Ear, jaw and throat pain

[TGerard]

I would appreciate some advice about dealing with ear, jaw and throat pain.

I've been on pred since November 2018 - 15mg to start with, after PMR diagnosis. Got down to 7mg in October 2019 but had a bit of a flare so back up to 8 then 9mg without any benefit, before being diagnosed with GCA in mid-January this year. Two weeks of 60mg pred made me feel better than for years! Since then been tapering under rheumy advice and now on 8mg. It's generally been going very well - better than the tapering from the original November 2018 start point.

I have been keeping regular notes of my condition since the flare-up last October. On April 23rd this year, just five days after dropping from 17.5 to 15mg pred I noted "left ear/jaw a bit sore/achy on and off". No further mention of ear or jaw until the end of June, nine days after dropping from 12.5 to 10mg. At that stage I noted pain in the left angle of the jaw and in the ear when moving the jaw. That was mentioned for three days before the problem faded away.

Since then I have had some discomfort on and off until the last week or ten days, when it has been much more noticeable and there has been some soreness at the back of the throat as well (not the kind of soreness associated with colds). I dropped down to 8mg pred on 9th August and wonder if that is what has caused the latest problem.

It would be very useful to know if others have had similar experiences. If the latest taper is causing the current problem, would it be best go back up by 5mg, as has been mentioned on the forum in some cases, or should I try a smaller increase?

I would be very grateful for some advice.

Best wishes to all and thank you to so many of you for the sage advice and encouragement you provide.

[PMRpro Ambassador]

I do feel that if you were told you had GCA in January that it is a very fast taper to be down to 8mg now.

This

rcpe.ac.uk/sites/default/fi...

from a very respected group and, in particular, a consultant rheumatologist with a very good reputation now in Luton, would keep you at 10mg for a full year.

It is fine to reduce fast while it continues to work well but at some point you get to a level which is on the borderline managing the inflammation. Then you run the risk of a speedy reduction resulting in needing to go back to a considerably higher dose and losing all the perceived advantage of haste. What you describe are things that are mentioned as symptoms of GCA. Personally I'd go back to 10mg and see if that works better - and if not, ask to go back to 15mg and then work from there.

[DorsetLady PMRGCAuk volunteer]

60mg to 8mg in less than 8 months is super fast....

as PMRpro rightly says it might be okay on higher doses when there’s is plenty of ‘spare” Pred in system, but you’ve obviously gone below the level you actually NEED on a daily basis.....and the problem with too fast a taper you’ve never really sure current dose is adequate before you drop again.

So to use PMRpro’s excellent analogy it’s like a dripping tap filling a bucket, every SEEMS under control until it overflows!

Looking at your notes, the inflammation has building since April, albeit slowly, but now, it become too much to be controlled successfully by daily medication.

You may find 15mg is enough, but it may not be! as that is the level it first started.

[TGerard in reply to DorsetLady]

Thank you PMRpro and Dorset Lady for your advice and sight of the RCPE article. Your advice makes a lot of sense. It does look as though I have been tapering rather rapidly. Rapid may be fine until you hit a problem and then you have to go into reverse and are likely to end up worse off! I do feel that there is no option but to go back up and try to find a level that works and stay with it for a good while. I will discuss with one of the rheumies - I have dealt with four different ones in the past 7 months and a bit but they do seem to be consistent in their approach.

[DorsetLady PMRGCAuk volunteer in reply to TGerard]

Yes you are quite correct in your thinking about tapering, reversing..and finding correct level.

Your rheumies probably are in agreement roughly about tapering - but having been there, I personally think the recognised advised tapering plan is too fast. They do have provisos for flares, but my view, if you taper sensibly taking note of symptoms (or rather lack of them) there should be no flares! Ideal world, maybe, but it worked for me.

Plus the tapering regime, a good point, does say it should be in consultation with the patient's' wishes - that's not always adhered to either!

Most doctors seem to have this hate/hate relationship with long-term Pred use, and to be honest it invariably does the patient no good!

Good luck in finding the level you need.

[PMRpro Ambassador in reply to TGerard]

Exactly - you hit the nail on the head! DL said everything else.

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As a beginner I can’t help except to theorise. I have decided to follow you though to see what the responses are as I am at the acute GCA stage with symptoms still at 80gm.

Thanks for posting your question.