I have GCA and after 18 months of prednisone and Actemra I have noticed my neck is really looking awful. I am looking for a Doctor for a neck lift or whatever they can do, but I wonder if I have another flare after June when I will complete my current course of prednisone would another round of prednisone take any benefits of the surgery away. Of course I would ask the Dr. this but maybe someone on this forum has better advice than a plastic surgeon.
Thanks.
To be honest I think I’d wait until Pred is at very low doses (and no sign of GCA) at the very least before contemplating any kind of lift, simply because on this journey the skin and fat deposits, collagen etc are under a constant state of change. I wonder, but I am no expert, that you have a procedure done only to find it doesn’t seem right when your face and neck change yet again. You are early days in your condition and the effects of having a serious systemic illness still need time to play out. I base that on the changes my body and skin went through over the 3.5 years my GCA allowed my Pred to stop.
Thank you SnazzyD - you are correct and as I'm only into my second year of GCA I'm only trying to gather information so see if it is possible. I'm having a Pet Scan in April but that won't ensure that another flare won't happen. Guess I'll need to be patient. I was off prednisone for 9 months last year then had a vision problem so back to the drugs. I will be finished my Pred June 1st. Hopefully I don't have another year and a half of this.
Are you being given a reduction plan that you are following to the letter come what may? Are you reducing with symptoms or are you completely comfortable all the way down? It strikes me that if you are 18 months from diagnosis and in that time have managed to be off Pred for 9 months at some point you plans have been mighty fast and pushing you into a flare. Or have I misinterpreted. You need to avoid yo-yo’ing as it risks an overall larger dose of Pred and a longer journey.
Maybe it was too fast? Following the Dr.'s plan. I'm now on 5 mg going down 1 mg every two weeks.
Even with Actemra. I personally think 1mg every 2 weeks is too quick…. Buy what do we patients/ex patients know 🤣😂
Thank you Dorset Lady. We have a shortage of rheumys here so I hate to put my Dr. off by questioning her plan - could try when she phones my PetScan results in April.
Ok… it might work for you…. Hope it does…
How long have you been on Actemra? The Actemra may allow you to reduce the pred in terms of the PMR/GCA but return of adrenal function is a totally different matter. That isn't likely to happen at that speed - from 5mg you need smaller steps and longer intervals.
I started Actemra (weekly) Oct 2024 at the same time of Pred of 60 mg.
Even if it is only barely 6 months, you started on very high doses of pred so there will have been adrenal suppression as a result of that so what SnazzyD has said really does apply. And Actemra ISN'T 100% successful for patients to get of pred entirely. Half of us continue to need pred for other causes of the inflammation. I really think you will need to slow down sooner or later.
Might be. The trouble with 1mg every 2 weeks is that it doesn’t give enough time to know if the previous dose was your lowest dose for now. I understand you want to stay onside with your doctor but if you find that you flare again, doing the exactly same a third time needs to be questioned. It isn’t a course that you take with the expectation that GCA has gone by the end if it is withdrawn quickly. Actemra deals with a very specific component of inflammation (IL-6) whereas Pred is broader spectrum. If your GCA involves more than just IL-6 then Pred is necessary. Time will out.
If you find you become exhausted, nauseated, generally achey and generally done in, that is usually your adrenal function not sharing your doctor’s optimism and not coming back on line at the same speed as you are withdrawing the Pred. Not all doctors remember this bit. So if you start to feel like this the only was to deal with it and be able to function on a daily basis is really slow down.
I will be finished my Pred June 1st
It’s never wise to put a date of when you will finish Pred… your GCA may have a lot to say about that…
As the old saying goes - there's many a slip 'twixt the cup and the lip.’
Just to add, Pred thins the skin so I wouldn’t be thinking about any procedures until off Pred or on a much lower dose. .
For sure. I would want to be completely of Pred but what I was hoping to get from the forum is has anyone done this, and what if I have to go back on Pred in a year - what then? Thank you for your adivce.
I’m not sure many have had this sort of procedure tbh…
My neck looks awful too. 😖 xxx
yes, me too!
I was just thinking the other day how much my neck has aged over the last couple of years. It is really noticeable and bothers me.
I have been looking at possible treatments to help the skin, but have come to the same conclusion, that it is probably best to wait until l am on much lower doses of Pred.
Whether this is positive for you or not, my skin improved over the year after I stopped Pred so what I had on low doses wasn’t the end of the road.
Been thinking - I would suspect/hope that a reputable plastics surgeon would be reluctant to work on someone on pred at any dose. And if one were offering to do it - I would want a second opinion from someone who ISN'T making money out of it.
Do like Nora Ephron did - wear 'turtle (polo) necks'.
Or always have a scarfe fashionably draped (useful on public transport for the coughers).
I’m 54 and two years into the PMR experience. Everyone who has seen me has told me I’m too young for this. “Thanks”, I feel but I have no idea what to do with that comment! I have a steroid hump and a neck that sounds like yours and my face is moon like. Why am I sharing this? Because I have no doubt whatsoever that you are way more beautiful than you think you are. Try to think of the beautiful things that you value in this world - your love and your relationships -and don’t get trapped by any of the ugly feelings you are having about yourself. I cringe when I see the family photos of me looking ruddy and huge and saggy but underneath it all I think I’m experiencing what real beauty is - not the mirror stuff. Take good care of yourself and don’t let a reflection define you - you are way more than that. Big hug xx
Pain in neck, shoulders and arms
new symptoms-jaw pain and stiff neck
update: tapering, nausea, steroid withdrawal, adrenal glands
Everything was going well, then bang, I ve got a cold. 
Continue Forever on Low Dose Prednisone?
