GCA turned into PMR?

[Lutra2]

I guess this is not unusual. I tapered off Pred last November, and hoped I was clear of GCA. But I slowly began to develop muscle aches around my shoulders from January. Consulted the GP today, and he thinks it's possible the aches and pains are due to PMR. So back onto 15mg Pred to see if that ameliorates the discomfort.

[PMRpro Ambassador]

Oh no! What a shame.

It is fairly unusual like that, it usually appears while tapering but the timing suggests yours did but is at a VERY low level of disease activity which then took a couple of months with no pred to get to a high enough level of inflammation for you to notice. And what does happen quite often is a patient with PMR gets off that last 1mg and feels fine for a couple of months before it is obvious that last 1mg was doing a lot more than they thought.

I think the lowest tiny dose I came across that was enough to prevent a relapse was 1/2mg every other day! Prof Dasgupta, formerly of Southend, told us he often kept patients at 2 or 3mg to reduce the risk of relapse.

With a bit of luck you will wizz down to 5mg and find that under 2mg is what you need. I certainly would risk going to 10mg as soon as you feel decent and even try 5mg soon.

[DorsetLady PMRGCAuk volunteer]

That’s a bit of naus…. But as PMRpro says you may be able to get to low doses quite quickly…. Hope so.

[Viveka]

This happened to me after two months on 3mg, so not off completely like you but at a low dose. It is incredibly disheartening, isn't it? In the end 5mg controlled it (after a couple of hairy months). I have just gone down to 4.5 and it has started to grumble but I am still in the withdrawal period so will see.

I agree with PMRpro that you're likely to be able to taper quickly to a low dose and take it from there.

What I also always say is that PMR is a different beast to GCA - for me anyway. It is more immediate and unmistakable. It is more sensitive to tapering at lower levels. It has more impact on exercise. However, it's less alarming, and it's also more possible to balance pred dose and symptoms within the overall aim of quality of life.

[Lutra2 in reply to Viveka]

Thanks Viveka. It was quite worrying, as the symptoms were nothing like the GCA ones - so one tends to think about awful causes such as cancer. As usual, the support and advice on this forum from PMRpro and Dorset Lady were excellent, and I immediately felt a lot calmer. And I am immensely grateful that the GP spotted the likely cause of my symptoms. I took the initial 15mg Prednisolone, and within hours felt much better. This morning, the aches and pains had diminished by at least 90%, so I have self medicated in only taking 10mg today. I'll stay on that till I have my next telephone appointment with the GP next week. Hopefully, I'll then be able to taper off again. Best wishes to you all.

[oscarandchloe]

Happened to me! GCA first then down to 4mg. after 9 months and wham! couldn't get my socks on, stiff in hips and shoulders so back up to 15mg almost one year to the day that I had GCA diagnosed. Two years later I'm on 5 mg after a long stay just there in order to deal with two hip replacements. Pretty sure I now have no symptoms of either anymore so taking the slow route down towards zero Pred. half a mg every 6 weeks.

[Lutra2 in reply to oscarandchloe]

Thanks for your comment. Glad you're able to taper at a pace to suit you.