Good morning all, I am currently on 22 1/2mg for GCA, having tapered from 30mg at the beginning of Dec, I am doing ok now I have accepted the condition and being on the steroids, this week have had a bit of a dip, can see a few changes to my face, eyes very puffy, very very dark under the eyes,and I just feel I look different, bit more achey but have been like that for years, it’s just got me down a bit and I know I am just at the beginning of all of this, my question is and hope to not sound vain but purely to give myself a boost is it ok to have facials, dermabrasion, back massages, accupuncture etc, I paid privately for my rheumatologist and she’s so far very good, but not had a lot of support re steroids, what’s ok and what’s not, I’ve had the best info from this group and read all the posts every day
Im really trying to not let this all get to me and to try and keep on top of it, I’ve managed to loose 12lb in weight since Christmas, I think im just trying to stay in control of this and not let it control me, I know this is ok when you’re feeling well but when poorly that’s not the case, I hope you don’t think this is vanity, it’s more about trying to feel better in myself
Many thanks
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Mumdadlove
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Certainly not vanity, Mumdadlove. I found hot stone massage very beneficial - gentle and totally relaxing while others prefer a more ‘heavy handed’ approach. The therapist should ask you questions about your health pre-treatment and should know about PMR/inflammatory diseases in order to choose the best oils for you; the same would apply to facials. A holistic therapist may be preferable for the massage and a bit of research should point you in the right direction. Go for it but a reminder to ask the practitioner to stop if you feel any discomfort.
I think we all get upset about the face and facial hair bit and at a time when everything seems to have gone off the rails it feels like it’s one thing we can control as well as the last straw. Some of us look in the mirror, sigh and then get on with the day making a mental note to cover up the mirrors, grow our hair and buy a hat. Some of us find it really upsetting and more of a distraction.
Well done on the weight because that is important for your whole body and reducing the potential diabetic effect. Make sure you’re not restricting food such that you miss out on nutrients you really need while on Pred. Restricting carbs is best so as not to induce glucose highs, but we are all different. On the puffiness, I had to restrict salt severely or my face got very puffy particularly the eyes. The shape is just the relocation of fat and will reduce as the dose goes down. Dieting can help but it won’t eradicate it. You may find it appears on the back of the neck too and round the middle of your abdomen. If you lose weight it’ll stay there and the rest of you will shrink around it. Just keep remembering it’s not permanent.
As for the rest, I think it’s down to what you can tolerate. Some people love a massage and indeed find targeted massage is good for spots of inflammation in myofacial pain. Others like me went from loving them to finding that they caused more problems, once on Pred. Try it but perhaps go in gently to see where you are at and of course it might change with time. I’m off Pred and more or less back to normal massages but sports massages are a bit too much now. I stuck to reflexology and Bowen therapy.
Facials are a nice middle ground I think but personally I’d be wary of dermabrasion, scrubs or anything that might upset the skin that does tend to become thinner and more prone to damage while on Pred.
Thank you so much, this group is such a blessing, I feel it’s such a strange situation, you say to people your on steroids, they’ve not heard of the condition and it’s a bit dismissed, but there is so much that comes with it all, and that’s what’s so hard to deal with, my mum had PMR and GCA, I remember the puffiness, her change in behaviour etc etc but didn’t understand it, no Internet or amazing groups like this, so I am truly grateful to have you all, thank you, I hope everyone see’s this reply as it really does mean a lot, I wrote my original post about 5am this morning when I couldn’t sleep, am feeling a lot better now after all the lovely replies xx
As others have said, you do need to be a bit a careful, you need to find a therapist who is aware of the effect that steroids can have in your muscles re the massage point of view. So give it a try, it may be for you, it may not.
As for facials etc, just remember that your skin will be a lot less resilient on Pred, so again be very careful who you see, and what they do.
But unless you try, you won’t know… but do make anyone fully aware that you are on steroids..
I have found reflexology very calming. I told the reflexologist about my condition which she then researched before the session and adapted the treatment accordingly, very gentle, focusing on circulation.
I wouldn't do dermabrasion as it removes the top surface of the skin and that is a risk factor for infection - something you may be more prone to while on pred.
Don't expect acupuncture to cure anything - one or two people have benefitted from it but most don't. Again there is a small infection risk as it is piercing the skin but it may be worth the try.
Facials are unlikely to do much about the puffiness or if they do it will be very temporary - it is due to fat deposition and fluid retention due to pred and however careful you are about carbs and salt, some will occur.
I'm a fan of massage, even therapeutic sports massage, and my physio does mobilisation of myofascial trigger points which can be pretty painful at the time but do have a very good effect longer term. Many people find it hard to cope with as it tends to release inflammatory substances from the trigger points and they feel as if they are flaring afterwards until those cytokines are out of their system. But you do need a competent therapist - who has some background of massage in medical situations.
I think that finding the thing that works for you is a good idea - I loved Bowen therapy when I lived in the UK but my therapists were down-to-earth northeast women, no flim-flam. Here it is all "wellness" orientated and costs a small fortune! I also now do aquafit here - did it daily in the UK but the option wasn't here so I gave up. That is good - especially since we get to use the outside saltwater waterjet pool too - when it isn't packed with tourists like last week!
But learning to love the new you is important - the inside is the same and the packaging will improve as the pred dose falls. I've been on pred for nearly 14 years and my skin had thinned and bruised easily. Since I have been able to get the pred dose much lower it is much improved. Many doctors say it doesn't but they are sometimes wrong.
Well done on the weight loss, thats brilliant. Can totally get hating the puffy eyes and face! Not looking like "me". Sounds vain but it's not at all!! Most of us here get it! I won't even get in photos, I just don't want to see it in glorious colour!! Ha! If something like massage helps you, go for it as others have said but be very careful who you go to. If you like it, it would be something for you to look forward to. I definitely wouldn't advise going near microdermabrasion while on steroids. It would be way too harsh. It wouldn't do anything for puffiness anyway. You could have other facials that would hydrate and brighten the skin and maybe a bit of lymphatic drainage to help puffiness. Unfortunately with the pred it's a part of its thing and it will come back, but every little helps! I love skincare, it's an interest of mine. Good luck, hope you find something that helps.
Hi there, Like the other replies, I do so sympathise with your feeling that on top of everything else to cope with one's face changes in a very unflattering way.... I had been using a retin A cream from a dermo but stopped that as my skin got so thin from the Pred, so definitely NO dermabrasion as others have said. My worst time was Christmas 2021 when my face and neck merged as one, my cheeks were so fat my eyes looked half shut and even the optician laughed trying to get glasses to fit properly and I couldn't do up the silver neck chains I'd always worn...BUT 12 months on and pred reduced down to 3 mg, + TCZ weekly, (improvement started around 10mg) face and neck have returned to normal, eyes clear and bright...so there is light at the end of the tunnel. Well done with weight loss I have stayed around the usual 60kg but loss of muscle tone is another depressing factor BUT, we're alive and we'll get over it and boy does this forum help! Bestest wishes and don't despair 🤗😊
Being on doses above 20mg is tough. But the good news starts a few mg below that when some of worst add-ons start to subside. And your weight loss is a fantastic achievement!
FWIW, I had acupuncture by a physio for a few weeks before the PMR diagnosis. The previous Autumn It had helped a lot after an accident, but this time it did nothing at all. Though to be fair, the physio had no idea he was dealing with PMR!
Thank you for replying, I’m hoping to cut down to 20mg this week, I hope all goes ok, I can already see such a difference in my face, puffy eyes, hamster cheeks, I love my massages and holistic treatments, I think I will leave the acupuncture and just gave the massages, wishing you all the best and thank you
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