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]

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?

[Hidden]

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!

[Hidden in reply to Hidden]

I know that dance!

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

💃💃💃

[Lin6075 in reply to Hidden]

Unfortunately for me it is the prednisone 3 step

Thanks for the laugh

[AmberAliona in reply to Hidden]

Me too

[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.

[Hidden in reply to Hali12]

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

[Hali12 in reply to Hidden]

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

[Hidden in reply to Hali12]

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

[Hidden in reply to Hali12]

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

[Hali12 in reply to Hidden]

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

[Hidden 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.

[Hidden in reply to Hidden]

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

: o

[Hali12 in reply to Hidden]

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 in reply to Hidden]

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.

[Hidden in reply to Hali12]

Good.

[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 in reply to Freddie01]

You have done well!

[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 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 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

[Hidden 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.

[Hidden in reply to Kcartney103]

Woooooo Hoooooo! Good luck!

[Hidden in reply to Freddie01]

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

[Freddie01 in reply to Hidden]

Early days so will keep you posted if anything changes ☺️

[DorsetLady PMRGCAuk 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 Ambassador]

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]

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.

[Hidden in reply to Ta1ch1]

True Dat.

respect.

[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 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

[Hidden in reply to mostyn]

Good on you!!!!

[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]

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

[Hidden in reply to Irldino]

WOW!

[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]

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.