Hello to my learned fellow sufferers. Since my diagnose in 2014 I have gone from 20mm of Pred following the slow taper chart printed from HealthUnlocked., now on 4mm. In trying to get below the 3mm is when the stiffness in shoulders and neck return. I was down to 3mm which was okay, but as soon as I went a day on 2mm the symptoms came back. I had my adrenal gland checked with blood test last week, and the good news is, it's working normal. Which is a good sign, I don't seem to suffer from the fatigue anymore, its this damn stiffness that reoccurs when any lower taper . I guess my simple question is, with a normal functioning adrenal gland, why are the PMR symptoms still persisting, and should I persist with the 3-2 mm Pred. From what I have gleaned here is the very low Pred dosage withdrawal is the trick part? Feel like I'm close, but no cigar.
Thank you
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Southmead
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That’s very good news, that your adrenals are functioning normally. So you are ok on 3mgm, but dropping lower starts up symptoms. If you’re dropping a whole milligram that’s probably too much, the lower the slower, so try 0.5mgm. Maybe stay on 3 for a couple of weeks, make sure everything has settled & you’re feeling ok then try again. It’s taken me 6-8 weeks to get from 3 to 2.5, and I couldn’t get any lower. I’m ready to try again now so hoping it works, for you too!
I would if I were you - give it another couple of weeks and see if there is any improvement. Remember it takes up to 1 year for your adrenals glands to become fully functional and that is why you must still carry you Blue Steroid Warning card with you at all times.
I do hope you are not doing to much, thinking you are OK. Remember you are 7 years older and therefore you would not be the same without having PMR to contend with so steady as she goes and do not overtax your self - you are still a precious prince or princess. 🤔🤔
When it feels as thought it eases, try 1/2 mg at a time - using the plan. Remission will come along, but it comes when PMR says 'had enough at the minute bye bye' . Hopefully it will be remission for ever.
If it's just neck and shoulders, you might want to have an x-ray done to rule out Cervical Spondylosis (degenerative disk disorder (DDD), or some call it neck arthritis), which is common as we get older (neck and shoulder stiffness). I do have it, and it has become much more noticeable after dropping Prednisone from 8mg to 7mg (I'm at 7mg now). The good news for me is that if I go for a walk or use the treadmill, I don't feel the symptoms after about 10 minutes. Just something might want to rule out in case it isn't PMR.
I’m in the same situation- tapering to 2 1/2 mg Pred with the DSNS method but shoulders and upper arms are so painful- been to my first Pilates and couldn’t even lie flat on the floor. I desperately don’t want to increase my Preds, having got this far and managing to lose weight with Low fibre diet and feeling adrenals probably kicking in. Sorry - feeling sorry for myself.
If you have the signs of a flare of the PMR symptoms, even 1/2mg too low may result in the inflammation building up slowly until you are back where you start and need a much higher dose of pred to get it under control.
I understand exactly what you mean, it's been a long road, hopefully with encouraging road signs, finally. As pointed out on this site, it's surprising how much 1mm can make. On we go..
The adrenal function is nothing to do with PMR itself and you are never reducing relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that gives the same result as the starting dose did. If you have got well below 5mg you are doing well, There is no hurry - be sure the PMR is no longer active. Try to avoid forcing the reduction - more often than not it ends in tears when you allow in a flare which get well set in and you end up increasing the dose to get it under control. It really isn't worth it ...
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