The last one! : After two and a half years, two... - PMRGCAuk

PMRGCAuk
9,439 members16,617 posts

The last one!

After two and a half years, two flares and all the side effects Pred causes, I’m free!! Today I took my last steroid tablet. Thank you so so much to whoever created the Dead Slow Nearly Stop method of tapering. I used this method from a daily dose of 10mg down and it’s certainly worked for me. I’m still having to take methotrexate for the rest of the year (15 mg once a week) but this is such a great step forward. I do so wish you all the same success.

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Good news, and good luck.

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Lovely news! Did you find Methotrexate a big help with not too many downsides?

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Yes I certainly think MTX helped. I am luckier than some. Apart from thinning hair, I didn’t suffer any other side effects. My rheumatologist is adamant I must remain on MTX for another year but will consider lowering the dose to 10mg per week next year. To anyone hesitating about taking it, I can only say try it, it’s worth it to help get off steroids.

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Thanks Paulamac77 !

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Congratulations & All The Best for the future 🍀

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Well done. Let us know how you are getting on.c

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What a poignant photo. Really symbolic. May you be PMR free forever. Congrats! :) :) :)

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Congratulations 😊

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That is so good to hear. Stay well!

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Please keep us updated! All the best!

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👍👍👍

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That is so encouraging. 👍🏻

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Congratulations and good luck

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Paulamac77 really pleased for you

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Well done! I am also going down and a very steroid knowledgeable friend sent me this

Which might be of interest to others.

Please watch this little video

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Very informative video thank you for sharing.

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Sorry...I'm always a skeptic. I wasn't quite buying the information presented in this video clip. Media Bias/Fact Check's statement about iHealthtube says that, "overall, this is simply an unreliable source for credible medical and scientific information." mediabiasfactcheck.com/ihea...

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Have to admit I lost faith when she mentioned ashwagandha. Possibly ok for some, but not those on pred.

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Very interesting. Thank you.

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I listed the herbs and things I take to help inflammation and my Rheumatologist beamed and said what great job I was doing. It is good to be open minded I feel. We just have to do our research. Ashwaghanda isn't on my list but I know quite a few people who swear by it.

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Ashwagandha stimulates the immune system, so not recommended for auto immune disorders.

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This is true - however some of it's other benefits are thought to out weigh. A case of doing our own research I think. I wouldn't touch AA or anything else with aspartame in it with a barge pole but some people swear by it.

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What I read makes me think it probably is a very effective treatment for certain conditions - because the list of cautions is so long! I would never self-medicate with something like that, too dangerous I think. Isn't AA alendronic acid, and where does aspartame fit into this conversation?

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Alendronic Acid contains Aspartame. The list of cautions on Prednisolone is extensive too and I was told I had no choice.

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Yes, but you weren't self-medicating with prednisone. And I wouldn't touch AA with a ten foot pole. Why would it have aspartame in it?

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Aspartame has crept into an awful lot of things - I tried to get a throat Lozenge in Boots without the stuff in - and there wasn't one.

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I suppose that's to save the teeth. Ricola has several kinds of sugar in it!

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Save teeth and wreck the Central Nervous System - your choice.

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Try to find sugarless chewing gum without it!

Only the Dentyne Fire and other cinnamon gums seem to be aspartame-free.

Used to be Trident Original flavor was OK, but xilitol has been replaced with Aspartame. Perhaps in response to xilitol being toxic to dogs. My neighbor had her Shitzu’s stomach pumped when he ate her wad of gum she’d taken out to eat lunch.

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I’ve gone back to sugared gums, like Doublemint.

My dentist says the sugar is gone after a few minutes of chewing anyway...

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Also applies if you eat sweets, it's better to eat what you are going to eat at once rather than sucking each one making them last all day. Sugar goes in one go. God I miss sweeties. Especially now they have brought back the memory sweets.

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If you enjoy a G&T it was quite a search but now Fever Tree is more widely available. I don't know how "You know Who" get away with calling it "Original Tonic Water." I am sure the Original was born long before Aspartame! I had a bad reaction in a pub one day...wretched barman had given me the slimline variety which was very cheeky of him! I should have demanded a proper one but I was on my bike and didn't need another gin!

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I have quickly developed a weakness for Fentimans!!

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Oooh me too! Lovely stuff especially when I’m allowed a small gin.

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Well done you and good luck for the future!

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Yeeaaaaayyyy !

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Excellent 👍👍👍

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Well done you, that’s so encouraging to others . Love the photo too.

I’m 3 years PMR this month. Always remember going to the Chelsea flower show, after taking my first dose of prednisone the day before, and I couldn’t believe how much better I felt. I’m now down to 2.5 dropping to 2 mg after following the Dsns reduction . It hasn’t been without its ups and downs but could never of done it without this support site and all the valuable information from all of you all.

Good luck Paulamac77 you should frame the prednisone box I think xx

Carole

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What a good idea Carole. Maybe I’ll frame one tablet to remind me I NEVER want to take steroids again. x

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Congratulations! It gives us all hope .

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Thank you - I do hope it lasts! DSNS was "mine" - but it was based on an idea from Ragnar the Swede who worked out a way to get below 5mg when he got stuck again and again.

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Well I can’t thank you enough for this effective way of tapering. It was easy on my system and I never felt unwell because the drop was so gradual.

PMRpro you deserve a medal. I have every confidence my GCA will remain in remission. (Fingers crossed of course).

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Wonderful news. All the best!

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There is life after pred! Well done.

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Developed by Patient Power.....................🤔

Ragnar (Sweden) started it, PMRpro then tweaked it. I tweaked it as Tortoise and Hare and then it went out, free of charge with a covering note to say 'not Medically approved.

Both were distributed widely, free of charge for over 8 years and they still are sent out on request. They have gone to so many countries.

That is the short story version, we printed an A4 page with the history and with thanks to Ragnar.

A very small research test was done and it 'thumbs up' - however as it was small it is just one step forward.

Many more reduction plans have now been developed as you can see from this site.

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Without this site and people like yourself, I would have remained lost in my own misery and still struggling I’m sure.

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Hurrah !!!!!!!!!!!!!!!

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Wonderful news!

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Congratulations! You made it to the other side 🌞

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Wonderful news. Do hope all goes well for you. Very poignant photo!! X

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How excited you must be! Please do keep us up to date as posts from people who successfully experience the end of their pred journey, and remission, give those of us who are still in the thick of it, hope and inspiration.

Celebrate this important day. Wishing you smooth sailing moving forward.

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It may take time but I’m sure many more of you on this site will join me in steroid freedom in due course. I will continue to follow everyone’s posts (and keep you informed of my progress occasionally). Thank you each and everyone for your support. It means a lot.

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Welcome to club zero. I have been in remission since 2015 so it can happen. Wishing you all the best for the future, Jannie x

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Thank you so much. This gives me confidence that I will not relapse.

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What is the DSNS reduction?

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Hi Chaucer...it's the dead slow nearly stop method. Please find details in this thread.

healthunlocked.com/pmrgcauk...

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Congratulations! So good to celebrate with someone reaching that magic zero. Enjoy!

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Not to rain on anyone’s parade, but isn’t the day you take your last dose of prednisone a bit soon to declare victory?

Several days to a week must pass to rule out steroid withdrawal, and a week or more to make sure there isn’t a relapse. After 6 painfree months, you might be home free.

Interested to hear how you’re doing in a few weeks. I’m sincerely hoping that you’re as good as you feel now.

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The DSNS method of tapering has helped me to reduce the risk of steroidal withdrawal symptoms with its oh so gentle weekly reduction and before my very last dose I had already gone six days steroid free and five days the week before that hence my elation that I might finally no longer need this drug. I still have to take methotrexate each week for the rest of the year but I’m happy I’m free of the dreaded Pred. You’re right, OutdoorsyGal, I cannot proclaim total victory just yet but watch this space and thank you kindly for your good wishes.

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Your joy is infectious. And long-lasting, too, I hope!

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Thank you kind Lady. Stay well yourself.

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