Dead slow taper question
Posted , 8 users are following.
I was diagnosed 7 months ago with PMR. I've had pred as high as 40 mg with Methotrexate. Methotrexate did not help me taper. I've had a very hard time tapering and have been yo-yoing all this time. I am just now at 18mg pred. The side effects of pred are just doing me in.
Rheumatologist is going to start Actemra soon if the insurance company allows it. Takes them about a week to okay it.
I am just now catching on to the fact that I may be extremely sensitive to pred withdrawal. I'd like to try the dead slow approach. My question is does this make sense to start with my dose at 18? I read a lot of you use it at a much lower dose.
Thank you for your thoughts.
0 likes, 15 replies
EileenH barbara40602
Posted
Some people need to use it at higher doses - originally the idea was to get to zero below 5mg, then we realised it was useful even sooner - and that some people struggle with reduction from Day 1. And some people just don't get on with adding in methotrexate - but at least that does suggest it isn't RA!
Is your rheumy sure this is "just" PMR - anyone who requires high doses of pred and especially when they struggle to reduce should be investigated for other causes.
Someone on the other forum was assured by her rheumy she would be put on Actemra in a few weeks - the insurance has said no way until the patient has failed mtx and other biologics. Hope you are more successful. Some insurances say yes, but it must be administered in hospital. Good luck - and do tell us how it goes.
Anhaga EileenH
Posted
Sorry Eileen, I seem to be tag-teaming you today! Blame it on the (much needed) rain we're enjoying here....
EileenH Anhaga
Posted
It's persisting down here too - also desperately needed as parts of the region are getting short of drinking water.
I don't mind who tag teams me - as long as what they say is sensible and correct. Which yours always is!
barbara40602 EileenH
Posted
Thank you Eileen! My rheumatologist had me get temporal artery biopsies a month ago when I had my thyroid out due to goiters. No giant cells of course since I have been on pred for 6 months but the pathologist did find changes in the artery walls so GCA is suspected.
Rheumatologist did say that once approved by insurance I would get an infusion of Actemra once a month in the hospital. I am hopeful.
I'm beginning the dead slow taper today with 4 days of old dose to see how that goes.
This has been so hard to wrap my head around. I've never been sick before. It is a project. The info I've gathered from this group has been so helpful and given me hope. Thank you everyone.
Anhaga barbara40602
Posted
YES! If you have had trouble tapering at high levels, and have been subjected to yoyoing, I would recommend you start DSNS and not try tapering any faster. At this higher level it's possible using a start of 4 days, rather than 6, will be fine, but in your situation even if that still works by the time you are at, say, 12, or so, provided your symptoms are well controlled and you don't need to increase, then start the longer taper. And by really low levels many of us (me included and I did brilliantly to 7) have to slow down even more. As EileenH tells us, "It isn't slow if it works".
And the possibility of trying actemra (tocilizumab) sounds very appealing.
barbara40602 Anhaga
Posted
Thank you Anhaga! I started today at 17 and will take 18 the next 4 days.
We'll see if the insurance company will allow the Actemra. In any case I have this tapering plan under way and have hope.
amkoffee barbara40602
Posted
barbara40602 amkoffee
Posted
Thank you Amkoffee! I have a terrible time sleeping and always have even before the pred so I've done better taking it all in the morning. I am considering taking it at 2am like I've read others do. Perhaps half at 2am then half at 2pm wouldn't disturb my sleep.
You all are so very helpful.
EileenH barbara40602
Posted
barbara40602 EileenH
Posted
jean39702 barbara40602
Posted
Barbara, I finally realized my sensitivity to drops after 18 months and rwo flares. I started the DSNS at 17 mg, dropping only ,5 mg at a time and have made it to 10.5 mg. I travel a lot between extremes in temperature and will often hold at one level for a month or more. I've truly become a tortoise.
barbara40602 jean39702
Posted
Thank you Jean! Good to know. The roller coaster of emotions is hard to control most of the time. I will remember your words and try not to get discouraged if 1 mg drop doesn't work. I will try .5.
It is so hard to go slow with the side effects of the pred being what they are. Rather scary. But I am learning.
jean39702 barbara40602
Posted
Barbara, even though I'm going slowly. I'm now happy to have the wrinkles coming back to my face, being able to wear my pearl choker necklace (that literally choked me a few weeks ago), and, I seem to be losing 2 pounds in wieight with every .5 drop.
phillip11645 barbara40602
Posted
My understanding is that as long as you have achieved a tolerance to whatever dosage you are at it doesn't matter what the strength is when you start reducing. "Meth" did not help me either so I stopped taking it.
maid_mariane barbara40602
Posted
Hi Barbara
I started at 20mg September 2015 and i too have an extremely hard time tappering. My first taper was to 17.5 mg and it did me in and i was using the dead slow method. I then started tapering at 0.5mg again using the dead slow for the next several tapers. I also stabalize min. 3 weeks in between. My last 2 tappers I've dared to tapper 1mg and not doing to bad. I'm now at 13mg and in my 1st week of stabilizing.
I'm also one of the people who split my doses. We are all different and yes i have in year 2 weight gain fat face but I'm not yoy yoing.
My rumi has no problem with my slow tapper and actually didn't want me to do 1mg but i felt up to it.
We are all here for you.
Mariane