Health concern

[Healthworker]

I have been on steroids for 3.5 months and so far have been asymptomaticHowever over the last week have experienced a dull ache over my temporal region and wonder if I should be concerned about this

[DorsetLady PMRGCAuk volunteer]

Would be useful to know a bit more about you -

What are you diagnosed with -GCA I’m guessing looking at bio

What symptoms pre diagnosis

Starting dose

Current dose dose.

..in bio you say “on present medication until March 2023”

Do you mean current dose, or meds in general (Pred ) -if latter sorry to say it doesn’t work like that.

Maybe have a look at this -

healthunlocked.com/pmrgcauk...

[Healthworker in reply to DorsetLady]

I havebeen diagnosed with temporal arteritis - prior to diagnosis I experienced shooting pains across the right side of my head

[PMRpro Ambassador in reply to Healthworker]

What dose did you start at and what are you at now?

[Healthworker in reply to PMRpro]

started on 40mg and currently on 10mg

[PMRpro Ambassador in reply to Healthworker]

That is an incredibly fast reduction in dose for GCA and it is possible you have overshot the dose you need at present to manage the inflammation. Do keep an eye on the headache and if it gets any worse, get in contact with your doctor urgently.

You don't take a course of pred and aim straight away to get off it - you are looking for the lowest effective dose that managed the symptoms. It sounds as if you have been led to believe you need pred for about 9 months but that isn't the way it works - GCA lasts at least a couple of years and a much more common duration is 3 to 5 years UNLESS you are also on Actemra/tocilizumab in which case it is possible for half of patients to get off pred in 6 to 12 months. But even that is optimistic.

[Healthworker in reply to PMRpro]

I have been reducing pred on a six week basis as prescribed by my consultant and this is being monitored closely

[DorsetLady PMRGCAuk volunteer in reply to Healthworker]

At higher doses of Pred you may get away with faster tapering, but your reducing is quick as PMRpro said..,sounds as if you have now got to the level that is definitely too low.

So yes you should be concerned….you need to speak to your consultant sharpish considering Christmas is almost upon us - you need to get things sorted out. Whether it’s your GCA or not, any new head pain needs to be checked.

[Healthworker in reply to DorsetLady]

thanks for your advice- at my last appointment with my consultant I told her about one isolated incident of dull ache but she advised me to carry on with the timetable of pred as agreed

[DorsetLady PMRGCAuk volunteer in reply to Healthworker]

Not trying to alarm you or dismissing your consultant’s advice, but having heard others stories -and as someone who had GCA, I’m just suggesting it gets followed up.

It may be nothing, and you may be one of the lucky ones who sails through GCA (I did once diagnosed, but that’s another story) but it shouldn’t be dismissed as lightly as your consultant seems to suggest.

[Healthworker in reply to DorsetLady]

thankyou for your reply - I have been in touch with my consultant secretary and a nurse will be phoning me later this afternoon

[DorsetLady PMRGCAuk volunteer in reply to Healthworker]

Good ,please let us know what she says

[Healthworker in reply to DorsetLady]

they have suggested I make an appointment with my gp tomorrow to have further blood tests and to be checked over - possibly increasing pred

[DorsetLady PMRGCAuk volunteer in reply to Healthworker]

Sounds like a plan - but you won’t get results of blood tests until after Christmas so make sure they are fully aware of symptoms. .. and good lucks

Always better to be safe than sorry.

[piglette]

How did they diagnose you? Did you have any tests? What were your problems when you first went for diagnosis if you are now asymptomatic?

[Healthworker in reply to piglette]

I had to undergo 6 scans before diagnosis

My symptoms were shooting pains across my head

[SnazzyD]

Hello, I’ll echo what others say. I’ve been through uncomplicated GCA myself and it took about 3.5 years. Having hung around on this forum since 2017, it is quite clear that far from having a medical consensus, there seems to be a big variation of opinion on the treatment of GCA. It doesn’t seem uncommon for specialists to have incorrect ideas about the nature and trajectory of this disease. This is in spite of published guidelines which carry the rider that the patient’s dosing of Pred needs to be tailored to the patient. About 7 months does not feature anywhere in any guidelines which tend to be on the quicker side for many as it is. Given the stakes here and the rapidity with which things can change plus your unusual decent in dose, we’re jumping up and down out of concern.

I do worry about your statement about being monitored closely, especially at the moment. The fact that you are having to ask us first appears to suggest that you don’t have a rapid hotline that you feel relaxed about using. Doing blood tests isn’t always the answer either because those can lag behind what is happening internally. Mine were never raised at any point so I was treated on symptoms only. Do let a doctor know before the weekend so at least you can have a pre-agreed dosing plan if things get worse, especially withA&E’s everywhere being clogged up.

I’ll just add that it is worth making sure you don’t have stiffness in your sternokleidomastoid muscle which can mimic GCA and which caused me to think I was flaring a few times! Have a read of this. Saying that though, given your early stage of GCA I would only have this intervention as a parallel line of enquiry, not a do this first and then see.

healthline.com/health/stern...

[Healthworker in reply to SnazzyD]

thankyou so much for your reply which I found very helpful

I have been in touch with my consultants secretary and a nurse will be phoning me later this afternoon