Get to reduce!!!

[lvaughn]

Went to rheumatologist,he said blood work looked good so I get to reduce from 10 to 7.5 for 1 month then 5 then by 1. He said it would take 6 months! Glad this is how he wants me to reduce!

[piglette]

Hi Ivaughn, glad you got to 10 mg OK. After that you need to take things more slowly. Trying to get to zero in just over six months when you were only diagnosed in December is being rather over optimistic. PMR tends to be quite a long term illness lasting normally at least two years although some people do have it for less time. Good luck anyway.

[Mary63]

Really! I hope that works for you. But....based on all I have read on this forum that plan ain’t going to work. Too quick...too much...too soon... maybe you will be the one who is a game changer. I do hope so.

Mary

[DorsetLady PMRGCAuk volunteer]

HI

Are you glad really! Let hope it works!

[Hindags]

I really hope this works for you. Please let us all know how it goes. I know that by ten I had to go more slowly than that. But everyone is different.

Please don't try to be too stoic if you start having a return of symptoms. From what I've experienced, going back up a little if that happens and staying there until things stabilize can avoid having to increase the dosage much further.

You seem to have a great attitude. Here's hoping for a good outcome.

[Hidden]

I wish you the best of luck with this, seriously, I do. .... but as one who has (barley) lived through an aggressive, failed taper plan, let me just say, "It sucked." I went from 60mg, to 45 mg, and thought I would die... had to be bumped up to 80 mg!!!! Now after 3 months I'm back to 60 mg where I started. Full Circle. : ( I hope you have better luck)

[Hidden]

I hope that was a sarcastic rather than accepting tone to your message? I have been down to 8mg 5-months after dx..full return to symptoms with higher blood markers. Eventually back to 15 and now 21months in just going from 10mg to 9mg using dsns. If that doesn't take I will be back on 9.5mg doing 0.5mg dsns. I wish you the very best of luck..because it's always encouraging when a positive experience of tapering rears its head. 🌻

[Sandy1947]

Hope your plan works and you don’t join the roller coaster club! Remember, tapering is not a linear experience for many of us.

[PMRpro Ambassador]

Like others - I hope it works for you. But I'd say it is far more likely you will end up with a flare. From 10mg the reductions need to be slower - because you aren't heading relentlessly to zero, you are looking for the lowest dose that gives the same result as you have now. Going in too big steps increases the likelihood of missing the dose you are looking for.

And nothing has changed of the real illness - an underlying autoimmune disorder. You will need some pred until it has burned out and gone into remission. Which happens in less than a couple of years for only a few - most take anything from 2 to 6 years.

[SheffieldJane]

In a nutshell PMRPro!

Take care Ivaughn - you get nothing for strength of character, stoicism and bravery in this game. The tortoise always wins.🐢🏆

[Bethy]

I really hope this works for you Ivaughn, but from personal experience and other suffers I am in contact with that is a big big drop. Slowly slowly for me was the best method. Good luck and take care x

[Maryis80]

Interesting how different doctors vary. When I saw my new GP this week (second visit) she was concerned that my blood levels were up a bit although I was feeling much better and my hands are fine, which was the main problem. She has put me up to 20mg a day for a month, from the 14mg I was taking, then to reduce by 1mg every four weeks. I said it will take a long time, but if that is what is takes, so be it.

[Soraya_PMR in reply to Maryis80]

Whether you needed the jump up to 20 I don’t know and won’t comment. However the 1mg per 4 weeks may sound slow, but in real life won’t be. My GP had me reducing from 20 to 15. It didn’t work. Later my rheum wanted me to drop by 2.5, that didn’t work. So my dose was repeatedly having to jump up and start again. I now drop 1mg a month, and finally I’m getting somewhere (down to 10). Plus I don’t experience much in the way of steroid withdrawal pains by dropping only 1mg. Mostly increased fatigue and the need to have extra daytime naps, but no nasty pain.

I shall be considering how to drop from 10 in a couple of weeks.

[paulst955]

You will probably be back on here soon telling us you are in agony. That's way to fast a drop. Best of luck you will need it.

[lyndamcw]

I started on 60a year ago then got down to 10 then 8 but I seem to have a problem getting to 7....it does seem a big drop to5 but you know we are all different and you can but try .good luck

[xdbx]

Good luck. I hope it works for you. It does sound way too fast. I started on 15mg 18 months ago and went to 12.5 after 3 months, then 10 after another month then down by 1mg per month from there. It was tough and I felt dreadful but I got to down to 6. I was looking, very miserably, at going down to 5 and hen I had a massive flare and had to go back up to 15. Square 1 but actually worse because I felt less good than I had originally on that dose. That was last July. I’ve just managed to get down to 10 again by DSNS tapering method and there’s no way I’m going to rush it this time. Just not worth it. I’m learning to be patient. The PMR is in charge here, not me and not the medics! Please be careful

[skibarski2]

Hi Ivaughn

I dropped from 10mg to 7.25 2 weeks ago, first drop in 5 months, like you, I was told my blood markers were good at last results. I was happy to be dropping at last. For 3 days all seemed to be going well. Then some of the stiffness came back, same with my neck & shoulders, but I was sure it would all settle down in a few days, it did not, I got more & more pain, burning that was excruciating, I could barely get myself out of bed & walking hurt like hell.

I got no sleep at all on Tuesday night or Wednesday nights, so I decided to up my dose back to the 10mg on the Thursday morning, iI take my steroids @ 5am, which has helped me feel less stiff & able to get out of bed on my own, & able to function at least for half the day before The stiffness stars to settle in again..

I called the surgery to speak with my doctor on Thursday morning..

I described everything that had been appending with me, since the drop to 7.25. I could not walk at All on Wednesday, Tuesday I was on crutches, so I knew I was going backwards in a BIG way..

She told me to stay on the 10mg for a month, made me an appointment for more blood work to be done & also my next appointment with her. TODAY, I am able to get out of bed on my own again, able to walk, able to DO small things... She said herself that my taper will have to be no more than 1mg per month from now on, So long as that works for me..

So don’t feel too bad if you start going backwards on this drop. If it does work for you, GREAT!

But I have to agree with others here that is too big a drop...

Kate

[PMRpro Ambassador in reply to skibarski2]

"She said herself that my taper will have to be no more than 1mg per month from now on"

Shame that hadn't been her mantra before telling you something that almost no reduction plan in the medical literature on the internet suggests. One even says that reducing at more than 1mg/month is predictive of a flare.

[skibarski2 in reply to PMRpro]

I know she was keen to get me off the steroids, So was glad that she finally saw sense & said that 1mg per month would be the way forward from now on... I have hated the past couple of weeks as I felt been more ill & was in so much more pain than I was when I strated with this PMR.. So if all goes well from next month, 10 more months, & I shall be free of this condition at least...hmmmm Not holding my breath in thanone either...

Kate

[PMRpro Ambassador in reply to skibarski2]

The PMR does not depend on the taper - the taper depends on the PMR. You can reduce how you like - but as long as the underlying cause of the symptoms we call PMR is active, you will need some pred. No ifs or buts - the underlying activity will cause symptoms...

[9lives]

Hi there,

Well I hope things do go well for you, but like the others on this site, i have to say it’s taken me 15 months to get from 11 mg down to 5mg.

So please take things slowly. And listen to your body. I have had this PMR for almost 2 years now, in May, and it’s actually gone quite quickly when I think about it.

And if there is one thing have learned from this amazing site, it’s that slowly slowly catch a monkey 🐒 xx if you are lucky

Good luck to you, let us know how you go.

Regards

Carole

[navejasjoe]

My wife's first rheumatologist tried that some kind of reduction with my wife and she was soon back to ground zero - all the symptoms came back even though her blood work was perfect - showed no inflammation. Her new rheumy told her when she is ready to reduce she will cut her by 1mg at a time.

Joe