Advice on a suitable maintenance dose of Pred?

[ThisTooShallPass]

Hello everyone! It's been some time since I've posted, although I drop in regularly to learn from the valuable advice/experiences of you all. No better place!

I've been getting treated for Occult GCA since April 2015. "Occult" is what they call it when you don't have any other symptoms of GCA other than vision loss. I woke up back then with significant vision gone. I was on 40 to 60 mgs of Pred for months, fun (not), and have made it down to 4.5 mgs now. I have an appointment with my Rheumy this week, and I know her objective is to get me off Pred entirely. So, it's time for she and I to have a talk about that.

My objective since day one was/is to not wake up some morning fully blind. It's the reason why I endured months on high dose Pred, and the fall out from that (a spinal compression fracture and now cataracts). Where there is no way of knowing whether GCA is still present in our bodies, I want to make sure I do what I can to minimize the risk of further vision loss.

Are there others out there who are on a maintenance dose of Pred for GCA? What dosage is desirable for maintenance, and why, and how long do you expect to be on it?

Any advice would be greatly appreciated, so that I can have a good discussion with my Rheumy. Although I would love to be off the beast of Pred entirely, I'm prepared to stay on a maintenance dose forever, if that's what it takes.

Thanks for any guidance!

[PMRpro Ambassador]

Personally I can't see how a low maintenance dose of pred would make much difference.

But once you are off pred they can do PET-MRI to see if there is any evidence of inflammation anywhere outside the cranium.

You might find this interesting

ard.bmj.com/content/early/2...

and maybe worth bringing to the attention of your rheumy if he isn't aware of it.

[ThisTooShallPass in reply to PMRpro]

Thank you PMRpro! Interesting reading, that I will share with my Rheumy. She is a good one, easy to talk to, young, smart, and willing to work within my comfort zone.

I guess when you have few options, other than blind luck so to speak, you need to cling to anything that will make any difference. I have an unreliable CRP (according to Dr. Hayreh), no symptoms to let me know if I've reduced too far to keep any GCA suppressed, changes in my vision all the time due to light sensitivity and the cataracts.

And if everything remains stable at 2 or 3 mgs of Pred, why not keep it that way? Why risk further vision loss by getting off Pred? Unless there is a proven, reliable way to make sure there is no GCA present, I am hesitant to take the jump to no Pred.

I'll talk to her about her view of Pet Scans and any other way to monitor.

[Hidden]

I don't confess to having any real expertise at all. I can tell you that my friends husband spent several years on a maintenance of just below 7mg dose for GCA. His gp said she couldn't see why not especially as he struggled when taking a lower dose. He was in his early-mid 70s onwards. His mother also had the same and I believe she took maintenance dose too. So it's not without precedence.

I think you are right ..you need to have discussion with rheumy. The man I mentioned was terrified of losing his sight and made persuasive argument to keep taking pred at low dose.

[PMRpro Ambassador in reply to Hidden]

It's certainly something that wouldn't bother me - but I am concerned it might convey a false sense of security.

[Hidden in reply to PMRpro]

I think it did give him a sense of security but like you say that was probably false. I presume if he had got GCA symptoms he would have reported to Dr asap. I presume the problem with occult GCA is there little warning before sight effected??

[PMRpro Ambassador in reply to Hidden]

Not just little - often none at all. Which is the scary part.

[ThisTooShallPass in reply to PMRpro]

Not scary, just the simple reality of it. So, if 2 or 3 mgs of Pred can buy me time before my ESR may show a problem, or even if it gives me a false sense of comfort, I'll take that!

[PMRpro Ambassador in reply to ThisTooShallPass]

Just occurred to me - I wonder about the rationale of some Actemra which seems to do a lot to abort the GCA mechanism...

[ThisTooShallPass in reply to PMRpro]

I just read about Actemra. Scary potential side effects. I'd rather deal with this by reliable monitoring, versus another drug. But, I will talk this over with my Rheumy, and try to keep an open mind. You do what ya gotta do! Thanks again.

[PMRpro Ambassador in reply to ThisTooShallPass]

Do you use Tylenol? It has scary potential side effects!

[ThisTooShallPass in reply to PMRpro]

As a matter of fact, no, I don't use Tylenol. But I catch your drift. If another pill is a solution, I'll begrudgingly consider it.

[ThisTooShallPass in reply to Hidden]

Thanks Poopadoop, appreciate you sharing your friend's experience. I can't say I'm terrified of losing my sight. But I would never forgive myself if I didn't do anything within my control to minimize the risk of further loss. And we with Occult GCA do have to fight for that cause, as all the Doctors are typically in a rush to get us off Pred. My point to them all along has been, the undesirable side effects of long term Pred use are treatable. Blindness isn't.

[PMRpro Ambassador in reply to ThisTooShallPass]

Exactly. No pred side effect is as bad as the ultimate GCA effect...

[DorsetLady PMRGCAuk volunteer]

Hi ThisTooShallPass,

I know exactly where you are coming from (as you well know) but I’m not sure, like PMRpro, that a very small dose of Pred would protect you sufficiently if your GCA flared.

As you are experiencing problems with cataracts I am hoping you are under the care of an Ophthalmologist as well and getting regular checkups. They should pick up any significant changes.

Take care.

[ThisTooShallPass in reply to DorsetLady]

Hi again. Thanks for commenting.

I liked Dr. Hayreh's assertion. He more or less suggests (in my words, not his), that when it comes to Pred dosage and reduction, size does matter. In his experience someone can be fine at whatever dosage, let's say, 4 mgs, and then unexplicitly flare when reduced to 3.5, no matter how slow the reduction. So the way I'm thinking, if I'm OK if I get to 4, why push the risk further? Leave me on a maintenance dose indefinitely.

If I should flare at this point, or in the future, it will only be my ESR to give any hope of advanced warning. That's the way it's been for almost three years now, so nothing new. And you can be sure, if my ESR should start going up, I'll be popping some mucho Pred!

I've had the same Ophthalmologist since the start of this who I see regularly, and also an Optometrist. I could have the cataracts removed now, but I've opted to have one year, 2018, without the drama/stress that was present the last three. I get new glasses next week, which will help. I'm hoping they will take me through until next year. But if they don't, I'll have to consider having the removal sooner. Fingers crossed!

[DorsetLady PMRGCAuk volunteer in reply to ThisTooShallPass]

Hi,

I’m not disputing that there can be a difference between 4mg and 3.5mg, in fact I very often quote the fact there can be considerable difference for some patients. What I was trying to convey that 4mg is unlikely to contain a GCA flare.

I misinterpreted your post - when you said you get no symptoms I presumed that meant no raised markers either! But if that’s not the case I’m guessing you have them checked more regularly than some on here, so can act accordingly.

As for cataracts (or in my case - cataract!) I got to the stage where new enhanced prescription was not going to be a sensible option according to optometrist, so it was removal or bust! As mine had deteriorate quite rapidly as well upcoming trip to NZ I went for it!

Good luck when you do decide to take the plunge, and much less dramatic or stressful than you might imagine.

[ThisTooShallPass]

Yes, I'm very fortunate. My ESR seems to be responsive. And I have it checked every two weeks.

I'll only be getting one cataract removed too. No sense in the other.

Thanks again, and all the best!