Hello and thank you so much! This is my first post, but I read our posts every day and have since I developed GCA back in 2022. My ESR/Sed rate back then was 107 and severe pain in my left temple. Scared me big time. Started at 40mg pred and have been tapering until today when I am at 3 mg daily. Did not affect my eyes. My question is tapering from here. I think part of my problem is Fear. My GP wants me to taper 1/2 mg every 3 weeks. That seems much to fast for me. He says a change of 1/4 mg pred my body would not notice the difference. It's too small.
I have severe fatigue and sleep a lot during the day. But no pain.
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mackB
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Hi and welcome - what took you so long? Are we that scary?
Well, I think that is ridiculously fast by any standards. The last 3mg are actually likely to be the hardest as 3mg is loads to keep inflammation at bay and replace dodgy adrenal function so there is a double whammy to deal with. You are obviously already suffering adrenal insufficiency. Let your poor body catch up!
And as to whether the body won't notice the loss of 1/4mg pred - that is the entire point. By going that slow, you are less likely to suffer symptoms due to withdrawal of the pred!
Ask Grammy80 about how much pred you need to control GCA. She is on Actemra, the so-called wonder drug in GCA, And when she withdrew the pred - the GCA has flared and she has lost even more vision. Two years is fairly early days - there is no hurry at 3mg, you have done exceptionally well, don't spoil it by rushing this last bit of the track - plenty of distance for there to be a bend you can't see round.
Thank you Pro. I think I will stay at 3 mg for a couple more months, then reduce by 1/4 mg. My pill cutter is lame and has trouble at this level. Need a good one.
I have been kind of floating through days, and I am so glad PMRpro mentioned me and brought your post to my attention. Also, welcome. Stay with us.
I was diagnosed with GCA in 2019 after losing sight in one eye due to never being correctly diagnosed, but that is history. It took me until 2024 to get to 10mg while I was on Actemra. At the end of June 2024, I got to zero. I never ever cared about getting to zero, I wanted no pain and to coast. It only took a month, during which I was taking weekly injections of Actemra before it all came roaring back. First, I got IV Solumedrol at the hospital and was discharged after a day. My rheumatologist wrote a script for me to take 60mg per day if the pain came back. It did in less than 48 hours, and I took 60mg per day until I visited with him three days later. He felt I could drop to 5 mg and wanted the neuro-opthalmologist I was going to see five days later..." to see my eye as it is, not on 60mg." Mistake! When I saw the neuro five days later, I had lost peripheral vision in three areas of my right eye, and things were fuzzy, plus areas that used to be dim were black. Although he never gets involved in prescribing, he made phone calls, and for the following three days, I received infusions of 1250 mg of pred each morning, a 90-minute drip. I didn't know what day it was, but I could still see thanks to him.
Personally, MackB, at this point, I'd take 'whatever' to maintain instead of the 60mg per day I am on now. I don't want to frighten you, but your eyesight must be your goal. There is no glory in getting to zero, and I can attest to that. A friend of mine in NH who was an RN and had GCA for several years... could not get rid of her 1mg dosage without having issues. Finally, she just said, quality of life is more important and took that 1mg for 22 years!
Any reduction I made this past year involved staying on the dosage for four weeks. If I didn't feel great, I'd stay on it until I did, 5-7 weeks if necessary. As this journey started, I would just 'do what I was told' by my rheumatologist. The knowledge and strength I gained from this forum gave me the courage to tell him I wasn't comfortable dropping further. I'd never heard of GCA and I'm thankful you knew enough to be scared or you may well have suffered sight loss. You have received some great advice and are willing to slow down....so glad!! Coast...what's the rush? The doctor thinks zero pred equals success....seeing and no pain is my definition of success.
I'm so glad you're here. I'd be lost without this bunch, and I'm sure you can contribute as well. I know that I will be on 60mg through October, and then? I'm also in the States, and this forum threw me a lifeline in 2019 and buoys my spirit daily. Be well💞
PS You can bet I'll be in the slow taper boat when it happens⛵ (so long!)
Thank you for your insight and history too. I’ve never seen anyone but my GP. He is young about 33 and pretty much lets me plan my own tapering. I saw him Tuesday and took blood intending to run CRP and ESR. My ESR has been running in the high 20’s. If anyone offered me another med other than pred, I would refuse. My PMRGCA group is all I need for information. Sorry you lost an eye! Can’t imagine. They started me at 40 mg while in the hospital. A young doctor there knew right away what was wrong.
I'm so happy that you had the Doctor that you did....he deserves a capital 'D.' I always felt the same way about the prednison, mackB, thrilled to have it; there is much to be said about seeing. I wish you the very best...sounds like you are in good hands~! Hope you were spared the brunt of the hurricane; I did some texting around the state.💞
That’s an ideal world, the body not noticing the drop because it is so small! Resumption of adrenal function by stealth rather than an open battle is what it is all about. Now that you are on such a low dose after only 2 years why is your doctor in such a hurry?
Given you have severe fatigue and you’re under 4mg, I don’t think it’s unreasonable to ask for an early morning cortisol (GP) or even a Synacthen test (hospital based). This would help decide whether your fatigue is due to low cortisol due to adrenal insufficiency or a general brewing increase in inflammation. If you do have adrenal insufficiency it could be said that the doctor is being a bit cavalier in pushing for 0.5mg every 3 weeks when you are already suffering symptoms of it.
Should be able to order a blood test that includes a cortisol level measured on a sample taken between 9am and 1pm. Though nothing surprises me these days ...
The early morning cortisol level check should be routine but the Synacthen test is not simple because it requires an artificial hormone to be injected to mimic the messaging that the adrenal glands get in order to work. It’s easy enough for the patient to undergo but it is more involved and expensive for those doing it. The blood test is a snapshot of your cortisol level at that time. The Synacthen test measures the cortisol after the adrenal glands have had a big hormonal shout.
Also may have posted this query seperately before but when started taper from 5mgs to 4?mgs back in April, may be coincidence but have had several issues since, groin and thigh pain, severe pain in joints on waking , and severe painful hands, seems a coincidence sincevmybrheumy believed In no longer had pmr but arthritis, which came on very quickly, and my markers have neverbl been raised for years being on prednisone, advised can only take extravl strength tylenol which doe snt reduce pain at all
GP is wrong - on both counts. As as we all know the lower you get on Pred, the slower you go with the taper, and at only 2 years in, your GCA still has a lot of life left in it.
Would say your current issue are adrenals related - another reason for slow tapering and tiny steps- see this link and as SnazzyD has suggested maybe them checked.
It's not just the half mg drop, it's the 3 weeks. I have just spent 5 weeks tapering from 3mg to 2.5mg and still feeling very cautious as to whether inflammation might creep up on me if it was a bit too much of a drop and certainly not budging from here for a while.
Surely the idea of "the body not noticing" a dose reduction would be a good thing?!
I think MackB’s doctor was saying that a change of 0.25mg is such an insignificant amount that a patient wouldn’t notice the difference. I would suggest many on here who struggle to reduce their Pred may well disagree with that view.
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