The Lighter Side: Club Zero - Forwarding message from 'optermist'.. :-)

[markbenjamin57]

Greetings all

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)

[SheffieldJane]

That is great progress for optermist in record time! Very encouraging. I really must get dressed! 🙄

[optermist in reply to SheffieldJane]

😂 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.

[tgca in reply to optermist]

Tomorrow... one of the greatest labour-saving devices of today!!!

[optermist in reply to tgca]

😂😂😂😂😂😂 how true..

will defo be remembering that one...

[DorsetLady PMRGCAuk volunteer]

Hi optermist,

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 I kept a few tablets “just in case” until they ran out of date...but fortunately never needed them!

[optermist in reply to DorsetLady]

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

[HeronNS]

optermist I hope this reaches you. Well done!

[optermist in reply to HeronNS]

thank you..still can't quite believe it myself..might be blowing my own trumpet too soon 😂 hope not though...kind regards.

[Insight329 in reply to optermist]

Congratulations! I’m thrilled for you!

[optermist in reply to Insight329]

thank you 😊 for your kind words and will keep my 🤞 that I can stay in this club.

[PMRpro Ambassador]

Well done optermist - and thanks for the vote for DSNS!

[optermist in reply to PMRpro]

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..

[Joyce1952 in reply to optermist]

What is the DSNS method?

[optermist in reply to Joyce1952]

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.

[Joyce1952 in reply to optermist]

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

[Chrob]

Love, love , hearing about club zero , the one we all want to join .

[optermist in reply to Chrob]

thanks Chrob...reading Mark Benjamin post about it said it all for me..I just hope I can stay in this new club..😲 kind regards

[Hidden]

Ha Mark, is this genuine, or are you up to your normal tricks 🤔😉😎

[optermist in reply to Hidden]

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) 😂😂

[markbenjamin57 in reply to optermist]

Phew, thanks optermist!

[Hidden in reply to optermist]

Well in that case, welcome to the club, but we have to be careful with a guy with a teddy bear 🙄😉😎

[markbenjamin57 in reply to Hidden]

I have no knowledge of, and have never kept or developed any kind of 'teddy bear'. It was someone else - Fake News!!

[Hidden in reply to markbenjamin57]

Great answer, I must be living in a parallel universe 🤗☺️

[SheffieldJane in reply to markbenjamin57]

Called Tedski so the dastardly plot thickens.

[Hidden in reply to SheffieldJane]

Ha, the bear changes its name to suit the occasion. 😜😎

[SheffieldJane in reply to Hidden]

Or the bearssssss!

[Hidden in reply to SheffieldJane]

Yes, there must be a whole family of them 😍🤗😉

[markbenjamin57 in reply to SheffieldJane]

This is all too much to bear.... ;-/

[markbenjamin57 in reply to SheffieldJane]

Tedski 1.. could there be others?...

[PMRpro Ambassador in reply to markbenjamin57]

Daddy Bear, Mummy Bear, Baby Bear...

[markbenjamin57 in reply to PMRpro]

..Grrrrisly Bear... ?

[Hidden in reply to markbenjamin57]

Panda Bear, Polar Bear..... this like doing my grandkids homework

[markbenjamin57 in reply to Hidden]

Yep Pete, just grin and bear it...

[SheffieldJane in reply to markbenjamin57]

I can’t bear it!

[markbenjamin57 in reply to Hidden]

NOOOO Pete! It's 100% kosher.

Oh, this is the problem with being known as a wind-up merchant!

[Hidden in reply to markbenjamin57]

If it's 100% kosher that's good for me, only asking 😀😎

[karools16]

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..................

[markbenjamin57 in reply to karools16]

OMG karools, what have I started here?! ;-/

For the record: optermist is real, as is my Post on their behalf. This is NOT a wind-up!

MB

[karools16 in reply to markbenjamin57]

I'm falling about laughing at my own stupidity. I don't do things by halves, so both big feet in it. Soooooooooooooo sorry, Mark.

[markbenjamin57 in reply to karools16]

No worry karools, seriously!

[Hidden in reply to markbenjamin57]

Don't trust him folks, he's at it again 😉🙄😜

[optermist in reply to karools16]

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...

[karools16 in reply to optermist]

1000 apologies, but with Mark, you just never know! Even Pastit thought something fishy. Anyway, good on you that you are also in that elite club.

[optermist in reply to karools16]

just hoping I get to stay here 🤞

[Hidden in reply to optermist]

You can but it's a mad house sometimes 🤣

[allykat in reply to optermist]

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!

[Maisie1958 in reply to allykat]

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

Well done markbenjamin57 and optermist

[optermist in reply to Maisie1958]

Thank you Maisie and lots of good. luck being sent for your re-entry to club zero.

[markbenjamin57 in reply to Maisie1958]

Thanks Maisie..

[optermist in reply to allykat]

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.

[allykat in reply to optermist]

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.

[optermist in reply to allykat]

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.

[tgca in reply to allykat]

We'll get there allykat !

[tgca in reply to optermist]

Congratulations!!!

[optermist in reply to tgca]

thank you 😊 hope I'm still smiling up the road along with D/L MB and many more trailblazers who have already got there.

[markbenjamin57 in reply to optermist]

Trailblazers? More like Snailblazers for many of us with PMR..?!

[optermist in reply to markbenjamin57]

😂😂 that's one baby I don't want to end up rocking PMR....lol..

[optermist]

and if I knew what I was doing in the first place then....😊

[markbenjamin57 in reply to optermist]

Don't worry, it can happen to any of us optermist..

[Jackoh in reply to optermist]

Looking forward to the day I can join the club zero- well done optermist!!!

[optermist in reply to Jackoh]

thank you Jackoh...fingers crossed 🤞 I stay in it and lots of luck to you on your trail to club zero.

[alice1940]

Can l join your club after having pmr for 3 years l am now on 1mg Alice

[optermist in reply to alice1940]

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.

[alice1940 in reply to optermist]

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

[PMRpro Ambassador in reply to alice1940]

There aren't 1/2mg tablets available anywhere.

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:

healthunlocked.com/pmrgcauk...

[alice1940 in reply to PMRpro]

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

[HeronNS in reply to alice1940]

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.

[alice1940 in reply to HeronNS]

WOW that works just tried it and got a good half with no mess thank you HeronNS so much hope you are well Alice

[BonnyQuine in reply to HeronNS]

Thanks for info. Will remember this.

[PMRpro Ambassador in reply to alice1940]

Only if you don't rush things!

[alice1940 in reply to PMRpro]

I won't rush things after 3 years just a bit more patience Alice

[optermist in reply to alice1940]

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.

[PMRpro Ambassador in reply to optermist]

It isn't 0.05 you are tapering by but 0.50 - 1/2mg. It's so easy to type it the wrong way round!!!!

[optermist in reply to PMRpro]

😂😂 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 😉

[PMRpro Ambassador in reply to optermist]

You aren't the only person to do it!

[jannie21 in reply to optermist]

Welcome to the club optermist, Jannie

[optermist in reply to jannie21]

hi Jannie gather you have been in club zero a while...please share...I've only been in it just over 2 weeks...how long for you ☺

[jannie21 in reply to optermist]

I have actually just completed 3 years in club zero and no problems with PMR, touch wood !!!! Good luck with membership, Jannie.

[optermist in reply to jannie21]

Brilliant...onwards and upwards then..😊

[alice1940 in reply to optermist]

Thank you just been cutting my 1mg yes it is messy maybe practice makes perfect .Hope to see you in club zero in a couple of months Alice

[optermist in reply to alice1940]

😂 yes it takes patience and practise and trouble is they ate so small once cut in half be prepared to loose some along the way..lol

[alice1940 in reply to optermist]

Yes l have already made a hash of 4 lol , it's surprising how a little half can make a difference though , Alice 😀

[optermist in reply to alice1940]

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 😊

[alice1940 in reply to optermist]

Yes l will keep cutting and taper slowly thank you again will meet you in the zero club in a couple of months Alice

[optermist in reply to alice1940]

👍👍

[PMRpro Ambassador in reply to alice1940]

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.

[alice1940 in reply to PMRpro]

Thanks for the advice l am on my second pill cutter though , thanks again A

[Sho-Sho]

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!

[optermist in reply to Sho-Sho]

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.