Increase dosage and taper

[outdoornut]

I have been managing my PMR for seven years, and on prednisone for five of those years after thinking I could manage it withou meds. Dumb idea. I can taper down to 4mg or 5mg, but have to then increase to a higher dosage to address a reoccurring pain and numbness in arms. Is there a magical formula to guide me as to how high I should increase the dosage when pain and arm numbness reoccurs (e.g. 2x the current dose, etc.). I despise taking medicine so always try to get by with the lowest dosage, but am not sure that approach has served me well. Also, I typically taper at the rate of 0.5 mg every two weeks. Is there a suggestion for a better approach to tapering? Thank you everyone for sharing your experiences. I recently stumbled into this group and find the information shared by you all to be extremely helfpul.

[PMRpro Ambassador]

Hi and welcome.

Under Tapering in the FAQs (link at the top of every thread in a bix under your post) you will find a whole lot about reducing the dose slowly and effectively and how to deal with flares without ending up in a yoyo pattern of dose which only leads to trouble. We say add 5mg to the dose at which you flared for up to 10-14 days and then drop back to the last dose that was good,

We would consider 0.5mg every two weeks a bit fast - it takes at least 2 weeks to know the dose you are now on is still enough. You should be seeking the lowest effective dose - but it must still be enough and not very slightly too low because then the dripping tap of inflammation will fill the bucket again and eventually overflow. So 5mg may be good, 4mg not and you get into trouble.

Have you been investigated for the arm numbness and pain? On the surface, that doesn't sound entirely PMR but tell us more. To me it sounds more like a trapped nerve somewhere and there may be a better way of dealing with it than pred. Sometimes there are other ways of dealing with such things and that may let you get to a lower dose of pred.

[outdoornut in reply to PMRpro]

Thank you for the advice. I will make the adjustments as you suggest. The tingling and numbness in arm was new to me with the onset of PMR and does not exist with a higher dosage of prednisione, so I always attribtued it to the illness. However, your response gives me reason to pause and I will take a deeper dive and explore further with my GP. Thank you!

[PMRpro Ambassador in reply to outdoornut]

It might be because of the PMR that you notice it - is it just one arm or both? I'd be wanting some investigation of neck vertebrae and muscles around there which could be spasmed and pinching a nerve. It may not be of course but needs looking at.

[outdoornut in reply to PMRpro]

Both arms. I have been doing a bunch of research this morning on steroid induced myopathy because I have lost a high percentage of muscle mass. Interestingly enough, one of the symptoms of disuse atrophy is numbness and tingling in arms and legs. May be a coincidence, but seems to be linked. Thoughts?

[PMRpro Ambassador in reply to outdoornut]

That is true - and if you have lost a lot of muscle mass that could be a cause. But in that case - you need appropriate physio exercises to maintain what you have.

[DorsetLady PMRGCAuk volunteer]

Nothing to ad to PMRpro's comments...

[Viveka]

Just thought - in addition to the above, if you are new to the forum are you aware of the impact of the adrenals kicking in which would be happening at 5/4mg. If not, have a read of adrenal FAQs. Stuttering adrenals can causes all sorts of symptoms including mimicking PMR pain, though they are not associated with the numbness you describe.

[outdoornut]

Thank you.