Keeping fingers crossed, this is now my third attempt , tapering to zero . First attempt after GCA in June 2016, second PMR November 2017 and then third PMR July 2019. A total of more than 4 years of continual daily prednisolone. Hoping I can be free this time. Nearing the 6 week marker, without a gram of prednisolone and the body seems to be holding up. Just a bit creaky on getting up and walking, after prolonged sitting but may just be old age!
This is part diary and part sharing, in case you are in the same boat too!
Written by
DevonMichael
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..and I would hazard a stab that first two attempts when you got to zero, your illness (whether you thought PMR, GCA or more likely, both) probably were still active.
Hopefully they are in remission now...and being creaky is most likely as you imply...age related.
Good luck this time round. I'm down to half mg pred and 15mg MTX. Rheumy said get off the pred then we'll deal with MTX but all of the helpful advice on here has made me trust my instincts more than the expert advice so I'm tapering the MTX to 10 before dropping off the pred. See the rheumy in Jan so I'll see where I am by then.
Thanks for the update .... I’ve just had to increase as having a bit of a flare. I’d got down to 1mg (on methotrexate also). Not quite my time yet, but you give hope (from a fellow GCA/PMR person) Wishing you well, the time could be right for you now
That’s interestingI’m at zero for 5 days now (with fingers crossed) having tapered over 18 months.How long did your previous 2 attempts go before you had to restart and what dosage did you have to go back to?
Will be interested to hear how you get on. I am 29 days into zero pred, felt quite odd for first week or so (withdrawal symptoms?) but feeling better now - except for the rotator cuff strain!
What do you mean by rotator cuff strain? That’s what my PMR was diagnosed as originally. I had a steroid injection and that cleared it for a while but then I had a CTR scan on my shoulder which ruled out rotator cuff strain (the pain had by now travelled to my other shoulder) and PMR was eventually diagnosed.
Threerivers I have copied and pasted my experience of last failed attempt. I lasted 3 months and went back on 15 mgs which had me running around like a new man!
In March 2019 I reached zero prednisolone for the second time after being diagnosed in June 2016 with GCA and then PMR in Nov 2017. Sadly this was another false dawn the battle to stay off steroids lasted three months this time after which I have had to give in. Continual pain in the shoulders on dressing and a leg enduring pain and cramps particularly after a stint of driving, coupled with a weak right arm - finally proved too much to endure any further.
The stress of it all may have affected my blood pressure which is high at 162/175 checking inflammatory markers they are ESR 28 and CRP 32.
To day I commenced what is the start of my third prednisolone tapering plan with 15mg and hopefully the next few days of medication will get me back on track to feeling normal again. The last three months medication free have been so difficult.
I am sharing these thoughts for others similarly affected.
Have you thought of starting with a lower dose? 10mg, even 5mg? What is often suggested for a flare is adding 5mg to where you flared - and if you got to zero and it took a few months before you got symptoms, it is very likely that you need only a low dose. Prof Dasgupta told us in a webinar some months ago that he often leaves patients at 2-3mg indefinitely as it reduces the risk of a flares. Plenty of patients have found that 1mg is enough to keep it at bay - but zero just results in a return.
Hi DevonMichael, many Tx for getting in touch! My 1st attempt at coming off pred at the end of my (then) Dr's plan re tapering from the inital 15mg, then quickly down to 10mg then a reduction of 1mg reduction each following 6 weeks sadly didn't end well and I had to go back onto pred after a few days at the end of this plan.I then re-stared at 4 mg of pred (I was previously fine at this low dose) using the DSNS PMR plan. I did felt better at the end of this plan than my previous one but not brill - muscle ache etc. but then quickly had to admit going back onto pred was staring me in the face with the old muscle soreness etc . My wonderful (new) Dr. did my bloods and my CRP was 41 when normal is 10 ish so no wonder I felt rubbish.
So, I'm now on 5mg pred and on week 5 and feel Great and waiting to be back in touch with my Dr. re the next step. I had so hoped my Time Restricted Eating and weight loss was helping my body giving it time to heal and a good chance to get my adrenal gland working again, but Sadly, Alas, No!! So fingers crossed going forward and good luck to you to and hope this helps!
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Still confused about fatigue
Recovery time
Different attitude this time around
Newly diagnosed PMR
