All the tick boxes for GCA with ringing in the ears?

[strawclutching]

Hello everyone,

After nearly three weeks since the preliminary diagnosis for GCA and taking 40 mgs Prednisolone, temporal arteries are still pronounced though not so tender and I have some sort of tinnitus. Should these symptoms still be present after 17 days on the Pred? My ultra sound of the head is on 13th November - had to cancel first appointment as I was admitted to a different hospital with acid reflux burns, palpitations, etc due to not being prescribed Omeprizole at the same time. I'm also an insulin dependent diabetic, so the steroids have knocked my glucose control for six. Any advice or information would be gratefully appreciated.

[PMRpro Ambassador]

Personally I'd wonder if the dose is high enough - it is the bottom end of the range for GCA. The tinnitus may take a while to go away altogether.

[strawclutching in reply to PMRpro]

I wondered that too. But then I saw the dose reflects your weight, and I'm only 50 kgs. I read 1mg Prednisolone for every kilo of weight so, maybe I should have been started on 10 x 5 mgs not 8. I'll have a word when I go for the ultrasound - if I get some sort of consultation first. Thanks for your thoughts. Much appreciated.

[PMRpro Ambassador in reply to strawclutching]

"I saw the dose reflects your weight"

No, not generally, that is something a minority of doctors say. The usual starting dose for PMR is the "lowest effective dose in the range 12.5 to 25mg" - usually starting at 15mg and upping it to 20 or 25 if the effect isn't as good as hoped for. For GCA it is 40mg and up depending on the symptoms - jaw pain and/or visual symptoms should be approached with a higher dose. But doing it by weight is mainly seen as setting the MAXIMUM dose rather than the minimum dose.

There are several factors other than the patient's weight that are significant - the amount you absorb ranges from 50% to 90%. A 50kg patient might only absorb 50%. Or it might be 90% - and the same the other way around. You don't know the disease activity - a higher one will need more pred and vice versa. So they settle on a dose that is generally expected to be enough - and adjust if it isn't. And then they titrate the dose (as it is called) - taper the dose to find the right dose for this particular patient. If they are on too much the taper will be relatively easy and they will get to where they need to be relatively easily.

[strawclutching in reply to PMRpro]

Thanks for all that info and for being so clear about it. I have an eye infirmary appointment this afternoon as I was looking through bands of clouds this morning. Hopefully it's just precautionary and not a sign of damaged optic nerves. Thanks again.

[DorsetLady PMRGCAuk volunteer]

How about any other symptoms?

Like PMRpro says, you may need a slightly higher dose, or you may need to be a little more patient. Sometimes initial dose does take longer than some doctors think to get to grips with symptoms.

[strawclutching in reply to DorsetLady]

Hi Dorset lady,

Loads of classic symptoms at the onset. Aching jaw, sore tongue, tender scalp, stiff neck, fatigue, sleeplessness, earache. My GP told me to get my teeth checked out, which I did, and the dentist said teeth are fine and gave me a print out off the internet about Temporomandibular joint disorder. Had to go to A and E in the end where my blood ESR was 63. Don't know whether to wait for my scan on the 13th or ask my GP sooner about the dose of Prednisolone. Thanks for the quick response. I'm scared to bits.

[DorsetLady PMRGCAuk volunteer in reply to strawclutching]

Discuss with GP - I don't think being on, say another 5 or10mg steroids will adversely affect the scan, as you are already on 40mg - but if I'm wrong, I sure someone will correct me.

[strawclutching in reply to DorsetLady]

Thank you DorsetLady. I have lots of appointments coming up, so will be able to understand what is going on soon. Thanks so much.