Different Slow Drop: Ages ago my rheumie whom I... - PMRGCAuk

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Different Slow Drop

diana1998 profile image
23 Replies

Ages ago my rheumie whom I haven't needed for a number of years, gave me his version of a Dead Slow Drop starting with Week 1 say Wednesday, 1 day new dose.

Week 2 new dose Wednesday and Friday.

Week 3 new dose Monday Wednesday, Friday.

Week 4 new dose Monday, Wednesday, Friday, Sunday.

Week 5 new dose Monday, Wednesday, Thursday, Friday, Sunday.

Week 6 new dose every day except Saturday.

Week 7 new dose Every Day.

He didn't believe in dropping on 2 consecutive days until week 5.

I am trying to drop from 2mg to 1.5mg . Re the DSNS method, when I got to taking 1.5mg every day for 4 days, my pmr pain hit me in the wrists and across the collar bone which I hadn't felt for years, so immediately went back to 2mg for another 4 weeks and all good.

Now I want another go and wonder if rheumie's method might be a bit easier please??

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diana1998 profile image
diana1998
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23 Replies
SheffieldJane profile image
SheffieldJane

I should try it, there is logic to it and we are all different in our experience of this disease and its treatment. Let us know how it goes. We’ll call it the Diana method. 😉

diana1998 profile image
diana1998 in reply toSheffieldJane

Haha! I think my rheumie cribbed it from DorsetLady!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Very similar to my Simple Tapers - covering 5 weeks, 7 weeks or 14 weeks….

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador

That is basically the DorsetLady simple taper - the DSNS one is a slightly different way of deciding when to have the days of new dose and not based on weeks.

diana1998 profile image
diana1998 in reply toPMRpro

Yes. I thought I'd seen something similar and now you've reminded me it was Dorset Lady's method. Thank you.

SheffieldJane profile image
SheffieldJane in reply todiana1998

It’s bound to work!

Bcol profile image
Bcol

I've used a very slightly modified DL five week taper for a few years now. Works perfectly for me.

Meggsy profile image
Meggsy

I am presently using the DL taper to go from 0.75mg to 0.5mg and have repeated week 3 and week 4 twice. A couple of extra weeks after five and a half years is neither here nor there! I’m ultra cautious as I was previously on 0.5mg for 4 weeks before a minor flare surfaced. I sat on 1 mg for a couple of months, so hoping for success this time. When I reached 2.5mg I had to start tapering by .25mg. All the best and remember - the lower you go the slower you go. 🌻

Mazxstitch profile image
Mazxstitch

Perhaps try going down a quarter of a mg, rather than a half? By using a pill cutter you could get 1.75mg . Half a 2.5mg = 1.25 ...half a 1mg = .5 giving you 1.75 mg.

PMRnewbie2017 profile image
PMRnewbie2017

I agree with Mazxstitch. Dropping from 2mg to 1.5mg far exceeds the 10% rule. At these lower levels you have to consider1. What is your optimal dose

2. Pred withdrawal

3. Adrenal insufficiency.

I suggest 1.75mg, then 1.5mg then 1.25mg then 1mg using a slow 5 or 6 week taper.

Personally I think it's also beneficial to stay on the new dose for 7 to 14 days before beginning another round. All this may seem tediously slow but in the long run if you don't get into trouble and have to increase your dose, then the overall Pred load will be less in the long term.

I was at 1mg but hadn't realised my bucket was filling and did overflow so now I'm back at 4mg again because I didn't realise the aches were infact the grumblings of pmr.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRnewbie2017

Personally I think it's also beneficial to stay on the new dose for 7 to 14 days before beginning another round.

Agree - at least 14 days, it can take that long to "know" current dose is enough... before you drop again.

As we know from the numerous comments on here, if you don't make sure each dose is sufficient, and you take a few drops you end up not knowing which step down has caused the issue. Wish some doctors would realise that...

diana1998 profile image
diana1998 in reply toDorsetLady

I'm a nervous member and would stay on new dose for at least a month to prevent having to go back up....maybe. 🫣

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply todiana1998

Absolutely agree ….

PMRpro profile image
PMRproAmbassador in reply todiana1998

And so do I!!!

Zareda profile image
Zareda

The only way I was able to get completely off prednisone once I got to 1mg was to follow DorsetLady’s method using 1/4mg intervals. I’ve been off for 3 months now🤞and just had blood work done. Sed rate was 33…..normal for first time in over 6 years, but CRP was 18. Working on getting that lower but 3 months ago it was 20, so baby steps lol.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toZareda

Do keep your eye on your bloods, they are still on the high side, unless that's "your" normal.... and how are you intending to getting them lower?

Zareda profile image
Zareda in reply toDorsetLady

I’m trying to stay on an anti-inflammatory diet, take Omega 3 & Vit d3/K2. No idea if it’s helping, but figured it was worth a try. 🤷🏻‍♀️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toZareda

Always worth a try ..and fingers crossed PMR is in remission.

PMRpro profile image
PMRproAmbassador in reply toZareda

I wouldn't consider a sed rate of 33 normal but then, if it hasn't been lower than that all the time you have been on pred, maybe it is your normal.

Zareda profile image
Zareda in reply toPMRpro

The entire time I was on prednisone it was high…..gradually decreased from 110-59. 33 May still be on the high side but it’s the first time I’ve made it into the labs normal range lol.

PMRpro profile image
PMRproAmbassador in reply toZareda

How strange!

diana1998 profile image
diana1998 in reply toZareda

Brilliant. Well done you 👍

diana1998 profile image
diana1998 in reply toZareda

Whoops, mine's always 7!

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