get it but luckily I have a GP who lets me do my own thing according to how I feel. I'm supposed to be staying on 10mg for a year (until Jan), but have been feeling ok for a few months now so started tapering.....I'm still only on 9mg but I'm getting there. I know the rheumy will tell me to reduce by 1mg every couple of weeks.....that's too fast for me so I suppose I;m giving myself a head start.

[kulina]

cctraveler, don't lie about it, tell him you tried his way and it didn't work now it's time to do it your way. After all it is your body and you will be the one in pain. This is exactly what happened to me. My doctors, who I really like, wanted me to drop from 10 mg to 7 mg, to see what will happen, according to them. I felt like an experiment. Anyway, they said drop 3 mg and see you in 2 months. Knowing I had 2 months and listening to the forum I dropped the 3 mg slowly but I still had a flare by the end of the 2 months. So, I told them it was not doable, I will be dropping my own way and they agreed seeing the flare. I'm down to 7 mg now, 1 month behind their schedule but I have no pain. Good luck

[cctraveler in reply to kulina]

Thanks to all who have replied. I'm printing the various tapering schedules so I can demonstrate to the doc that I'm far from alone in thinking (and knowing from personal experience) that a slow taper is just better -- for several reasons. Time for me to just say what's on my mind. I guess I'm afraid he'll dismiss me as his patient, but that may be better anyway if we're so far from "on the same page."

I had such a good day today (and on my new dose, with appropriate taper no less). And I think a big part of that was feeling supported and validated here. I even went to a Rodeo parade. Nothing to do but drive a bit, sit and watch 200 horses, 2 mules, a Brahma bull (a real one, under saddle, yet) and a T-Rex (I don't think it was real) walk down Main Street, Salinas, CA (big rodeo town, so rodeo week they do this horse parade every day -- I love it, but don't go to the rodeo).

Thanks everyone. Wouldn't want to do this without you all.

[kulina]

Dismiss you? Then you need to get a doctor you can talk to and be comfortable with. Don't put up with anything less but someone who listens to you. I had to go through 4 opinions before I found these doctors who listen to me. I don't know how to explain it other than say we seem to have a rhythm in our communication and it feels right. If it doesn't feel right, it isn't and don't be afraid to look for better. I'm glad to had a good day, it will only get better.

[cctraveler in reply to kulina]

You are so right. I'd rather leave an appointment encouraged by my progress than stressed out because I didn't stand up for myself. I need this. Thanks.