GCA

[Flrchrs]

Three weeks on and they have diagnosed GCA with a temple scan yesterday. My doctor put me on 40 mg two weeks ago as my bloods showed high inflammation markers. Will be more happy once I’ve seen the rheumatologist as don’t think the 40 is enough still suffer bad head aches and pains behind the eye . Having to take co - coda oil all the time. I did take an extra 10 prednisone yesterday!

Thinking back guess this was starting before Christmas as I was diagnosed with a rotacuff injury (over phone). Now this . Only say the other day at last finished with tablets now PMR has gone.

☹️

[SnazzyD]

40mg can be ok as a dose but not for everybody so I’d say three weeks and still having breakthrough symptoms justifies a call to the doctor to tell them this. You have had a confirmed diagnosis so hopefully you’ll be spared any theories that it might not be GCA if 40mg not working by any docs who don’t know better. You should have been given an emergency contact but if not start with asking hospital for the rheumatology specialist nurse. Also, go via the GP because sometimes those nurses don’t get back to you quickly. You may have to remind the receptionist that this is urgent because likely they won’t know about GCA. If no result in a couple of hours dial 111 or possibly even do that first. Some would say skip all that and go to A&E but it depends on how busy they are and if they triage you as urgent. What you need is any medic to tell you to pop 10-20mg and then the appropriate person can give you a plan later.

[Flrchrs in reply to SnazzyD]

Thanks for advice. Got a call later with doctor.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear news, if you don’t think 40mg is enough, then you need to speak to doctor, you really shouldn’t be self prescribing…I know you have experience of PMR, but the high doses of Pred required for GCA are a different matter.

Hopefully you will get a quick appointment with Rheumy, but although there should be, there’s no guarantee of that.

In the interim, you do need your GP to be onside and proactive in contacting hospital now a diagnosis has been made and seek advice about dosage. He obviously did the correct thing initially, so that’s a good sign he does have an understanding of GCA.

Good luck, and any queries…..we’re here.

[Flrchrs in reply to DorsetLady]

I’ve just called surgery wait for them to call back. When taking pred do you take the dose in one go as I’ve been doing, or spread through the day . Just says take 8 tablets a day?

[DorsetLady PMRGCAuk volunteer in reply to Flrchrs]

Good…take them all in one go - that’s what GCA needs. As SnazzyD says 40mg should be enough, but sometimes it does take a bit longer for headache to go completely.. mine took a good 2 weeks but I was on double the dose you are. ….you may find just an extra 5mg is enough. ..and obviously the higher you start, the longer it take to reduce.

Please let us know how you get on, and hopefully you can now stop the Co-codamol.

[Flrchrs]

Okay I’ll have them in a minute

[PMRpro Ambassador]

Quite how you can diagnose rotator cuff injury over the phone is beyond me - and with a history of PMR anyway, it is all too likely that the "rotator cuff injury" was actually "PMR" heralding the GCA developing,

If it gets worse - especially the headache and eye symptoms, head for A&E and emphasise the GCA diagnosis. It is a medical emergency - but you need to use the emergency word, urgent isn't enough.

[Flrchrs]

The doctor has prescribed 60 mg a day till Monday . Also asked for 10mg tablets as so many 5mg. Letter arrived this morning 7 February to see rheumatologist.

[DorsetLady PMRGCAuk volunteer in reply to Flrchrs]

Ok/ thanks for update - hope all goes well…

[Nextoneplease in reply to Flrchrs]

Hello Flrchrs

Just caught up with your news. Sorry that it did turn out to be GCA (not TMJ as I recall was originally thought). Glad though that you were able to get medical attention eventually and that you’ve just been put up to 60mg. Hope the headaches resolve soon and you get a helpful rheumy. All the best to you xx

[PMRpro Ambassador]

Do you still have symptoms of PMR?

[Whittlesey]

In the U.S. when GCA is diagnosed, they usually start with 100mgs per day for a week. Then 90 mg next week. They begin to taper at 80 mg the next week.

The 100 mgs surely and usually hits it.

I worked with the pred taper on this site, as one of the best. My doctor wanted a quicker taper, but the ' slow and steady' taper works better.

40 mgs does seem low to initiallñ deal with Gca.

Hope this helps.

All my best, Lynn -- Whittlesey.

[Flrchrs in reply to Whittlesey]

Think I needed an higher dose as things seem a little better on 60mg . Veins in temple and in my hair are still sore . Pain behind the eye seems to have subsided. Hoping for a good nights sleep 😴