Can quitting prednisone too soon lead to GCA?

[Mcdurmott]

A close relative was diagnosed with PMR four months ago, had a temporal artery biopsy that was negative, and started on 15 mg of prednisone. She reduced it by 5 mg every month as ordered by her doctor, had one relapse, and is currently down to 2.5 mg and experiencing a lot of pain. She’s determined to get off prednisone no matter how much discomfort she’s experiencing because her face and neck are very bloated and a major concern to her. She’s also a heavy drinker, which I assume could exacerbate the bloating and wonder about that. My question: even though she’s still taking a minimum amount of prednisone, could this situation lead to GCA? Thank you so much for your responses!

[PMRpro Ambassador]

It won't LEAD to GCA but GCA COULD develop. But she will end up back in the state she was in to start with - I would say she has been totally mismanaged, you don't reduce 5mg per month. You description doesn't sound like "one relapse", it sounds like she is at too low a dose and the PMR symptoms are on their way back because the underlying autoimmune cause of the PMR is still active.

Cutting carbs is the way to go to reduce the facial bloating - especially processed carbs (which also cuts salt which is also a contributor to bloating) and added sugar. And of course, lots of sugar in alcohol except spirits but that has lots of calories.

It is up to her - she has to be convinced.

[Mcdurmott in reply to PMRpro]

PMRPro, when I heard that she was reducing by 5 mg per month—and very abruptly—I thought she was being mismanaged, too, As you’ve often said, it’s amazing how many doctors, even rheumatologists, don’t understand this disease. Thanks for your feedback, now and always. 🌺

[DorsetLady PMRGCAuk volunteer]

Did she have any symptoms at beginning to indicate she may have GCA? ….If so, what? Guessing maybe if she had aTAB…although as we know just because it came back as negative, it’s isn’t also so.

Just because the sample taken didn’t show GCA cells doesn’t mean there aren’t some in other parts of that artery or elsewhere.

No wonder she has relapsed if she’s been reducing by 5mg a month…where do some of these doctors get their information from?

PMR doesn’t always lead to GCA, but if that was in the equation early days, I would say it COULD be cause for concern, but would have expected other typically GCA symptoms to surface by now.

[Mcdurmott in reply to DorsetLady]

As far as I know, there was no indication of GCA, but your comment about temporal artery biopsies is well taken. She’s so swollen that she looks like a different person. She’s also having trouble sleeping. And on top of this, she’s experiencing severe pain. What a terrible disease! Thanks for your response, DorsetLady.

[DorsetLady PMRGCAuk volunteer in reply to Mcdurmott]

Pred does cause fat to be distributed around face and neck, but if she radically cuts carbs that might help. Sleeplessness is also a side effect of Pred, and I would say the pain she is in is because her dose of Pred is too low.

Agree it is an unpleasant illness, but the correct dose of Pred makes it manageable -and there are a lot worse..,

[Mcdurmott in reply to DorsetLady]

Thank you for the perspective , DorsetLady. I will share that with her.

[DorsetLady PMRGCAuk volunteer in reply to Mcdurmott]

Please try, but when you are in the midst of it it not always easy to see a way out... I can look back and be rationale about things, not sure I was when in the heat of things...

[Grammy80]

You've had responses from two of the best. There are just a few things that jumped off the page when I read your post.

She has been on pred for a fairly short time to attribute her being "very bloated" to the pred, four months and not that much of a dose. Secondly, as the others have said, dropping by five mg is asking way too much of the body.

There are far worse things that being on pred and I hope she sees another doctor, preferably a rheumatologist. I certainly wish her well.💕

[Mcdurmott in reply to Grammy80]

Thank you, Grammy. I had wondered if the severe bloating was due to her consumption of alcohol combined with prednisone. I haven’t been able to find anything that addresses that issue, but I’ve only done a quick search. She’s so bad that she can’t get necklaces around her neck that she’s worn all her life.

[piglette in reply to Mcdurmott]

I am sure the alcohol is playing its part in her problems.

[DorsetLady PMRGCAuk volunteer in reply to Mcdurmott]

Early days on GCA doses there were a few necklaces were too tight for me -but if soon returned to normal.

Would agree with piglette that alcohol is not helping…

[PMRpro Ambassador in reply to Mcdurmott]

They have checked thyroid function I assume? That can cause symptoms similar to PMR and with hypothyroid she may develop a goitre.

[Mcdurmott in reply to PMRpro]

Thanks for the question about thyroid function testing. That’s a good point. I will ask her (gently, of course). 😊

[Grammy80]

I know everyone is different but I've been on pred for three years and not experienced that. Now general weight gain is another thing. You may surely be on to something by considering the intake of alcohol. Has she had a complete physical in the recent past? There may be other health issues going on. It doesn't sound like getting off pred is going to cure the bloating, so why stay in pain?💕

[Mcdurmott in reply to Grammy80]

Yes, Grammy, you’re right about the bloating not being cured by pred— so why stay in pain? The other issue—heavy drinking for years—is the best kept secret between patients and doctors. This may be playing into her problem., But of course, that conversation is also off limits for families and friends. Lots to think about,

[Grammy80]

It is not an unfamiliar subject in my family history. Sooner or later, the choice has to be made. Life or liquor, blunt but true. Sometimes patients think it is a secret with the doctor but often he/she knows from the symptoms. Doctors are also VERY familiar with the issue and don't judge. They really don't; almost anyone has dealt with the issue in their own family. 💕

[Mcdurmott]

Thanks again for your compassionate responses💕