The chewing gum test

[Esmeruth7]

I was diagnosed with PMR April 2021 and GCA October 2021. I have been really struggling this last few months with pain all over and fatigue. GP would not advise to increase Prednisolone (currently 8mg) until I see a Rheumatologist and prescribed Codeine for the pain, which I am unable to take because I have COPD I have now managed to get an urgent appointment on 10th May. I read on this forum about the chewing gum test for GCA and tried it but it had no affect on me. What I am getting all the time is very sensitive teeth and carry sensodine toothpaste all the time to rub on my gums. Is it possible I do not have GAV?

[PMRpro Ambassador]

PMR symptoms can also be part of GCA - what were the symptoms that gained the GCA prize in October? You are not reducing come what may to zero - and if PMR is part of YOUR GCA then the symptoms will return if you go to too low a dose to manage that part of your PMR/GCA - and while you are probably slightly too low for good management of the PMR part, it doesn't mean the GCA part is on the rise, hence the non-response to the chewing gum test. At what dose did you last feel well?

Feeling as you do is also a part of this level of dose of pred - it is only just about enough to manage day-to-day activities and any extra wipes you out because the adrenal glands are not awake enough to produce the usual boost of cortisol that helps you cope. That can cause fatigue and aches too.

So it could be a bit of both - and you do need to work out whether you have overshot the dose you need to manage the PMR symptoms, in which case you need to go back a bit, or whether this is the start of adrenal function waking up, in which case sticking where you are is the better longterm policy to regain normal adrenal function. Are your symptoms steady or are they becoming progressively worse? If they are worsening, it is more likely to be the PMR inflammation not being fully managed - the pred has cured nothing, it is a management strategy to keep the inflammation levels in the body at a level that doesn't lead to symptoms developing. And like all management strategies - it has to be strong enough to succeed, not half-hearted.

This is an explanation I have just written on another thread:

It isn't an uncommon effect at this sort of limbo dose - and the last 2 years have meant a lot of things are much more angst-provoking than they may have been pre-Covid.

After only a year on pred, even I assume with a boost in dose for GCA, your adrenal function should be able to recover fairly well if you are patient. It is less that the adrenal glands aren't working as that the body knows it has plenty of corticosteroid available for everyday activities as long as you aren't pushing things.

I describe it as a bit like a central heating boiler in combination with a woodburner stove in the same room as the thermostat - as long as the woodburner stove is lit and producing heat, the central heating boiler thinks it doesn't need to contribute, even though the underfloor heating in the bathroom would be handy when you want a shower! As the woodburner stove dies down and produces less heat, the central heating eventually comes on and the bathroom will warm up too.

You are just entering the range where the pred dose isn't always enough to do everything - but is still enough to suppress the production of booster cortisol and the whole complex feedback set up must wake up and settle down to provide normal servoce. That doesn't happen overnight, the adrenal function doesn't "kick in", it wakes up and adjusts slowly, thinking about it at each stage. Until that is reliable - you will also be a bit unreliable.

The trick is to stick it out as best you can and go slowly - small adjustments and not too often.

[Esmeruth7 in reply to PMRpro]

Thankyou for your reply. I had pain at side of head and jaw pain and immediately put on 60mg pred on 23rd October but did not have biopsy until 20th Dec which was inconclusive because I had been on high dose steroids. I was told "It is more than likely GCA".

[DorsetLady PMRGCAuk volunteer in reply to Esmeruth7]

That's not a very good answer....in fact it's a very bad, lazy answer!

[PMRpro Ambassador in reply to DorsetLady]

You can say that again!!!!

[piglette]

I had very sensitive teeth with PMR. I put it down to the steroids causing it. Good old Sensodyne!

[PMRpro Ambassador in reply to piglette]

Good old Sensodyne indeed - but mine was worse with PMR and no pred.

[piglette in reply to PMRpro]

That is interesting. Mine started a few days after starting the pred. Oh well.

[PMRpro Ambassador in reply to piglette]

There do seem to be 2 groups - PMR will do it, pred will do it, just depends