Prednisolone free for two weeks!: So far, so good... - PMRGCAuk

PMRGCAuk
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Prednisolone free for two weeks!

So far, so good just passed two weeks of no prednisolone, omeprazole, alendrotnic acid and colecalciferol etc etc. After almost three years of daily medication, first for GCA then PMR there is a great feeling of freedom. Hopefully this is not a false dawn this time around!

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I'm so happy for you Michael, it's one big step forward to saying cheerio to both PMR and GCA ...

Take it easy and let your body get accustomed to its new life style. Plenty of rest.

Good luck πŸ‘πŸ‘πŸ‘in your achievement to get down from prednisone..

Well done πŸ‘

YuliK.

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Fingers crossed! 🀞

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Fingers crossed!!!!

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And toes.. :-)

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Hope all goes well for you.

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Holding all my fingers and toes crossed for you , or at least I would if I could be sure that I could uncross them again!!πŸ˜‹πŸ˜πŸ˜‚πŸ˜‚πŸ˜‚

Best of luck and well done , you give us all hope x

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What a great result. I sincerely hope that you keep sympton free from now on. What a wonderful feeling it must be to not have to take the cocktail of tablets necessary at times, can't wait.

Good luck

D

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Living the dream! Long may it continue x

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🀞

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All The Very Best Michael πŸ€

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excellent news long may it continue

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Greetings and thanks for the update Michael

It's always nice to hear positive news here. It gives others some Hope and encouragement that things can get better on the PMR GCA Journey.

As you say, hopefully not a false dawn and a positive sign of things to come? Make the most of it! I've had a couple of weeks at Pred Club Zero too, and with no significant ill effects despite being quite physically active.

Best wishes and keep us posted.. ;-)

MB

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You too? Marvellous!

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Thanks Soraya. Yep, not for the first time, so cautiously does it..

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That sounds great Mark. Be carefull not to over do it. Congratulation to you too.

ATB. Stella

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Ta Stella. That's the trouble, my N&D say I don't have a 'Stop' button activity-wise.

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So pleased for you...Tedski must be happy!πŸ˜‰

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Thanks Lt. As always, we'll see... Tedski's coming out of hibernation - watch out.. ;-)

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We eagerly await Tedski’s return from inspecting the gula......errrrr hibernation!

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:-D

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Are you down to zero again MB? I remember, a short while ago, you got fed up and β€˜had a go’ which didn’t quite work out? Have you done it by a taper this time?

I’m down to 2mg daily myself and was contemplating a 50% drop(!) to 1mg, then zero......

Best Regards & Congrats to Michael

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Yep Rm. I checked my records today - been a guest member of Pred Club Zero a few times in the past 12 months before PMR symptoms very slowly crept back in. Not recommended, I know, but at very low levels of Pred a faster drop (like you're contemplating) doesn't seem to affect me adversely in the short term. In fact, I've often felt better for it. Maybe a good sign overall - even if using low level Preds on an 'as needed' basis (i.e. when under extra physical / mental load)?

Yep, fingers crossed for Michael..

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Well done you , Tedski must be overjoyed , more hope for us all , hugs xxx

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Thnx Bee. Well, for now at least - we live in Hope.

As for Tedski? Oooppps, I forgot! He's still in, er, 'hibernation' in the freezer after 3 months. Better thaw him out in the microwave and bring him back to life for another round of mischief and general silliness (either here or somewhere...)? ;-) :-D x

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Here please! πŸ™‚πŸ™‚

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Careful what you wish for Christine!.. ;-) :-D

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πŸ€žπŸ‚

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πŸ‘πŸ‘πŸ˜‰πŸŒ»

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Congratulations Michael! Great news, a hard journey completed. All the best in the future. You are an inspiration.

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Michael, I know how thrilled I am to have finally managed to get to from 10 mg to 9.5 mg after three attempts, so to finally hit zero must be just so wonderful. Take care, stay well. πŸ‘ πŸ‘

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Congratulations. I can only imagine how you must be feeling. Keep us posted.

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Hello DevonMichael, so pleased to hear your news. I too have been steroid free for about six weeks after two years and eight months of PMR. I have hesitated to mention it before as it could be a false dawn after a relatively short period compared with others on this forum. I am still being very careful about resting regularly and not going too mad in my veg garden (difficult in the spring) but really don’t want to set things off again. Perhaps it is the air, I too am in Devon!! Good luck.

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Congrats! Softly, softly......

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Thank you Soraya

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So good to hear all of those at zero pred.....I am lowering and as always feel awful, just trying to stick with it...have gone up and down from 8.5mg to 8mg so many times!.....after 7 years I keep thinking surely it`s getting to the end now!.....but heyho we keep plodding on...

I had begun to think I wish I was a man at times like this (not really though!)...because they seem to take pred for a shorter time.....so I`m pleased you have achieved that in under 3 years....

Keep well....

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Thank you Longtimer for your response and I know from my journey that 8/7 is a really tricky time. I was on it for months before I could reduce any more. I think some people do have a harder time than others and that seems the case for you. I was lucky enough to have a doctor who showed absolutely no interest in me so I could reduce at my own pace!!! Thanks to the wonderful advice I got from the β€œaunties” and others I was able to go gently from the moment I was diagnosed. Hopefully you will be on the home straight soon.

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Thank you for that......

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Thank you Longtimer for your generosity to me when you are struggling. I too had difficulties around the 8/7 mark and had to spend many months there. The key to this illness is never to rush it I found, and having a doctor who showed not the slightest interest in me enabled me to always go at my own pace!! Wishing you all the best.

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Same as my dr!

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Reading all these zero Pred successes are really giving me alot of positive feelings for the future.

Six weeks and counting , well done and hope it continues xx

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Thank you Blearyeyed and glad it has encouraged you. I know it is still early days which is why I am sticking to the new lifestyle which has worked for me so far. I now lead a much quieter life than before and have learnt to love it. Good luck with your journey.

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Great philosophy !

Enjoy the peace and quiet a little longer and give your body time to get strong again and I am sure the future will be very bright for you. xxx

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All best wishes - this is 'it' something we are all striving for - or at least hopeful for - we are all on your 'side' !!

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So glad to see a positive comment from someone off the meds - thank you

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Wow, good on you , that's fabulous .I also was diagnosed with PMR and GCA , almost 3 years ago (next month ) I have had a relatively reasonable journey through it all and am now down on my pred, trying to get down to 2 mg from 3 . Extra slowly , doing half mg drops every 3 rd day at this stage , so looking forward to being free of the drugs, but my rhummy is advising to take my time , it's like seeing the end of a long race, I just want to hurry now( but I won't) hoping you are having a successful recovery , congratulations . πŸ₯‚

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I was 3 years in February and am about to start my attempt to reduce from 3mg, which I’ve been on since December 2018 after 11 months on 4mg. Good luck to you!

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That's really encouraging news. There is a light at the end of the tunnel!

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πŸ˜€πŸ‘πŸ₯³

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Congratulations DevonMichael,

Good Luck,hope all goes well for you

There is hope for us all!!! x

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That is so wonderful. It has given me so much hope.

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Great news!

It gives us all hope! 😊X

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OMG!!!!!!!!!!!! Fantastic - enjoy every single second to the full. So very, very pleased for you. xxxxx

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Congrats! I think being mindful of autoimmune illness is key to staying in the club. Rest, not overdoing activity and self care are key!

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So thrilled for you (and anyone) who makes it to 0. Your post is very inspiring and gives me and others hope. It is interesting to note that you are male and your journey, despite getting both conditions seems relatively smooth and quick compared to others (women), something that I am noting on this forum.

Wishing you continued success without a return of any symptoms. Enjoy your β€œfreedom”.

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Maybe it's because Male sufferers , although usually reluctant to get help when they first have symptoms , are more willing to do as they are told and follow the rules of the disease unlike us women.

We all do seem to have a greater battle with acceptance and making the changes in our lifestyles after years of being the carers and doers in most domestic situations.

We are all too used to many years of battling on regardless through various illnesses , big and small , and we try to do the same with GCA and PMR , which usually prolongs the battle.

We also try to jump back in to 100% of our original active roles far too quickly after getting Pred free or close to the finish line , then trigger a reaction that sends us back down the snake again.

And , although we are not vain , the affect that weight changes and facial appearance , hair thinning and skin issues , after years of looking after our appearance, has a much greater psychological affect on the women than the men .

Not that the men don't take care of themselves , or don't care , but because of the generations they come from their self esteem ( and they way others judge them ) has always been less connected to their appearance than the women.

I have a feeling that that may change in future decades with many men in todays society putting far more emphasis on their physical appearance as part of their overall identity than has happened before.

It could also be that sites like these are used more by women too , and women on the whole are more willing to discuss the obstacles and problems they experience with their health openly .

Most men , even with chronic illness , will still hide alot of the issues they experience , even from their nearest and dearest . Men with illness often only speak openly of their improvements or achievements rather than asking for help or discussing what they see incorrectly as failures.

Often only asking for help , as they did when they were first diagnosed , when symptoms are far out of their control , or visible to others ( often the womenfolk) in a way that they can't escape the pressure to do something about it and see a GP.

Before that , even if they look for solutions on sites like these, their fear and health anxiety is often left trembling behind tight lips in a dark corner.

We do seem to follow different gender paths through our journey with these diseases but when we see recovery success it makes us all feel the same way , lightened by the joy of it.

Interesting point Canada chum , take care xxx

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It is commonly accepted as a fact by most rheumies - though they have no idea why. There is a suspicion that hormones MIGHT have something to do with it but there is no proof. The figures show there are about twice as many males with PMR than women - but is that because a lot never appear on the statistics because men don't like going to the doctor?

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I was just thinking yesterday how nice it will be when my counter is clear of pills and accessories. Good for you. Long may it last!

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So pleased for you & will be very interested to hear how you’re progressing, as I’m now on two & a half daily. Do keep us posted pleased.

Good luck. Mary

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That’s fantastic! Well done. And it’s encouraging to all of us.

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Great news so happy to hear that someone is off prednisone

Good luck

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Michael I am new to PMR 9 weeks now just reduced from 20mg to 17.5 . You sound so positive could you briefly share your journey? Sauntergirl.

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Brief info as requested: June 2016 diagnosed with GCA on 40 mg and tapered to zero Sept 2017 expected to be discharged by rheumatologist in Nov 2017 from GCA instead got a diagnosis of PMR ! My body was not coping without prednisolone and bloods showed ESR 57 and CRP 59. Started on 15mg instant relief and since tapered over a 16 month period to current zero. I no longer have the energy and strength that the steroids gave me but hope to keep drug free albeit a weaker version of me! Good luck with your path I hope you make it.

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So many thanks for your reply. My main problem is becoming so short tempered. I am usually such a happy "little soul" very upsetting.

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You will be a happy little soul again. I don't mind a bit of anger and at the moment you are trying to adjust to a chronic illness. Just remember to take it easy on yourself and sound off on here if it helps you get past issues and feelings you are experiencing. The pred and the PMR will be jangling your nerves. 🌻

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My wife was very understanding and recognised my being snappy and abrupt was a side effect, she also had to contend with me on 40mg being wide awake at 5am and running around like a duracell bunny. Coupled with always being hungry and always eating. All side effects that I have left behind, thank God!

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How GREAT fingers crossed!!! enjoy your freedom!

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From Mj in America β€œHope it’s not fake news”.

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πŸ˜‚πŸ˜‚πŸ˜‚

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Or as a certain President would say: 'FAKE NOOZ!!! ;-) :-D

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congratulations hope it stays away

any tips on how you tapered??am stuck on 7mg but have only had PMR for a year so guess I need to be patient!!

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I went down in 1 mg monthly steps but built in a few extra 'stand still months' using up some spare 2.5 mg and some 1 mg (excess from tapering on repeat prescriptions). This was to not waste the tablets and also give me a slower descent. As a previously reaching of zero on GCA came with a PMR flare. So I felt more cautious second time around!

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This gives us hope! I am down to 3/4mg every other day and hoping this might be the end! Thanks for your good news. And good luck.

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Do you mean 0.75mg every second day or 3mg one day, 4mg the next?

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I meant 3mg one day and 4mg the next for a month, then 3mg only for a month, then 2mg one day and 3 mg the next etc. hope this works!

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3mg one day and 4mg the next for a month. Then just 3mg every day and so on for a month. I am going really slowly.....!

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