I read about people going down then up on pred. I... - PMRGCAuk

PMRGCAuk

20,119 members37,703 posts

I read about people going down then up on pred. Is there any record of a person going straight down to zero without having to increase by 5?

janimaths profile image
36 Replies

I read about people going down then up again on pred. Is there any record of a person going straight down to zero without having to increase by 5?

Written by
janimaths profile image
janimaths
To view profiles and participate in discussions please or .
36 Replies

I wish it were me!

I'm sure someone has done it, but I too have seen a lot of "two steps forward, one step back." Or in my case, "one step forward, and two steps back."

Hahahahahahhahaha!

in reply to

I know that dance!

The “prednisone 2 step”, doing it right now.

💃💃💃

Lin6075 profile image
Lin6075 in reply to

Unfortunately for me it is the prednisone 3 step

Thanks for the laugh

AmberAliona profile image
AmberAliona in reply to

Me too

Hali12 profile image
Hali12

Yes that was me. I did it. I went from 50mg to cold turkey. Meaning taking none for the 3-4 days of no prednisone. WOULD NOT RECOMMEND ANYONE TO TRY THIS. NOT FUN.

in reply to Hali12

Are you ok and back on at least some pred now?

Hali12 profile image
Hali12 in reply to

Yes but it’s not working going to call doc on Monday first thing

in reply to Hali12

Good. It's important especially if you are being observant at the moment. Please keep in touch.

in reply to Hali12

....but only 4 mg, correct? Or was that a typo and it is 40mg?

Hali12 profile image
Hali12 in reply to

yes it is 4 mg. it's called a medropack i think. where u take the first dose all at once. Then taper down. I started that on this past Friday. It's a 6day pack. NOT HELPING

in reply to Hali12

It's hardly surprising ...they need to reassess your dose immediately. Criminal letting you suffer. 50mg to 4mg is a nightmare scenario.

in reply to

Seriously... 50 to 4!!!!!!

: o

Hali12 profile image
Hali12 in reply to

Good morning yeah now you see why I’m such a mess. No improvement. I’ll let you know what the doctor said about the MRI result.

Hali12 profile image
Hali12 in reply to

Good morning yeah now you see why I’m such a mess. No improvement. I’ll let you know what the doctor said about the MRI result.

in reply to Hali12

Good.

Freddie01 profile image
Freddie01

Hi Janimaths I have been one of the lucky ones having just reached 0 this week. Started on 70mg October 2016 after being diagnosed with GCA. My CRP and ESR markers are low. I am not totally pain free but with the help and support of my rheumatologist I am following her advice but mindful this could change.

karools16 profile image
karools16 in reply to Freddie01

You have done well!

Freddie01 profile image
Freddie01 in reply to karools16

Thank you. I have struggled at times and whilst I am usually a very positive glass always full type of person GCA tested me both mentally and physically I know things can change in an instant so I take each day as it comes knowing I have a good support network for which I am truly blessed.

Kcartney103 profile image
Kcartney103 in reply to Freddie01

I am at 4mg anticipating 0 shortly. I was curious to see if I would be symptom free. How is your rheumatologist helping you handle your symptoms Freddie01? I also have spinal stenosis and some arthritis in my hips so not sure if the achiness in my legs is due to PMR or other issues.

Freddie01 profile image
Freddie01 in reply to Kcartney103

My rheumatologist referred me to an Endocrinologist last October who in turn arranged for me to have the Synacthen text to check if my adrenal glands had woken up I think I was in 10mg preds at that stage, the test showed they hadn’t and e suggested I stick with what I was on or continue with the reduction . I had chronic fatigue but decided to continue with the reduction. Over the past months I gradually got down to2mg ever other day. I did have some neck shoulder and pain in my head, they week before last I had another test which showed my glands had woken up, e Endocrinologist rang me last Monday and suggested I increase the preds to 20mg but before doing so he asked my to go to the hospital and have a blood test,. I have a phone call from my t dept requesting I go and see her last Thursday she reassured me my bloods CRP and ESR were both good , was pleased I didn’t increase and told me to s completely. I have every faith in her which helps

in reply to Freddie01

I wouldn't give a monkeys with the bloods if I had symptoms coming back. If you were on 20mg then they should be low. The bloods can lag behind symptoms often by weeks. I have my fingers crossed but if your symptoms don't go you need to reassess. Good luck.

in reply to Kcartney103

Woooooo Hoooooo! Good luck!

in reply to Freddie01

WOW! Congratulations!!!!!! ZERO!!!! Wooooooo Hoooooo!

Freddie01 profile image
Freddie01 in reply to

Early days so will keep you posted if anything changes ☺️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Well yes...and no!

I never had a flare during my journey from 80mg to zero (4.5years); but my ESR was raised at one time - now I know due to stress over my late husband’s health.

My GP who had initially misdiagnosed me resulting in sight loss in right eye, understandably panicked slightly and insisted I up my Pred. But as I say no GCA symtoms whatsoever!

So yes it is possible. GCA been in remission and off Pred since Sep 2016.

PMRpro profile image
PMRproAmbassador

There have been people on the forums over the last several years who have used one of the slow reduction approaches and never had a flare but reduced steadily to zero.

Ta1ch1 profile image
Ta1ch1

Hi. I did that and regretted it. I'm pretty new to this PMR stuff but I have learned quickly that you need to respect what Pred is and how it can screw up your progress if you don't follow the rules.

in reply to Ta1ch1

True Dat.

respect.

mostyn profile image
mostyn

I started on 15mgs April 2017 and am down to 2 mgs going down 1 mg each month

I have had no problems with this reduction

Pym1 profile image
Pym1 in reply to mostyn

That’s good to know, thanks. I started similar journey in October last. Now alternating daily between 6/7mg. Hoping to stay on 6 for two weeks at end of the month then start alternating 6/5 for a fortnight, etc. Not without occasional discomfort, but seem to be getting there.

My heart goes out to those who seem to have severe long term pain. Think I’m being lucky.

Pym1

in reply to mostyn

Good on you!!!!

jannie21 profile image
jannie21

I went to zero but I did it by slowly tapering over 2+ years. I had PMR and started on 15mg per day. Hope this helps you, but you must taper very slowly.

Irldino profile image
Irldino

I never had a flare. Reduced very slowly especially from 2mg down. Now two weeks at zero. Doing ok. Diagnosed early 2015

in reply to Irldino

WOW!

janimaths profile image
janimaths

Thanks people for all your experiences. I am currently defying my nice rheumatologist by not rushing down on his quick reduction idea. The only way I could get down last time was slowly, slowly. Met a new nippy young GP, lacking in heart, who really didn’t want to refer me for a bone scan, despite me having been over 7 mgs pred for a while, going on 4 years out of 7. A wrangle ensued but with huge reluctance she agreed. I broke both ankles 20 months ago in a car park pot hole. Changed my life. I am trying to protect my bone density this second time round. This is a definite moan but I feel better after airing it. Thanks listeners.

sondya profile image
sondya

I have. After GCA. Well, almost. Stuck to plan, endured moments of steroid withdrawal after each drop but didn't get fooled into increasing dosage. I completed the course (13 months) but as my rheumatologist hasn't officially given the nod, my GP wants me to stick to the final 1mg a day until he does. So low, it's not doing any harm to keep going.

You may also like...

Do I have to go up to 60mg pred again?

60 mg pred in July 2021. Even though I had many side effects from steroids, I did not have any more...

What is considered a safe amount

prednisolone long term , I’m down to twelve but finding it hard to go any lower

Rheumotologist wants to change from prednisone to methotrexate...

I’ve had PMR since November 2017. I’m down to 7 1/2 mg. I did go down to 1 mg but got terrible...

CGA - tapering from 20Mg after 4 weeks.

diagnosed with CGA end of July 2023. Have tapered down from 60Mg to 20mg. Have been on 20 mg for 4...

When see weight loss with pred reduction?

pounds when I started on it. I am down to 7 1/2 mg. Did any of you have the pounds \\"melt off\\"...