Return of GCA-like symptoms....from 2 months ago

[bright-horizon]

Hello again. Not sure whether to do this as a part of the original post of start a new one. So I'm doing both.

I have an update to the last extended and very helpful conversation of two months ago titled Return of GCA-like symptoms.....

And a question for all you wonderfully knowledgeable people.

The GP put me on 20mg for a week and all was well, finally. That was in mid January. The GCA symptoms disappeared, apart from the persistent ear/sinus thing (so now asking for a separate treatment for that). And miraculously the PMR symptoms have also gone. It is amazing and wonderful to not have that pain after what I now realize is 18 months of inadequately treated PMR! It is soooooo good to feel human again, almost.

As you said DorsetLady - how could you ignore that for so long? How indeed! Inadequate information processing = brain fog? Neither the GPs nor the rheumy taking any notice, despite my complaints? Preoccupation with a recurrence of pain from my old lumbar spine injury and a long rehab physio treatment?

In any case, hallelujah for Dr Peter is all I can say!

So now I have a question. I am now down to 13 mg prednisone and due to start a new taper next week. Can I do the classic jump down to just above the last effective dose (7mg)? Or have I been dealing for too long with inadequate control of the PMR inflammation for that to be a sensible move?

I've asked the Dr today and expect his answer will be to do 1mg per month to 10mg, and then .5mg per month until the end (of time?). That's the standard regime here in NZ. It feels too slow, considering I was at 3mg and had my eyes on the exit door.

Yes I know - it's not up to me when I'll reach it.

Anyhow, any thoughts from you scattered GCA/PMR buddies will be most appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi,

By the way it wasn’t me ignoring pain, it was doctor going off at a tangent suspecting other things…but heigh ho….

As for your reduction, scooting back down to 7mg in one go might be risky, much as you want to….

I would go to the 1mg a month to 10mg as you think might be suggested.

After then you need to go as best suits your illness (whether than be 1mg or 0.5mg per month) …..and take your eye away from the exit door….

You’ve only had PMR for 18months…….and despite what many think that not a long time for lots of patients.

Good luck, and hope you get your other issues sorted….

[bright-horizon in reply to DorsetLady]

Hi DL. I wasn’t referring to anything you said about you ignoring your own pain. I haven’t seen that. It was your comment on my post two months ago, which was spot on - “Naughty girl”. It gets complicated doesn’t it?

Thanks for your advice about the next stage of tapering, seems sensible, and I can get over the disappointment.

Just for the record I’ve had PMR for 3½ years. The18 months is how long I put up up with the pain unnecessarily.

[DorsetLady PMRGCAuk volunteer in reply to bright-horizon]

Ok-sorry misread that - yes life with our illnesses is complicated.

Will retract the “naughty girl” maybe if you behave in future 🤣😂

..hope it goes according to plan! But don’t suffer any more unnecessary pain -life’s too short.

Fingers crossed.

[bright-horizon in reply to DorsetLady]

Thanks! I’ll do my best 😇

[PMRpro Ambassador]

As I said on the other bit:

""It feels too slow" - it isn't too slow if it works - and look what happened last time!!!! And after 7 weeks I think you would struggle with a jump straight to 7mg".

You are only 18 months in and from 10mg I think you need to go slow. This GP sounds on the ball - what does he say?

[bright-horizon in reply to PMRpro]

Thanks! I’m still waiting for his email. Everyone here is swamped with our omicron surge, so it may take a while. I’ll let you know.

[bright-horizon in reply to PMRpro]

hi PMRpro. I've heard back from my GP. He recommends tapering by 1mg per month from here down to 10mg. and watch for any return of PMR symptoms. After that I expect he'll say .5 per month, but I'll go back on the DSNS system and take 7 weeks for each taper.

Yes, I'm happy with this guy. He's had a lot of patients on prednisone over the years. Also seems good at listening to patients.

HOWEVER he thinks I should jump back up by 1mg at even the slightest return of muscle aches, fatigue or brain fog. Goodness if I did that i'd never get over this. Almost every day at lunch time I begin to feel tired and my neck/shoulders/arms ache a little, and my brain decides it's time for a rest. I always have a nap, a good deep sleep, and wake up feeling just fine. It doesn't seem to me that this can be classed as PMR - I wake feeling fine every morning these days and the tired out symptoms come on after I have done a few little chores, or use my brain for a while etc. I really don't think this is an indication of PMR returning.

This is very different to when I was on 3mg and felt awful day and night with all the classic pain, stiffness and dizziness of PMR.

What do you think?

[PMRpro Ambassador in reply to bright-horizon]

No - sounds more like you are trying to do a bit too much - more pacing needed!

healthunlocked.com/pmrgcauk......

[bright-horizon in reply to PMRpro]

Thanks! By this I take it that these occasional symptoms are not due to uncontrolled PMR but rather my body’s reaction to more activity than it’s ready for? Is the key to this that they go away after resting, but PMR would not? I’ll read up about pacing.

[PMRpro Ambassador in reply to bright-horizon]

I would suspect so yes, The link I gave has a load about pacing in it - everyone is different but lots of people have similar experiences to you, finding they run out of steam by early afternoon. Doing things in multiple small stages is always a good idea, and changing activity regularly. And often that means you can achieve more before you get too tired.

[bright-horizon in reply to PMRpro]

I’m so grateful, as always, for your generous sharing.

[PMRconcerns]

What are the tests that confirm your GCA condition ?

[bright-horizon in reply to PMRconcerns]

The return of my GCA symptoms were just that. No tests except my CrP went up from less than 3 to 6, not really a lot. The symptoms were ache in my temple on the side where the arteritis was found, mild headache, more tired than normal, and my jaw was sore when I chewed food. After increasing prednisone from 3mg to 20mg all of that settled and my last CrP reading was less than 3 again.