The pain of PMR: I was ID with PMR in Feb2018, main... - PMRGCAuk

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The pain of PMR

SRIXON profile image
5 Replies

I was ID with PMR in Feb2018, main pain in neck, shoulders, arms along with feeling like I had head cold most mornings.

I was started off on 20mg Pred and over the last 25 months tried to whittle my way down as the steriods were also making my blood sugars fly, I am type 2 dieabetic.

As of today I am down to 5mg but I feel lowsy, tired, my shoulders and arms ache, I find it very difficult to bend down, getting dressed is not easy, lifting things such as my small dog is not easy. Im 63. Colin .

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SRIXON profile image
SRIXON
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5 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Colin,

Would say you may well have hit the dose/time when your adrenal glands should be working again, and they are not! Or at least not enough.

Unfortunately it seems to hit most of us, sometimes slightly higher than 5mg - mine was around 6mg.

Plus if course you may have gone below the level of Pred you actually need on a daily basis.

You could try increasing by a mg or 2 for a week or so to see if that makes any difference! That may confirm if you’ve dropped below your optimum level for now. It surprising how much a mg or even a half can make at lower doses. I appreciate because of your diabetes you don’t want to increase, but it worth a try just for a short period. If it makes no difference you can drop back down to 5mg.

If it is sluggish adrenals, then the slower you reduce the better - 0,5mg a time and a slower taper like this -

healthunlocked.com/pmrgcauk...

If you get no better after a couple of months, then you can request a synacthen test (ACTH) to see if your adrenals are capable of working.

PMRpro profile image
PMRproAmbassador

I suspect you have overshot the dose you require to manage the inflammation that causes the symptoms we call PMR. What was the last dose at which your symptoms were good?

Did no-one tell you to cut carbs in your diet when you started pred? Type 2 diabetes can often be managed with diet alone. Pred alters the way the body processes carbs and removing them from the diet can reduce the risk of developing steroid-induced diabetes or worsening existing Type 2. Remove all processed carbs, especially simple carbs and sugar, from your diet and your blood sugars should calm down. Monitoring the Hba1c is more important with pred than checking the random BS levels which can be misleadinhg as they may shoot all over the place since pred causes the liver to release random spikes of glucose.

Do you mean Feb 2018 or 2017 when you were DX? Down to 5mg from 2018 is much quicker than 2017 (obvs). You have gone past your dose. My Rheumy said most of his patients really struggle from 6mg to 5mg.

I am type 2 since 2000. I had to go on insulin 2 years ago. Having felt terrible on pred for almost a year with an hba1c of 114 it was a big relief despite the issues regarding driving licence. Whenever my blood glucose is too high or too low I get more pain in my neck and shoulders. So much so that I check my blood glucose if they start to hurt significantly and I haven't done any serious activity with them. That said similar symptoms were evident when I tried to drop from 6 to 5mg. Rheumy put me back up to 6mg and have been there for months. If you felt better at 6 or 7 perhaps you need to discuss going back up with Dr.

SRIXON profile image
SRIXON

Appreciate you taking the time to respond. Oh 2017 lol. X

SRIXON profile image
SRIXON

Thankyou

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