Progress: After just over seven months have finally... - PMRGCAuk

PMRGCAuk

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Progress

Body_bonkers profile image
13 Replies

After just over seven months have finally made it to 10mg prednisolone (from 50mg) and feel like celebrating !

I would not be in this position if it were not for this fabulous supportive group - THANK YOU so much. You've given me confidence to question the medical establishment even though it is still a constant battle.

I'm feeling better and going to try and enjoy it before the dreaded adrenal failure looms as my dose goes down further.

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Body_bonkers profile image
Body_bonkers
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13 Replies
SheffieldJane profile image
SheffieldJane

congratulations and good for you. Now go really carefully the next bit can be tricky. Not everyone gets Adrenal failure, managed right it can be ok.. Give your Adrenals plenty of time to get the message to begin to do without the steroids. Get a sharp pill cutter and start reducing by half a mg - some even do quarters. See FAQs. Good luck 🤞 it holds.

Body_bonkers profile image
Body_bonkers in reply toSheffieldJane

Thank you SheffieldJane. GP/Rheumatologist will be an ongoing problem. They want me off steroids ASAP but I've already been going slower to get to this point - they nearly refused to give me one repeat prescription as it did not last as long as it should

PMRpro profile image
PMRproAmbassador in reply toBody_bonkers

Lord help us - disatisfied with you getting from 50 to 10mg in 7 months? What world are they living in?

Bcol profile image
Bcol

Brilliant and as SJ has said not everyone suffers from lazy and on holiday adrenals. 0.5mg from now on. I worked on five week DL taper and only dropped to the next level when I felt all was good. All gone well so far so no rushing at this stage.

Body_bonkers profile image
Body_bonkers in reply toBcol

Thank you Bcol that is good to hear

Merryfield profile image
Merryfield

Congrats, Body. This is inspiring news. Best luck in getting through to the end of steroids.

Body_bonkers profile image
Body_bonkers in reply toMerryfield

Thank you Merryfield but my hopefully my journey is not too 'inspiring' given the mismanagement from GP/rheumatologists from the outset

Merryfield profile image
Merryfield in reply toBody_bonkers

You never gave up and were persistent. That’s inspiring. 🙂

Satya70 profile image
Satya70

Always great to hear good news!

SMW10 profile image
SMW10

Congratulations indeed. After a flare up am now about to go to 2.5 from 3. Obviously the proportional decrease is larger the lower you drop. Nothing to add to the previous positive replies.

Body_bonkers profile image
Body_bonkers in reply toSMW10

Thanks SMW10 - hope you make continued progress too

Gossiplady profile image
Gossiplady

Hi Body_bonkers! Well done on your progress and isn’t it wonderful to feel pain free? Yes, take it very slowly, very very slowly. I reduce in 0.25mgs at a time as I just don’t want pain. Keep smiling, we will win!

Body_bonkers profile image
Body_bonkers

Thank you Gossiplady - totally agree on the lack of pain but the side effects have been just as debilitating so feel like it's all a 'sensible' balance at this stage moment. Some of my pain will return as suspect other causes but hoping no new symptoms have been concealed by this long, high dose of steroids in the meantime

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