I recently abandoned a taper from 8-1/2m to 8m because of fatigue; reconsidered the length of time I'd been at 8-1/2m. Have used the DSNS method successfully, but last July I had a problem with it.
I had been at 7-1/2m for 12 weeks, doing fine....did the DSNS for a month and at the end of the month flared badly.
Question: Is there another method for me to try...I.e., every other day on each dose...or something? It was so discouraging to go a whole month and have "missed" the point where it wasn't working.
But I would suggest that if the DSNS method isn't working then you might actually need 8-1/2mg if that's working for you and 8mg doesn't.
there comes a point at which you need a certain dose to stay on top of the inflammation - and if it subsides then you may be able to reduce.... at least that's my theory. :-)
Thank you! I am not quite ready to reduce, as you have suggested....I am just thinking I might try a "slower" method than the DSNS method because I had such a bad flare after missing 3 lousy milligrams in a month!! But you are right....maybe being at 7-1/2m for 12 weeks was not long enough for me!
I've been at 7.5mg for three months and just starting to think about reducing - AND I'm on Methotrexate which is a 'steroid sparer', meaning I need less as it works more effectively.
The last thing you want to do is drop too fast and risk the yo-yo effect.
but you don't need this yet - you have to get things under control first before you reduce and when your rheumy wants you to reduce so she can see what is going on you don't do it this slowly.
It doesn't matter WHAT slow method you use - it wil NOT get you to a lower dose than the one your body needs. And if your body needed 7.5mg and you tried to get it to accept less - that's possibly where the flare came from. Unfortunately even half a mg can make a big difference. BUT - the activity of the underlying cause of the symptoms we call PMR can also vary and maybe your trying to reduce to 7mg coincided with an increase in activity of the autoimmune part of the illness. If that is the case - then you won't get back to 7,5mg without waiting a bit longer for the flare to quieten down.
I had a flare of that sort in February (nothing to do with reduction, had been on a stable 5mg dose for months beforehand) which meant going back to 15mg from 5mg. I've got down to 10mg but can't persuade my body to accept less at present.
I'm sorry but I don't understand what you mean by "every other day on each dose" ?
You can slow the DSNS taper down by repeating each step as many times as you like, nothing is fixed in stone - you are obviously doing it 1/2mg at a time and you can't easily manage less. But why worry about 1/2mg?
I heard of the every other day dose and tried it earlier this year. I was at 5mg and one day I took 5 mg and next 2.5 mg. then 5......and continued this for several weeks. Well that didn't work out as I hoped. I went into a flare and Dr put me back to 7.5 then I printed off the DSNS method and taped in my medicine cabinet...I've had PMR for 5 years
Perhaps alternating 5 with 4 mg would have been a safer experiment! We are advised never to reduce more than 10% of dose at a time. Going from 5 to 2.5 no matter how tapering is attempting to reduce dose by 50%
Right on Eileen...you are exactly right! Trying a DSNS taper, but not also controlling the activity level, was probably the cause of the flare I had this summer. I also thought I could quickly go back to 7-1/2....no way.
i am happy at 8-1/2....will wait it out. I was looking at the "every other day" theory thinking I would notice a decline faster...but that doesn't really make sense. I just can't take even a 1/2m drop before my body is reafy😊
Hi there. Don't mean to intrude, but speaking of Methotrexate, I think my doc is adding that to my Prednisone. Any issues with that drug for you? Thanks!
You are not iintruding at all! Ask me anything you like :-)
I've had very few issues with MTX - other than raised liver function test results (recently confirmed fatty liver disease from ultrasound). I did feel a bit 'off' for a couple of days after each weekly dose, but that's lessened as time's gone by.
You might want to ask Susanne M UK, she's had terrible trouble with it - I'm sure she wouldn't mind if you sent her a PM.