GCA symptoms once treatment has started

[Dochaz]

I started on Prednisone 3 months ago after a biopsy confirmed GCA. Gradually reducing the amount, month by month. But whereas I never experienced the usual headaches prior to diagnosis, I am now getting them (both sides, temple area). Has anyone else had new symptoms develop 3 or 2 months in? Does it mean Prednisone isn't working? My Dr seems to think it's nothing to worry about.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

If your headaches are returning then I would suggest you have gone too low on your Pred.

What dose are you on now -and how have you tapered from starting dose -and what was that please?

Your doctor may think it’s nothing to worry out but I disagree -certainly sounds like a flare to me.

But a bit more info as requested would help.

[Dochaz in reply to DorsetLady]

I started in March on 40 mg/day for a body weight of 51 kilos (about 8 stones). After 1 month my doctor reduced to 35 mg, and then 30 mg this month despite the headaches. No other symptoms (and no major side effects apart from insomnia) and sedimentation rate relatively stable, though slightly up last time. Blood tests every 2 weeks. Maybe I just wasn't tuned into the condition and not taking account of headaches because the fatigue and general aches drowned them out!

[DorsetLady PMRGCAuk volunteer in reply to Dochaz]

Well with a combination of headaches and a raised ESR your doctor really shouldn’t have reduced you. What he should have done was leave you at 35mg and retested your bloods to see if there was any change. Depending on whether blood still raised or increasing and still headaches he should have put you back to 40mg.

40mg is recognised as a starting dose for GCA- but isn’t always quite enough - irrespective of weight -it’s the activity of the disease that’s most important.

Unless you can pin the headaches on anything else - have you had a sight test recently?

I think you should assume it’s a flare -so please discuss with your doctor -and take the appropriate action.

As I well know GCA is not a disease to take lightly, by you and especially not by your doctor.

Let us know how you go on please.

[Dochaz in reply to DorsetLady]

Thanks for the feedback. It's a big help. I had eye tests done last week. Nothing to report. All seems to be fine. I have another blood test tomorrow and an appointment with my doctor the day after. I'll see what he thinks.

[PMRpro Ambassador]

My immediate thought is that the dose you are at now is slightly too low to manage all the inflammation - the high dose didn't cure anything, it was just more than you were likely to need and then youtaper to find the right dose for you at present.

Keep an eye on those blood tests - if it rose last month that could be a flag that you were already too low and the correct procedure is to check it again to see if there is a trend. If it goes up again - it's a red flag.

And by the way - headache is a presenting feature (why you went to the doctor) for less than half of patients and only about 70% of patients mention headache ever. It is common - but really doesn't even qualify as "usual" whatever the average doctor thinks.

[WaltzG in reply to PMRpro]

Hi interested to hear headache is not always presenting feature what is/are most common if GCA becomes temporal? Thx

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

From rarediseases.org -

GCA Signs & Symptoms

“Common symptoms when the temporal arteries (located on each side of the head) are affected are headaches with the artery being tender, thicker, nodular, and pulsating early-on but may become blocked later-on. Headaches are present in more than 60% of patients. The temporal artery and its parietal and frontal branches may bulge while appearing twisted/ knotted under the scalp and feel tender with skin edema and redness and may become pulseless.

Visual disturbances like double vision or transient loss of vision can occur in one or both eyes that are not long lasting. However, serious complications can occur such as blindness that occurs in 15% to 30% of patients that is not reversible with steroids. Blindness in just one eye occurs as well, but if left untreated 25% to 50% of patients can experience loss of vision in the other eye.

Arteries in other parts of the body can be affected as well. The aorta, the largest artery in the body can be affected as well and cause arm pain or increase risk for severe complications such as thinning of arterial wall in the artery leading to aneurysm and rarely arterial dissection. Risk for stroke and nervous system disorders can occur but is uncommon.

Inflammation throughout the body is common as well and can present with fever, fatigue, weight loss, discomfort, night sweats, depression, and anemia. Respiratory symptoms can also occur with dry non-mucus cough.”

Full info here - rarediseases.org/rare-disea...

[PMRpro Ambassador in reply to WaltzG]

As I remember most of the listed symptoms have a similar incidence - it is a set of symptoms that makes up a more obvious picture suggesting it may be GCA. Every patient is different which just adds to the confusion and of course the fixation some GPs have with "only one complaint per visit" adds to the problem, especially for a patient without the excruciating headache they expect. They also often expect the headache to be temporal - which it isn't always, GCA is very partial to settling in the occipital region and that is when vision is most at risk. The name "temporal" is also misleading, compounded by the temporal artery being the biopsy site - that isn't because it is where GCA is most likely/risky, it is purely an easy to get at, non-essential artery that is often affected.

But the main point is that there is no "textbook" patient - except in a textbook!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Last sentence -very true..I had some obvious symptoms but not all. ..and yes, tine they stopped the “temporal” reference -as you know mine wasn’t ever affected.

[WaltzG in reply to PMRpro]

Oh dear how confusing thx help

[Nextoneplease]

I agree with DorsetLady and PMRpro. Watch those sedimentation rates and look out for any other symptoms like visual disturbance or jaw claudication. If the SED rate isn’t down this time, I’d suggest talking to your GP about raising your dose rather than reducing it. Best to get on top of GCA before reducing dose. I started on 40mg by the way, but many people are on higher doses to start with, it wouldn’t be unusual.

Hello and welcome by the way xx

[SheffieldJane]

What is your dose of Pred? You really shouldn’t be getting breakthrough symptoms at this stage. I would be worried that my doctor was being too complacent.

[Dochaz in reply to SheffieldJane]

I started on 40 mg, then after a month 35, now on month 3 at 30 mg a day. I have vastly improved energy levels and no more muscle or joint pain which has improved my quality of life tremendously. The only thing I have started to experience (that I didn't have before!) is intermittent headaches.I'm off now for new blood work... I'll see if things are on track or not and get back to my doctor. Many thanks for taking an interest! Take care 💗

[Viveka]

I think all sorts of new symptoms can arise at any stage on the GCA journey. It can be very difficult to know whether these are due to GCA breaking through the pred, the pred itself or tapering the pred. Also symptoms can come and go within a month of being on a dose - they may pop up after a week or so, but if you are lucky they may settle again.

It's great you're getting such regular bloods. Is your ESR still high - suggests GCA activity. It can be helpful to keep a diary of symptoms to help you get to know your body and identify patterns. How intermittent are your headaches, for instance. Unfortunately GCA tapering can be a bit of an art form. But you will be on lower doses before you know it and things will get better!

[Richmond162]

Hi. I too am suffering with head pain, not a constant headache, but jabbing pains on right side of head and also temple pain both side, although diagnosed on left, after being diagnosed with GCA this year and PMR in October2021. Started at 40mg, gradually have reduced to 15mg as per orders and that’s when it all started. I decided to up to 17.5 but still jabbing headache,but today have gone up to 20mg as I can’t seem to function properly. I was just feeling ok and able to do more walking as the high dose made me quite giddy and felt unsteady on my feet, now I feel back to square one! I am awaiting reply from Rheumy team to see if I have done the right thing! Oh dear what have we all done to deserve this.

[Dochaz]

I'm in France and have faith in the specialist who diagnosed the disease and is checking in with me on a fortnightly basis. He's an internist and picked up on a thickening of the abdominal aorta wall that no one else noticed. I think he knows what he's doing 🤞.But, just to say to all you people out there going through it... thanks for your support, suggestions, good vibes ❤️. I'm so glad to have stumbled across this group! There seems to be nothing in France.

[Jsaoughs]

I have the same issue. Headaches are getting more frequent and bothersome the lower I get on my taper. I was tapering 2.5mg weekly on my Prednisone but my rheumatologist now has slowed me down to 2.5mg taper every 2weeks to see if that helps the headaches and scalp tenderness. We will see…. Jackie

[DorsetLady PMRGCAuk volunteer in reply to Jsaoughs]

If your headaches are increasing then you really shouldn't be decreasing Pred... changing it from 2.5mg every week to 2.5mg a fortnight isn't going to make a lot of difference. Too low a dose is too low...

According to these guidelines - academic.oup.com/rheumatolo...

A Return of headache symptoms indicates a possible GCA relapse without ischaemic manifestations, and the action should be to - Return to previous higher prednisolone dose.

[Dochaz]

What would be an "acceptable" increase in ESR when on Prednisone? I just got my blood results and I'm up from 18 mm last week to 22 mm after 1 hour today.I know that's more than the norm, but I WAS originally at over 110 mm when I first got diagnosed with GCA. So maybe 22 isn't so terrible????Not sure whether to worry or not!

[PMRpro Ambassador in reply to Dochaz]

It isn't a massive rise and could be within normal variation - but the correct procedure is to repeat it in a couple of weeks at most and establish if there is a trend, What is the lowest your ESR ever got to? That is a guide - it shouldn't rise too much from there - but all sorts of things will send it up, a cold, an injury, all sorts of things. Absolute figures don't mean too much - but a steady rising trend without any evidence of colds or other infections is of interest in the context of a flare. And together with any suggestion of PMR symptoms - always of significance.

[Dochaz in reply to PMRpro]

Thanks for the feedback. My PMR symptoms have completely disappeared. Such bliss! More tests in 2 weeks... 💗

[PMRpro Ambassador in reply to Dochaz]

PMR symptoms should disappear at GCA doses - since it ispart of the whoclinicalpicture.

[Grammy80]

You have received solid input from everyone. I'm in the states and felt alone until I found this forum. When my journey started in 2019, and I did lose sight in one eye, I started at 125mg, the taper to 80mg. Slowly started coming down and it wasn't until last September I was approaching 20 I think and I had a flare, back up to 40. From September of 2021 to May 12...I just got to 9. I was tapering 2.5 per month until I reached single digits and now it is 1mg drop every six weeks. My body could never have tolerated the speed with which you have been tapering. I know each of us is unique but having had issues...the slower the better for me. I wish you all the best.

So happy you found the group...their support has made a huge difference for me. I'm in the states, and even though a US doctor was involved with Dr. Dahsgupta in the study for Actemra...we are way behind the UK in research. This is a great group and welcome💕