GCA Flare Concerns

[montebello]

Hi all,

I'm a GCA patient, having been diagnosed about 7 weeks ago. I started on 60 MG PRED, and have followed my GP's weaning schedule of 60 for 2 weeks, 50 for 2 weeks, 40 for 2 weeks, etc. and am presently on 30 MG. From reading everyone's advice and comments on this forum, I know I am supposed to watch out for flares as I come down from my 60 MG and have 2 questions regarding this.

First, I'm not sure how "severe" a pain (headache, etc) has to be to be considered a flare. I supposed I super-sensitive (aware) of any pain in my head right now and don't want to cry wolf at every twinge. So are flares usually just as painful as the original headache? Or do they appear in different places to varying degrees? For example, I have been experiencing slight achiness behind my left eye that comes and goes -- maybe 2 or 3 on a scale of 10. I simply don't know how "reactive" I ought to be.

Secondly, when one does experience a genuine flare and does NOT increase the prednisone dosage, does that put one at risk of blindness and stroke just as if one had not been treated at all?

Thanks, as always.

[PMRpro Ambassador]

Impossible to say concerning the risk - but theoretically, a flare can be as bad as the original. If the symptoms recur it is because the current dose of pred is not enough to combat the inflammation - and you can't know how bad.

[Grammy80]

Of course you are extremely sensitive and aware of what is going on in your body, you aren't certain what to do. I sympathize with you. How about calling your doctor? rheumatologist? or just GP?

I can look at my old calendars and I definitely wasn't dropping 10 mg every two weeks. I'm no doctor...but...I've been at this for three years and was still at 40 mg after more than two years. It was just this year I started reducing from 40. I'd suggest asking your doctor if possibly the taper is too fast. We are all different, but we all deserve the best shot possible. It is far better to go slowly than face a serious issue. See what he says, I guess I should say he/she~! For me, taking prednisone has never been a issue as long as I could protect my sight.💞 You are never alone.

[montebello in reply to Grammy80]

I appreciate your compassion. I wouldn't have a problem increasing the dose of PRED except for the extreme fatigue im dealing with. I had no fatigue prior to taking the PRED, and now I'm almost incapacitated. That, combined with the blurry vision that occurred immediately after taking PRED lead me to think i need to taper as directed UNLESS i experience a flare.

As for the doctors, they are useless to me right now. Im awaiting a rheumy but wont get to see him till end of NOV. This forum is my main source of help.

Thanks again

[Grammy80 in reply to montebello]

I was thinking, have you tried calling the rheumatologist's office twice a week to see if a cancellation is available. If they have a no show or blank space they love to fill it. Just a thought.💕

[montebello in reply to Grammy80]

Yeah, I am on their cancelation list as number one priority. They called me once but it was the day my daughter had her c section. Here's hoping fir another call soon

[Grammy80 in reply to montebello]

Great! I forgot, congratulations Grampa!👨🏼‍🍼👼🏼

[DorsetLady PMRGCAuk volunteer]

This may help you decide whether it’s a flare if not -but would say your taper is a bit on the quick side. The the fact you are suffering fatigue suggests your GCA is very much alive and kicking - you need to slow your tapering-

healthunlocked.com/pmrgcauk...

[montebello in reply to DorsetLady]

I hear you dorsetlady but why didn't i feel fatigued UNTIL i started the PRED? I guess i could increase the dose to see what happens but gees.....

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Well in some the Pred itself can cause fatigue…… but then so can reducing too quickly. For some people it’s difficult to know what is to blame…..

If you are feeling okay then don’t increase Pred, but I think I would be staying on current dose for longer to see if that helps…

[Viveka]

What doctors don't tell you is that you can still get symptoms when you are tapering. It can be part of the settling down process. If they told us that it would stop a lot of worry. All I can say is that I was advised to ignore low level intermittent symptoms that didn't get any worse. (I was reporting occasional scalp aches (less than 3/10 pain scale) several times a day and sore spots on the scalp that came and went, and some tingling).

But if the symptoms get worse eg more intense, more frequent then it is likely to be a flare. And obviously any red flags like eyes or jaw, it's straight to doc.

I was also told that 20mg and over is enough to stop major problems in 'most' people.

I think that most people face flares when they get to lower doses, under 10 - though of course some do flare at higher doses.

There is also the issue of taking high/medium doses of pred brings all sorts of side effects including odd aches and pains and fatigue. Also, as you are reducing every fortnight you are barely over the withdrawal phase when you are into the next drop.

The high levels of pred are to mop up the high levels of inflammation, then we are reducing to levels that maintain control over inflammation until it burns out. Regimes that might suit better are staying on 30 for a month, then dropping 5mg to 25 and staying there for a month etc.

Keep a symptom diary to see any patterns and ask your doc directly what should cause you worry and what is to be expected.

Don't know about the second question.

[PMRpro Ambassador in reply to Viveka]

"I was also told that 20mg and over is enough to stop major problems in 'most' people"

Obviously hadn't met as many patients as I have who have had a return of symptoms at 30 and 40mg pred.

[Viveka in reply to PMRpro]

Thanks for clarification. This wasn't about return of symptoms - I asked if the low level symptoms I was experiencing could lead to major problems re sight and the answer was that 20mg was enough to stop that level of inflammation in 'most' people - though by implication not all.

[PMRpro Ambassador in reply to Viveka]

If the symptoms return that implies the inflammation has returned and you really can't tell how bad it is. If 20mg was enough - why don't they use that rather than the higher doses? I've heard this claim before - I don't buy it.

[Viveka in reply to PMRpro]

This is just my take on it, but the reasoning is that if they started off on higher doses, most GCA people won't get into immediate trouble on 20mg - though if they ignored a flare they certainly could in time.

But also possibly some people could be treated from the start at the same levels as PMR folk eg 20 and below; the problem is that medics don't know enough about the condition to be able to identify who this would be ok for, so everyone gets 40 as standard (or 60 - 80 if more specific concerns).

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

guidelines say -

Uncomplicated GCA (No jaw or tongue claudication or visual symptoms):

. Prednisolone 40-60 (not <0.75mg/kg) daily until resolution of symptoms and laboratory abnormalities

Complicated GCA:

. Evolving visual loss or history of amaurosis fugax: i.v. methylprednisolone 500 mg to 1 g daily for 3 days

. Established vision loss—at least 60 mg prednisolone daily

I think you’ll find in uncomplicated GA most patients are commenced on 40mg..and I doubt very much that 20mg would protect sight… I certainly wouldn’t want to risk it.

[Viveka in reply to DorsetLady]

We can't take risks now, but it would be good if in future diagnostic advances could identify who needs what level of pred. Also which are the arteries being affected by GCA. I guess it's possible because diagnostics seems to be an area in which they do make advances because it impacts on so many conditions.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

If only it were that simple…..but we live in hope.😊

[PMRpro Ambassador in reply to Viveka]

That is exactly what the dose titration does - identifies the right dose for the patient. You can't really identify the specific arteries in cranial GCA but you can in extracranial GCA - using PET-CT before starting pred at all. Trouble is - not all patients with extracranial GCA are seen first by a rheumy since they often present with "just" PMR, that requires a working fast track set-up and an almost dedicated PET-CT scanner which, given the cost, isn't going to happen.

[montebello in reply to DorsetLady]

I wish i knew if my vision symptons were GCA related or prednisone related. I have fuzzy, somewhat blurry vision that started immediately after going on 60 mg prednisone and has not improved with tapering diwn to 30. Any thoughts?

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Unfortunately I can’t answer that, but blurriness is certainly a side effect of Pred -and it affects many people on much lower doses than 30mg.

I can only suggest you request an appointment with optometrist to get eyes checked out, just to make sure sure it’s not GCA.

[montebello in reply to Viveka]

Thank you Viveka. Very helpful

[Happyexplorer in reply to montebello]

Hi Montebello, Not sure if this is helpful, but my experience has been an increase in minor symptoms on a new tapered dose, might be head pain, jaw stiffness or flickering nerve tingles in cheek or the eye socket 'aches' you describe. If mild, I've ignored for 24 hrs or so then if persistent have added pred by 1mg, often this settles the 'twinges' and I can restart the the full taper in a couple of days. Never considered these a 'flare' as such. It took me 4 mths to get down to 20 mgs, which was a sticking point, and from then on it was very slow going, stuck on 20 and then 16 for weeks. That was despite having weekly Actemra (from which I've had no side effects and does make it easier to taper, the early addition of methotrexate pre Actemra was a nightmare for me) Now 14 mths later I'm tentatively trying 5.5mg, plus Actemra. I have been lucky avoiding sight issues, which I understand can come on suddenly. Biggest issue for me has been the life changing fatigue, which has very gradually improved as the Prednisone dose decreases. Everyone's journey is different and this forum is brilliant for info and reassurance! Best of luck

[montebello in reply to Happyexplorer]

Thank you Happyexplorer. This is indeed very helpful.

[GCAYme]

We are similar ages but when I started on 40 mg prednisone I had too much energy. Cleaned every closet and drawer in the house. Since you reside in the US, I would push hard for a Rx for TCZ -Actemra. It’s expensive but effective. I have been on weekly Actemra injections since positive biopsy 8 months ago and tapered prednisone fairly quickly from 40 down to 4 now. Will be at zero by December. My energy levels are somewhat less as I taper but nothing like you are describing. Still hiking, biking and camping at 74. No side effects from the Actemra at all. Get in to that Rheumatologist asap.

Without the Actemra you are probably tapering too quickly.

[montebello in reply to GCAYme]

Thanks for this. Before my fatigue hit, i would NOT have even considered Actemra. I thought that'd be just anither drug my body would have to deal with, and the listed side effects are AWFUL. But now, with the fatigue, heck, well let's just say im more open

[PMRpro Ambassador in reply to montebello]

The listed adverse effects of most drugs are AWFUL!

[montebello]

Thabks fir this very helpful comment