Taper from 5mg down...

[tiasbear]

I'm on MTX as well as pred, and not sure how I want to go down from here. Would it be better to go from 5mg to 4mg on the DSNS method, or just drop from 5mg to 4 1/2mg? I haven't yet discussed it with Dr. but I have a feeling he'll want to go lower than that. Not sure.

[Anna135]

This is exactly the dilemma I am having at the moment as well! Although I'm on 7mg, looking to get to 6mg. My last attempt to get to 6mg was unsuccessful and I have secondary adrenal insufficiency, so need to go slowly. I'm also on mtx.

I'm thinking the DSNS would be better for most situations 7mg and down, it's just very complicated though. I don't know about you, but I'll definitely need to keep a chart on the wall and cross off each day, so I can keep track of which dose to take and when!

[DorsetLady PMRGCAuk volunteer in reply to Anna135]

Hi,

That's why I devised this one -

1st week - Sun & Thurs new dose (Mon, Tues, Wed, Fri, Sat old dose)

2nd week - Sun, Tues & Thurs new dose (Mon, Wed, Fri, Sat old dose)

3rd week - Sun, Tues, Wed, Thurs new dose (Mon, Fri, Sat old dose)

4th week - Sun, Tues, Wed, Thurs & Sat new dose (Mon, Fri old dose)

5th week - every day new dose

It's very similar, not quite as long, but looks less complicated written like this.

Plus if you have a weekly pill box you can sort it out at a quiet time, and then no confusion.

[GerriMc in reply to DorsetLady]

That's great. I'm still at 17.5 and am definitely going to taper more slowly. I got to 15 but had to go back to 20 following a bad flare. Can I ask, at the end of the month, do you stay at the new dose for a while or continue to reduce?

[DorsetLady PMRGCAuk volunteer in reply to GerriMc]

Hi,,

It depends how you feel really. Usually I just went straight into new taper, ocassionally stayed a bit longer if I didn't feel right or I knew something stressful was on the horizon. For the first few times you could stay another week or so just to make sure.

Two weeks at a new dose should be enough to tell whether you are going to flare or not.

Plus if you look at it in weekly terms, if say you didn't feel everything was okay at week 3, you can easy repeat week 2 again.

As we always say, it's only a plan, and if you need to adapt it for any reason then do so.

Life has a habit of throwing a curve ball at you unexpectedly, so you sometimes need to factor that in. That's something the doctors don't think about, but as you get more experienced with your illness you will!

Take care.

[GerriMc in reply to DorsetLady]

Thanks, that's great advice. X

[Sandy1947 in reply to DorsetLady]

So glad you created Tapering for Dummies! This really helps me! Keep laughing those of us with Pred Head!

[DorsetLady PMRGCAuk volunteer in reply to Sandy1947]

I have you know I created it for myself!!!

Thanks for the compliment🤔😉

[Sandy1947 in reply to DorsetLady]

Thanks for the laugh! It's not so bad when I realize I'm in good company.

[Hidden in reply to DorsetLady]

Thank you DorsetLady, I like it for my own situation - was on the slightly longer reduction, going down from 9 but on Leflunomide as well now plus of course Pred. It - Leflunomide -took a bit of getting use to - 6weeks, just must not get too 'cited' as my young granddaughters use to say- bless them ,ScubaDiver

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Good, we all have to find what's right for us.

Take care

[PMRpro Ambassador in reply to Anna135]

If you sit down at the start of each reduction and mark the first day with the new dose with a coloured pen, count the number of days you have decided to do with the old dose and then repeat that, always having one day less of old dose it makes it look far less complicated. The advantage is that you never have to work out how to avoid 2 consecutive days of new dose until you are ready.

[j-e-a-n in reply to PMRpro]

I am going to try this, starting in a couple of weeks. I was reducing by half a mg every week as I haven't been able to reduce as I would have liked due to the stress of my husband dying at Christmas, and also having to do lots of paperwork and moving loads of boxes to be sorted through as I can get chance because of my late husband's cousin being moved from her flat to a home for people with learning difficulties. I had after each reduction several days of pain in my head and also body as I have both GCA and PMR. Anyway I wasn't too bad, but when I saw my Rheumy last week and told him he frowned and said I was coming down too quickly ecause of my circumstances. I was gobsmacked as he has always been one to push me to go harder to reduce I am now down to 10 mgs. He said I must only reduce by half a mg per month, so I am going to try the slow/stop method and see how I go. I have to add that I have also had, for 7 months a problem with my bowels and I have to take a lot of Loperamide at times.

[Rugger in reply to Anna135]

Have a look at the Steroid Taper Web App below. Using this, you can even print out your 'calendar' for the month - it's all done for you!

healthunlocked.com/pmrgcauk...

You'll find the DSNS taper in 3 versions over different numbers of days, as well as others to choose from.

[olive2709]

I use this reduction method my rummy finds most patients cope well. Using calender months went like this for me

1 month 10mg

1month alternative 10mg/9mg

1month 9mg

1month 9mg/8mg

I am from today a 4mg/3mg month think battle with adrenal glands ongoing

[tiasbear in reply to olive2709]

So basically you're tapering 1/2 mg per month. Right now you're at 3 1/2 mg. Were you pain free before each taper?

[olive2709 in reply to tiasbear]

I had GCA so pain levels bit different still get steroid withdrawal body doesn't like this drug. Have a lot of missing muscle and other bits from left side of my neck plus nerve damage so pain as I reduce could be caused by anything under 3 consultants at times Rheumatologist, +2 ENT guys they are thinking of bringing a orthopedic on board next o bliss

[Rokerman]

Hi There - I'm nearly at the same point myself and am following the method outlined by Dorset Lady (I find it better to do what DL and PMRPro tell me, always.....)

The only thing I'd suggest in your place would be to go from 5.0 to 4.5mg - a 1.0mg drop isn't worth risking.

Good luck and let us know how it goes!

[tiasbear in reply to Rokerman]

I agree. I tried 1mg before and it was too much, and had to go back up to 5. Although the pain kind of settled down after about 3 weeks in, so I don't know what that's all about. I get confused if it's steroid withdrawal or PMR? How is one to know??

[Orchid47]

Hi everbody

I have been tapering 0,5mg Prednisone a month and before lowering from 3.5mg to 3 mg had blood tests.

I was very sad to see that ESR had gone up to 35 and CRP to 1.1mg,

2 months ago it was OK, 0,5mg.

My right upper arm, deltoid area was hurting me a bit in the morning, but disappeared after getting up. My knee and varicose veins are hurting me on the other side of the body

. Thought it was due to heat and humidity.

Went up a few days ago to 5mg, no change. Have appointment with Rheumatalog only at the end of November. I have PMR for 3 years now.

Would very much appreciate if your experts like Dorset Lady & Co. could give me some advice.

Thank you all

Orchid47