Arrived at zero: Hello Everyone Emailing just to... - PMRGCAuk

PMRGCAuk

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Arrived at zero

Irldino profile image
44 Replies

Hello Everyone

Emailing just to say that I have very gradually tapered down to zero and all is going well. Thanks to the advice received from this forum I have charted my course steadily and slowly and it appears ' at this point' that I am ok on zero. I know it's early days yet but hopefully this will give encouragement to those who are heading in this direction.

So grateful to have found you all. Geraldine

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Irldino profile image
Irldino
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44 Replies

Congratulations!!!!!!

Celtic profile image
CelticPMRGCAuk volunteer

Wonderful news, Iridino - welcome to club zero!

Irldino profile image
Irldino in reply to Celtic

Thank you. Still hasn't fully sunk in that I have arrived at club zero. Each day thinking how will today be? My body is letting go of pred but my mind is watchful

Celtic profile image
CelticPMRGCAuk volunteer in reply to Irldino

Treat yourself kindly for a while yet and you should be fine. It can take up to a year for all our hormones etc to return to normal after the onslaught of Pred, so no dancing the night away just yet!

Suet3942 profile image
Suet3942 in reply to Irldino

I’m soooo envious.

marylu profile image
marylu

That's fantastic Geraldine, I'm approaching zero, on 1mg very other day. Still very tired but hopeful

Irldino profile image
Irldino in reply to marylu

It's been a very slow journey from 2mg down. Got to 1mg by 20th Feb. 1/2 mg introduced mid March. Stayed on 1/2 for a few weeks then started to introduce zero days mid April. Alternated 1/2 mg and zero for a week. Zero since May 4th. Pacing myself. Went very slowly since Feb as had ruptured Bakers cyst which is healing nicely now but caused discomfort. We had a bank hol here so had 4 days off. Am working full time so the long weekend was a good chance to test things. Soft landing really. Have had knee and shoulder issues over last six months but they are all settling. Weak muscles though and poor stamina are after effects. Diagnosed initially Jan 2015.

Insight329 profile image
Insight329

So happy for you! Slow and steady got you there! Thank you for showing us that it’s possible.

Hindags profile image
Hindags

Congrats!,,,,,..,,!,,,,,,,,!

SheffieldJane profile image
SheffieldJane

Well done Geraldine, 👏👏👏👏👏👏👏👏

Pam47 profile image
Pam47

Fantastic news! Gives us all hope!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

As Celtic says...welcome to Club Zero!

Ta1ch1 profile image
Ta1ch1

Congrats and I hope it lasts for you. My drop to Zero (a quick one ) was advised by my Doctor and I am probably paying for it by my system reverting back to the initial PMR symptoms. So waiting for results of shoulder and chest Xrays and recent blood tests which will hopefully lead to a referral to a rheumatologist. Very bad night last night, no sleep and constant pain. The PMR journey continues.

Irldino profile image
Irldino in reply to Ta1ch1

Sorry to hear. Yes slowly slowly is the preferred way. Doctors don't always listen unfortunately. We need their support but don't always get it.

Footfairy-1 profile image
Footfairy-1

Congratulations!!! It's always an inspiration to hear when someone's made it to zero. 💐💐💐

alice1940 profile image
alice1940

Congratulations!!! I have my foot in the zero door am on 1mg and getting a bit nervous after three years , Congratulations again and good luck Alice

bunnymom profile image
bunnymom

Hurrah for you!!!

Lyn_seaside profile image
Lyn_seaside

Hope all goes well for you. I hit zero but went back on to 5mgs after six months, tapered again and have now been at zero for over a year and feel absolutely fine. Fingers crossed this happens for you too!

Irldino profile image
Irldino in reply to Lyn_seaside

Really good to hear other people's experiences at the zero stage

PMRpro profile image
PMRproAmbassador

Long may it last!!!!!

GerriMc profile image
GerriMc

Well done! That’s fabulous!

Ricketts40 profile image
Ricketts40

Well done in your hitting Zero Iridino. I started my tapering just under 2 weeks ago. I went from 20 per day for 6 days, to 17.5 for 5 days which was fine. The next day I decided to go down to 15 but I also decided to go and do my daughters gardening in this lovey sunshine and really did overdo it. The pains really did creep back in my upper arms and neck so now I am wondering which way to go. I have taken 20 today and yesterday and think I should go back to the 17.5 after the 5 days and then gradually go back to the 15 and rest for the day. Do you agree, or should I completely restart the whole of the tapering again.

Irldino profile image
Irldino in reply to Ricketts40

I know what worked for me but don't feel I have wide enough experience to give advice . I think some of the more experienced Ladies on the forum will help you out. It's easy sometimes to feel too energetic when on higher doses so Rest I think would be important in your case

Rugger profile image
Rugger in reply to Ricketts40

Your taper sounds fast to me. A lot of us use the Dead Slow Nearly Stop (DSNS) taper plan that can take one or two months per step! This way, you can judge how your body is coping with each reduction. Dropping from 20mg to 15mg in under 2 weeks is probably as much to blame for the pains, as overdoing the gardening! One rule of thumb is no more than 10% reductions - you've dropped 25% in 2 weeks.

Have a look under 'Topics' on the right of this page - choose 'Tapering steroids' and then scroll down to 'Steroid Taper Web App' where you'll find many different taper schedules, including 3 versions of the DSNS plan.

Pacing ourselves is also very important and learning to accept a 'new normal' for our activities. Have you looked at DorsetLady's advice for newbies?

Me: PMR 2 years. 1 flare at 12 months and another at 21 months. Lowest pred 4mg - now on 8mg.

PMRpro profile image
PMRproAmbassador in reply to Ricketts40

Pred won't help the DOMS (delayed onset muscle soreness) due to overdoing it physically. That must be managed by pacing and resting appropriately - basically half an hour work needs the same as rest from that activity and even then you can't do a lot!

What sort of tapering regimen have you been given? 2.5mg every 5/6 days is FAR too fast. You aren't reducing to get off pred, you are reducing to find the lowest dose that given the same result as the starting dose did where you will stay for some considerable time. The median duration of PMR is 5.9 years - only fewer than 20% get off pred in under 2 years.

You should usually stick at the starting dose for 3 to 4 weeks until your symptoms are stable. Then you reduce in small steps to find that dose - no reduction step should be more than 10% of the current dose so at 20 down to 15mg 2.5mg is pushing it. After 15mg 1mg at a time is far better - not causing a flare saves the amount of pred in the long term.

So I'd go back to 17.5mg and stick there for a couple of weeks. And don't do the gardening - or if you do, avoid the heavy stuff and don't do it for long.

Ricketts40 profile image
Ricketts40 in reply to PMRpro

Thanks PMRpro. I was going by a taper which I found on HU where it advised tapering - take a new dose for 1 day then the old dose for 6 days followed by another new dose for next day followed by 5 days the old dose etc, etc. My GP advised lowering by 5 Pred but I insisted on 2.5. I think I will stick to what you suggested in your last paragraph for a couple of weeks and continue with that throughout the year. Thanks for all your replies everyone.

PMRpro profile image
PMRproAmbassador in reply to Ricketts40

That's right, that's the Dead Slow Nearly Stop approach I developed some years ago. But have you understood what it means? It doesn't sound like it from your last post.

You take the dose you are heading for for 1 day, the old dose for several and always decreasing:

One day of 17.5mg, 6 days of 20mg.

One day of 17.5mg, 5 days of 20mg.

One day of 17.5mg, 4 days of 20mg etc etc.

It should take about a month to get from every day 20mg to every day 17.5mg. You don't have to start with 6 days between, you could start with 4 days, then 3 days, 2 days and then alternate old/new. But you must go slowly enough for YOU.

Then you start over again with 15mg as the new dose, 17.5mg as the old dose in between the days of 15mg.

If you dropped from 20 to 15mg in a couple of weeks and then gardened - no wonder you hurt. There will be both DOMS and steroid withdrawal rheumatism to contend with.

Ricketts40 profile image
Ricketts40 in reply to PMRpro

PMR thanks SOOOOO much for explaining it to me, I now understand it. As said before I will follow your advice to the letter. Great.

dartmoorlass profile image
dartmoorlass

Great news Iridino, hope to join you before too long. Celtic's words of wisdom .....be gentle and take it easy for a while ... sound like good, helpful advice. Take care and enjoy the return of your freedom.

Jackoh profile image
Jackoh

Great news Irldino! Long may it last !!

Rosbud profile image
Rosbud

Well done x

markbenjamin57 profile image
markbenjamin57

Well done Geraldine! :-)

It's good to hear another Good News report in between many from others who are struggling on the PMR / GCA Journey. And, how the good advice from this community helps many of us in the process.

I'm sure this gives others of Us Lot the motivation to 'keep-on rolling with it' - and also some Hope and encouragement that there CAN be light at the end of the PMR /GCA tunnel.

Best wishes and hopes for your continuing membership of PCZ (Pred Club Zero). I'm in a similar place to you, and keeping my fingers crossed.. ;-)

'Uncle' MB :-)

May10 profile image
May10

Well done. I am on 3.5. Hope to get there one day!

JulianJ profile image
JulianJ

Congrats, looking forward to joining you in a year or two.

SusanEleven profile image
SusanEleven

Huzzah! It gives hope to all! Congratulations.

optermist profile image
optermist

hello Geraldine and congratulations on becoming a member of club zero..we all know how long this journey takes and can't quite believe it if and when we get there...sending loads of good wishes for your continuing journey. I have been seven weeks now in club zero and keeping my fingers crossed 🤞.

Irldino profile image
Irldino in reply to optermist

Fingers crossed too!

ThePainPrincess profile image
ThePainPrincess

So wonderful, congratulations! I am tapering from about a year on 20mg for severe RA, now at 7mg. I have had three episodes of bad nausea, every 5 days or so, not related to food. I also got terrible lower leg pain, then it goes away after a few days. I am tapering 1mg per week. Anyone having nausea with tapering? If yes, when does it stop? Thanks so much! Be good! Penny

zoey12 profile image
zoey12

good luck hope all goes well x

PMRpro profile image
PMRproAmbassador in reply to zoey12

Did you notice this post is over 4 years old?

Irldino profile image
Irldino

I see that this post has popped up again. Still in club zero and feeling good. Knees, especially right knee, carrying fluid which is frustrating but all else tip top.

PMRpro profile image
PMRproAmbassador in reply to Irldino

That is really good to hear! You know - a NEW post saying you got to zero and a bit of the story would be briliant, New people so rarely hear the longer term good news stories because Club Zero people tend to ride off into the sunset ...

Irldino profile image
Irldino in reply to PMRpro

Good idea. I will do that. I dip in here now and again. Ye are all old friends and were such an important support to me throughout those steroid years

PMRpro profile image
PMRproAmbassador in reply to Irldino

Thank you!

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