I've received the following PM from HU member optermist who intended it as a New Post and asked me to do the honours on their behalf.
Message content:
"Club Zero
Hello all just wanted to say that I took (hopefully) my last 0.05mg of pred on 30th March (2weeks ago) and am doing good so far and looking forward to it continuing. I am so happy to now belong to Club.Zero along with Dorset Lady Mark Benjamin and many many more out there I'm sure..Started on 60mg pred for GCA Jan 2015 and thought that I'd be off the pred within a year (silly me) but I eventually learnt the rules - I wasn't in charge - my GCA was. I've had my share of the side effects of pred and often thought that I wouldn't get to belong to Club Zero..(still going to keep my spare pred close though). I read this forum almost daily even though I've not posted hardly at all I just wanted to say a big thank you to the aunties and members out there who are also on the trail to Club Zero. I used the DSNS method for tapering".
Hope this makes sense - responses to optermist please!
Best wishes
MB (on behalf of optermist)
Written by
markbenjamin57
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😂 not dressed yet 😲 I could spend all day thinking about getting dressed and then maybe just maybe do it next day..not in any rush these days either, that's the one thing I really learnt on my journey (well after the first year went by) best wishes on your trail to 'Club Zero' and thanks for your kind words.
If you reply to any response from here, we can then contact you direct, rather than go through Mark. Or go to home page, there you find your name and the question “What’s on your mind?” - tap that and it will take you to new page where you can write your question.
Well done...and welcome. Just remember it does take a while (for some up to a year) to get everything back to normal after Pred.
The aches and pains of life come back, so don’t assume that every “new” twinge is GCA, just be rational - you know what GCA feels like. I kept a few tablets “just in case” until they ran out of date...but fortunately never needed them!
Hello D/L and so wanted to share where I am at right now belonging to the new club zero (maybe it won't last and my old friend GCA will remind me of that its still in charge) but while it doesn't I will carry on smiling and taking each day as it comes. Definitely will be keeping my eyes open regarding symptoms returning and know that I have inherited a few aches and pains that I didn't have at the start of this journey but there again 3yrs on I still have my sight and for that I will always be grateful for pred.I know that it can take up to a year to come back to normal because I wanted to start giving blood again but they won't let me till I've been off Pred for a year. Thanks for great advice as always..brilliant forum...kind regards
thank you..don't know how I would have tapered without using the DSNS method and only found out about it because of this great forum..it takes much longer but for me it worked and my doctor was an advocate of it also. Kind regards..
hi Joyce it's Dead Slow Nearly Stopped method (DSNS) whereby you reduce each time by a very minimum amount that works for you. I'm no good at explaining it properly but if you stay patient I know the professionals and experienced members will come on to help you.
Thank you so much, you have explained it perfectly. I had reduced to 3mg per day but, 2 days ago, I was put back up to 5mg. Until I found this Page I was completely in the dark. A grateful thanks to everyone x
Hello Pastit...no this is a genuine chat from me to all members just wanted to share my journey so far..mark kindly put this on his page for me when I totally messed up trying to do it (still walking round with Pred head even though not taking them) 😂😂
WOW!!! 3 years only of GCA! You sure have done well! Hope it continues.Wait a minute. Have just seen post from Pastit...is this a delayed April fool? Spelling optermist makes me wonder. Hmmmmm. Apologies if I am on the wrong planet..................
hi karools16...no no wind up or delayed April fools day prank..all genuine (never was any good at spelling though) 3years and 3 months (whose counting..lol) and apologies accepted...
I am so very pleased for you. Like you I was diagnosed with GCA in April 2015 and had a brief membership in Club Zero in October 2017. I am heading back that way and hope to reapply in the summer, assuming I meet their requirements!
Morning allykat -similar to me-started Pred May 2015, brief period of Club Zero last August, at 1mg daily now but hoping to renew my membership permanently soon
hi allykat..lovely to know you were in club zero for a while and working your way to get back in..how long were you a member as that's my fear 😱 (might be blowing my own trumpet too soon) wishing you lots of luck on your re-entry.
I was only there for three weeks and then PMR kicked in I suspect it was probably lurking in the shadows all along. Caught it quickly and slowly reducing. Hope this helps.
sorry the dreaded PMR set in and set you back for a while...I hope it doesn't come knocking on my door wanting to join the party (but you never know who's going to gate crash in) at the mo I'm feeling good.Sending lots of good luck 🍀 on your path to club zero.
hi Alice you've got me tingling remembering how excited I felt at being on 1mg...so close so far...tempted to just stop...but no stuck with the DSNS taper...1mg (5weeks) then 1mg 1day 0.05mg next day (5weeks) then 0.05mg daily (5weeks) then another 5 week to gradually bring down to last 0.05 tab...lost lots of half tabs on my taper 😂 cat quite hyper though...I didn't experience any unusual pains & aches whilst tapering this way..it worked for me. Sending loads of good luck for your final tapering to club zero.
Thanks for your advice l didn't know there was 0.5ml tablets so l will do what you have done and slowly slowly get to zero hopefully l don't have much pmr pain now it is my osteoarthritis that has come back the steroids have masked it for so long thank you again for the advice will be joining you in club zero soon Alice
You get 5mg and 1mg plain pred tablets which you can cut with a pill cutter to get 2.5 and 0.5mg doses to combine to get all the intermittent doses.
In the UK you get 5, 2.5 and 1mg gastroresistant coated tablets which MUST NOT be cut but which you can combine to get the dose you want down to 2mg. If you wanted to do 1.5mg you would have to cut plain pred tablets or alternate 1 and 2mg doses. That is why the DSNS approach was developed originally - so that at the lower doses you could spread a relatively large percentage change over several days:
Thanks for your advice about the 1mg tablets l will be cutting to get a half ( just been trying to cut one in half oh what a mess powder and bits all over l have a good pill cutter too so it's practice makes perfect ! Thank you again Alice
I have a cheap pill cutter. Actually it was free, given to me by the pharmacist, with a drug company logo long since worn off. Just as good, or bad, as any other. For a long time I would get one good half and one pile of crumbs. Then one morning I held the cutter vertically in the air and gently snapped it shut and lo and behold, two neat halves (although admittedly not exact halves, near enough). So I assume by eliminating the vibration from closing the cutter on the kitchen counter the pill is less likely to shatter.
hi Alice if I'm reading your reply right(but I may not be knowing me) then I think you thought I was getting 0.05 tablets of pred...I was cutting a1mg tab in half each day as don't think you can get 0.05 tabs (may well be wrong there) and it is fiddly,time consuming,and I lost some on the way 😂 but got there in the end...hoping your osteoarthritis doesn't cause you to much pain and trouble and yes please take it slowly slowly from here...I know that every time I dropped 0.05mg down to the next lower dose I would pay for it next couple of days and then it would pass...I wouldn't have kept reducing though if it didn't..as you know say 3 years needs help not to rock the boat so to speak...another few months to reach club zero will be worth the wait.
😂😂 It's a wonder anyone knows what I'm talking about (I know I am very good at confusing myself most of the time) hence Mark ending up putting my post on his page yesterday as I couldn't do it...It's much easier for me to say that I was just cutting up 1mg tablets in half each time to drop by half a tablet (a lot of half tablets found there way on the floor too in the process 😲)It's so easy for me to get a lot wrong (wish it was just a typo error) thanks for bearing with me though 😉
definitely...you'd think that being on such a low dose wouldn't make much difference but it does and I couldn't have stayed with the tapering otherwise...keep cutting the tabs 😊
But the halves don't have to be exact - it is less than 1mg which is the main thing!
Sometimes it is worth investing in another pill cutter - mine is fine, my husband's defeats me entirely!
Pills that are convvex on the surface are easy - lay them on a hard surface and press firmly with your thumbs on opposite sides. They should snap into 2.
Well done you - I should think you feel pretty good with yourself to have, at last, joined Club Zero (great name for it). It gives me hope I am now nearly two years into my GCA journey, down to 8mg, still struggling with the effects of tapering even doing the Dead Slow method, roll on another year!
hi Sho-Sho great your getting there I was about there(I think) at the 2 yr stage and didn't feel it would ever happen especially as we're all tapering a lot slower as we try to get lower...I am lucky only was dealing with GCA so not having to deal with PMR as well has been a bonus (hope that one doesn't want to pay me a visit at any time) sending lots of luck for your journey to club zero.
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Four weeks at club zero and no more Afib issues
Going from 5 to zero - wish me luck!!
