To increase meds or not to increase meds that is ... - PMRGCAuk

PMRGCAuk

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To increase meds or not to increase meds that is the question.....

England05 profile image
12 Replies

I just need a little guidance. Have had PMR for now a year, am on 8 mgs prednisone, don't seem to be able to go below that but that is ok. Was doing well and then I had family come out and maybe over did things. Now I hurt. My question is do I increase the prednisone or ride it out. Does the prednisone help with the inflammation or just help with the pain. Hate taking meds for no reason so if it is just a pain thing can live with it.

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England05
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PMRpro profile image
PMRproAmbassador

It is the inflammation that CAUSES the pain - so you have to manage the inflammation to manage the pain.

How long is it since the family left? You could try a few days at 10mg and drop straight back to 8mg. That might be enough if it is just a borderline "I did too much".

England05 profile image
England05 in reply toPMRpro

they left a week ago and since they have left have absolutely no energy body aching. I will try upping the dose and see where we go from there. Thanks for getting back to me

PMRpro profile image
PMRproAmbassador in reply toEngland05

I suspect there is probably an element of adrenal lackadaisicalness about this. 8mg is the point round about which your adrenals have to cough up with a bit of their own contribution. And the excitement (or otherwise) of a family visit can be enough to knock anyone for six!! And the answer to that in the short term is also a mg or so more pred.

England05 profile image
England05 in reply toPMRpro

thank you. Love my grandkids but first time since having this that I have had them for so long. It was worth it though.....

Jude62 profile image
Jude62 in reply toPMRpro

Thank you PMRpro your wisdom and experience help us so much

England05 profile image
England05

Have to say thank you to all that responded. I went up just one mg of prednisone to 9 and aches have subsided drastically. What a difference. Will do this for a week and try and go back to 8

PMRpro profile image
PMRproAmbassador in reply toEngland05

Really - don't be in a rush. 1mg at a time below 10mg is the maximum, 1/2mg is better. 8mg is what they call a physiological dose - and what's 1mg here or there for a few more weeks.

England05 profile image
England05 in reply toPMRpro

thanks appreciate your input on all of this.

Ronnie101 profile image
Ronnie101

PMRpro if you can put up with the pain do you think it would be ok to resist increasing pred for as long as possible? Or is underlying damage being caused by the disease?

PMRpro profile image
PMRproAmbassador in reply toRonnie101

The unmanaged inflammation is held by some top experts in their field to cause damage to the cardiovascular system (the linings of arteries in particular) and low level inflammation is felt to contribute to your risk of developing some forms of cancer.

I had 5 years of pain with PMR because it wasn't diagnosed - I've now been on pred for 8 years. No contest, wouldn't go back.

Ronnie101 profile image
Ronnie101 in reply toPMRpro

Thanks, I suspected there would be a reason to try and control it with pred. As usual, the dilemma is with the side effects of pred - after 2.5 years I've got a few - cataracts, high eyes pressures, osteoporosis, and pulmonary thrombosis, all of which the "experts" have linked to steroids. Now I'm down to 10 mgs I'm really loathe to increase, despite the pain!

PMRpro profile image
PMRproAmbassador in reply toRonnie101

Cataracts are easily dealt with - and it really is a problem I'd like! To be able to go around without specs on my nose would be wonderful!

High eye pressures are less good - but drops do work well.

There is some evidence that steroids increase the risk of DVT and so pulmonary embolism if the DVT is not spotted - but the study linking them wasn't particularly good. I assume you are now on blood thinners? The DVT could just as well have been due to the damage done by the PMR/GCA, whichever it is you have and the risk is reduced if you are on warfarin or something.

And there are ways of dealing with osteoporosis - though that doesn't mean you will have a broken bone either. People with normal bone density break bones, people with low bone density don't necessarily.

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