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
Congratulations!!!!!!
Wonderful news, Iridino - welcome to club zero!
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
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!
That's fantastic Geraldine, I'm approaching zero, on 1mg very other day. Still very tired but hopeful
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.
So happy for you! Slow and steady got you there! Thank you for showing us that it’s possible.
Congrats!,,,,,..,,!,,,,,,,,!
Well done Geraldine, 👏👏👏👏👏👏👏👏
Fantastic news! Gives us all hope!
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.
Congratulations!!! It's always an inspiration to hear when someone's made it to zero. 💐💐💐
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
Hurrah for you!!!
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!
Really good to hear other people's experiences at the zero stage
Long may it last!!!!!
Well done! That’s fabulous!
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.
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
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.
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.
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.
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.
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.
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.
Great news Irldino! Long may it last !!
Well done x
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
Well done. I am on 3.5. Hope to get there one day!
Congrats, looking forward to joining you in a year or two.
Huzzah! It gives hope to all! Congratulations.
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 🤞.
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
good luck hope all goes well x
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.
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 ...
Zero Pred
Day 2 at Zero Prednisone and counting
Reducing to zero.
ZERO. with a million thanks
