Introduction

[196_]

Hi,

I was diagnosed with GCR in August, currently taking 40mg of steroids Daily. Trying to cope with work and my role as a carer. Will be great to hear from others as I feel as if I have been in limbo

[DorsetLady PMRGCAuk volunteer]

Hi and welcome, As you are working and caring for someone then you will find life difficult.....those who are still working will be along shortly - but you do need to get your employers on side - their understanding and appreciation of your illness with be vital.

In the meantime have a look at this - might explain things a bit better for you -

healthunlocked.com/pmrgcauk...

[196_ in reply to DorsetLady]

Thank you very much. I will be grateful for any advice given. It's great that there is a community

[DorsetLady PMRGCAuk volunteer in reply to 196_]

Yes it is - it helped me immensely early days with my GCA - been in remission now for over 4 years.

[Frewen1 in reply to DorsetLady]

Dear DL, so pleased I came across your response to 196 .... what a brilliant résumé, and so helpful to me, 5 months into GCA ( and hello, 196...) really illuminating, and I shall pass it round to friends and family. Have a good week. x

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

🌸

[Kendrew]

Hi 196. I was diagnosed may 2019 with PMR and although had tapered down to 2.5mg of pred 18mths later, work has brought me right back up to over 15mg again. I work in a primary school with nursery age children and it's full on as you can imagine. Unfortunately, I've had almost 18mths of the past two years not able to work......Some because of lockdown, some to 'stay safe' because of immunosuppression and much because I was simply too fatigued from the condition, and the extra physical activity repeatedly causing exhaustion or flares. My 'new' life with PMR does not allow me to behave as previously.......My regular daily gym workouts have now become wholly inappropriate for my body's much lower physicsl capability. Managing stress and anxiety effectively has become more significant in order to prevent escalation of symptoms, and acceptance of a new 'norm' in terms of what's realistically achievable has been a constant battle. However, once I had realised and addressed these issues, my journey became much easier. (I continue to exercise....walking, light resistance work and gentle yoga now. I will go into work when it's safe and I'm able, and NOT fret about my unavoidable absences, and I've learnt how to adapt my life in a way....... that for the time being at least..... supports me through my condition.) I've been very fortunate to have the full support of my headteacher and SLT which has been instrumental in helping me navigate my way through all this.....It's really hard to both work and manage the condition together, as any excessive physical activity or stress will most definitely aggravate symptoms.....and that's guaranteed! I'm being continually supported, advised and educated....as you will be..... by the wonderfully knowledgeable community here, and this sustains me in those scary moments of uncertainty and fear. There IS life after a PMRGCA diagnosis......you just have to make a few 'tweaks', and although there'll definitely be challenges along the way, you'll always be able to access reliable and informed advice here and the support you'll need to help you make decisions that are right for you.

[Kafkaontheshore]

Hi 196_,I was diagnosed with GCA last September and with PMR mid 2017. I have been off work since then and have a phased return starting next week. As Kendrew said the fatigue can really get you, it does me anyway. Have to plan, pace and prioritise what I do. I’m still getting to grips with GCA and it’s impact but making slow progress. Work and a caring role will be challenging. Do ask questions etc on here, the forum has loads of expertise to offer. All the very best 😄