Adrenals etc

[Bramble2000]

Hello everyone, I hope you’re all as well as can be.

My PMR journey has been a rocky one, like many of us. I’ve been suffering for the last 3 years or so, finally diagnosed 8 months ago. I started the Pred and That turned into a nightmare so I stopped it. I recently saw my rheumatologist who is restarting Humira for my AS. He said that I could experiment by taking just 5mg of Pred in the hope (🤷‍♀️) that it might help my PMR. My question is that if I start the Pred at 5mg, will I be able to come off it in the future or am I just as likely to have trouble with the adrenals as people have at higher doses? My Rheumy gave me a lot of grief for not continuing the Pred initially but at my last visit, he said, “The trouble with Pred is, people can’t get off it”! He also said (🤷‍♀️) that by not taking the Pred, I am not more at risk of GCA. Thanks.

[PMRpro Ambassador]

If you have got off pred now, why wouldn't you in the future? You would see fairly quickly if 5mg is making any difference to the PMR and if it doesn't in a couple of months you might as well stop it since you need enough to make a difference or the inflammation just builds up over time.

[Bramble2000 in reply to PMRpro]

Because last time I only took it for just under three weeks.

[PMRpro Ambassador in reply to Bramble2000]

Fair enough - but if 5mg makes no difference in 3 or 4 weeks - you can just stop it, It is barely enough to affect adrenal function going that way - coming down from higher is a bit different.

[piglette]

Your rheumatologist is wrong about people not getting off pred. They may find it difficult in some cases, but I would have thought the vast majority of people who have taken pred have got off it.

It is reckoned approximately up to 20 percent of people with PMR develop GCA, while about half of patients with GCA also have symptoms of PMR vasculitisfoundation.org/ed...

Based on this board I would say the majority of people finding they get adrenal symptoms are taking on average around 5mg of pred or even less. The adrenals only have to start working again at around 7mg.

[Bramble2000]

I’ve had Humira before for my AS. We aren’t trying to treat the PMR. I was eventually diagnosed with PMR at age 52 having had it for a few years. I was diagnosed by a PET/CT scan.