Got smug about tapering....and bingo!!! - PMRGCAuk

PMRGCAuk

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Got smug about tapering....and bingo!!!

Cairocat profile image
14 Replies

Dropped from 35 mg at the end of August to 8 last week and was thinking "I can do this"....until this morning when I can barely lift my coffee cup. Agh! So disappointing as I counted out 10 mg. Hope that helps.

Okay, still heading out in the snow ( southern BC) to aqua size but will need to put the old loose swim suit on as I can't pull the tight one up. This getting old really sucks!!

Cheers to all as we finish off January !

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Cairocat profile image
Cairocat
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14 Replies
PMRpro profile image
PMRproAmbassador

How much did you drop at one go?

Cairocat profile image
Cairocat in reply toPMRpro

Once I got to 10 I was reducing 1 mg per month, but then hit Christmas so stayed at 9 until January 20th. Not too bad at 8 until....today. My Rheumy has recommended a drop of 1 mg per month.

PMRpro profile image
PMRproAmbassador in reply toCairocat

Under 10mg 1mg is the maximum you should drop but as you get lower that 1mg becomes a higher percentage of the current dose and top experts in tapering (not reducing, that is different) say no reduction should be more than 10% of the current dose. Or you slow it down in another way. But is is winter - and that doesn't help PMR either.

If it is PMR 35mg is a high dose and to have dropped from 35 in August to 8mg now is very fast. There's no "I can do this" in this game - PMR holds all the trump cards and if you try to go a lower dose of pred than you need to manage the inflammation that is being churned out every morning, then the inflammation will build up and cause symptoms again. It always wins.

Cairocat profile image
Cairocat in reply toPMRpro

Thank you for sharing your wisdom yet again. Yes I am getting more and more aware of the fact that I am not in control. This morning was another 10mg dosage and I am thinking I may drop down by .5 when...when I feel better. Hard letting go, but I think I've figured out that I've lost this battle...for now.

Have a great January finish and here's to February!!!

Cheers and thanks again!

SheffieldJane profile image
SheffieldJane

Patience is the name of this game. It’s shocking isn’t it?

Are you going swimming in the snow?

Cairocat profile image
Cairocat in reply toSheffieldJane

Never been really good at being out of control so this is real wake up call. I have always just plowed on, so perhaps time to rest and regroup.

Snow swimming....hmmmm....I don't think so! With that ratty bathing suit I would scare the deer away!

Thanks and enjoy February as it arrives. I am watching your winter weather and thinking....time for spring! Stay warm!

SheffieldJane profile image
SheffieldJane in reply toCairocat

I thought you’d gone all Scandinavian on us. I am sorry you’re suffering. It’s easy to fondly imagine you’ve beaten this thing. Sometimes the Pred dose is just perfect.

Cairocat profile image
Cairocat in reply toSheffieldJane

I’m figuring that part out as well..

I really have no reason to complain as I can just stop and breath clean air and laugh with my grandsons. Also, I can flash down “my mountain” when the wine rack is depleted or if I would like a Flat White from Starbucks.

Yeah..I do .have a “disease/disorder/whatever” that has complicated my life since I retired from being a High School principal in China...but life is still good. I have wonderful memories and incredible friends that touch my life. Don’t think I can demand anything more...just need to balance those drugs!!!

Have a great rest....when you wake you will be bidding January farewell...

Blearyeyed profile image
Blearyeyed

So sorry but bad weather and extra Christmas stress can hit us all .

Plus , many seem to say that ledge below double figures is a hard one.

You know what people regularly say on here , and it is even recorded in the Rheumatology description of the progress off the disease that most patients will have 2 /3 attempts at tapering and flare up again before the disease reaches its end.

It may not be much comfort when you were doing so well but at least you know you are not alone in this.

Wouldn't be surprised that even if you have to increase for a little while when this winter weather comes to a chilly end and Spring breaks in , your tapering and body will get its spring back too.

Take care , sounds like you are fighting a good fight to me , you will get there in the end, hugs Bee xx

Cairocat profile image
Cairocat in reply toBlearyeyed

Thanks Bee. Yes looking towards spring and getting out on my balcony and hopefully will have stabilized enough to dig in my pots and planters. It's comforting to have support from all around the world so thank you.

Enjoy the few remaining hours of January 2019!

PMRCanada profile image
PMRCanada

Disappointing I’m sure, however as others mentioned, you tapered rather quickly. Once I hit 10mg, I had to drop by .5mg, and going down to 9.5 took a few attempts.

Hope 10mg mops up the inflammation so you can resume your slow taper. Enjoy the aqua size class regardless of the bathing suit you wear....it’s my favourite form of exercise, one of the few I can partake in. Love Southern BC btw....lived up North in Smithers for 2 years.

Take it easy until things get back on track. Good luck.

Cairocat profile image
Cairocat in reply toPMRCanada

Yes...I really was on the fast track tapering...but will certainly slow down now. I needed the 10mg again this morning as my wrists and upper arms were really aching...but plan on biting the bullet when we hit Groundhog day....thinking the .5 drop might be a good start. Roll on spring!!!

Thank you for the advice....Smithers eh? We do have lots of snow but it is a lot milder climate.

Cheers

Noosat profile image
Noosat

I did similar action as you did. However, I went further and in that short a time quit prednisone altogether. After less than a week I was back to square 1. As my daughter said," you just can't will this away as you usually do." I started back on 5mg a day, plus Tylenol. Continuing my good diet and plan to go back to the gym. To do that I may have to increase the prednisone, but that is OK. I want to strengthen the muscles that became so weak with the onset of the disease.

Cairocat profile image
Cairocat in reply toNoosat

It really is terrifically annoying to people like us who are used to being in control. Today is not a good one and I went back to 10mg, but tomorrow is another day. Thanks for the support.

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