Hello I have just joined....I have just been diagnosed with PMR in August 2020. Managed to go back to work and reduce steroids down to 14mgNow on prednislone treatment for GCA. I had been having unusual headaches intermittment for 5 weeks x2 off sick from work. aching in jaw and very bad sweats. explained away all symptoms to myself as a previous migraine sufferer and only just post menopausaul women of 54, pmr ME Hypothroidism etc etc . then very poorly in bed for 5 days, dramatic loss of apetite, sweats headache and fatigue. felt too poorly to even get help, live on my own. so contacted my children to tell them and ring in to make sure i was back from feeding the animals. Weather was cold below freezing, i had to feed my goats/chickens and horse. It was a chore and i feared losing sight or worse a stroke and not being able to contact help in time. i live very rurally. previously very active. i began to seriously suspect GC but still felt a bit of a drama queen. when i began to feel a bit better i contacted gp asking if it could be GCA, he did take it seriously, did examination within the hour and blood test. he still gave strong migraine tabs in case say ing that should sort it! despite me 100% knowing it just wasnt that. but by this time the pain and swelling had subsided somewhat. A phonecall first thing next morining from GP to increase steroids to 50 as Inflammatory markers were up..... i feel lucky, thank fully gp responded quickly it could have been bad. I should have trusted my instincts sooner!! but couldnt have biopsy to 100 % confirm due to covid. Even had to have a covid test as haemoltologist said that in a very small percentage of covid patients they experience obscure symptoms similar to GCA. covid test came back negative. After initial dramatic improvement in headaches, sensitivity, vision tried to go back to work, after a week off hol which i spent in bed and a week off sick. set myself back this week with extreme fatigue, intermittment swelling in temples blurred vision, some milder headches. I have had ME for 24 years but since 2017 have been good with lifestyle managment but this feels it has sent me right back to those days. i reluctantly have gone back off sick got sick note for 2 weeks but it causes me anxiety at not being able to manage to go back after that and letting people down. i always feel imposter syndrome trying to 'pull myself together' which I do know does not help. Reading some of the posts on here I realise I was extremely niave to expect full or better recovery so soon. Despite my gp prompt response I feel he doesnt know much about the condition. he felt if it was GCA my symptoms would have been constant and incremental until it was inevitable sight loss etc but I know that isnt the case from research especially as I was already on prednisilone. i received no info it has all been from the internet. so thank you guys. Thankfully he is giving the sicknote with no aggravation. Covid has had dramatic implications for info and followups etc Any advice on anything welcomed to cope and allow recovery.
Covid and recent diagnosis/treatment of GCA - PMRGCAuk
Covid and recent diagnosis/treatment of GCA
Hi and welcome,
I’m going to give you a link to a post I wrote about PMR and GCA - they are not the same, but the treatments are similar - it’s just the initial dose of Pred that varies.
healthunlocked.com/pmrgcauk...
As for working, it can be very challenging especially early days when flares in GCA are very likely if illness not properly controlled. You do need to talk to line manager and HR, and union rep if you are in one....you will need help to get back to work.
Your GP is partly correct, untreated GCA usually gets incrementally worse, but doesn’t always lead to sight loss - but you shouldn’t be too blasé about sight loss just because you are on Pred, you need to be in the CORRECT dose, too low and it can still happen.
Thank you Dorset lady. I am on 50 mg and was considering perhaps reevaluating the dosage with the gp. I am off work for another week but I am prepared now to be practical and more realisitic with my capabilities. I work in a bakery in a supermarket. long day up at 4.30 and work alone. I have just reduced the shifts from 5 to 2 a week to undertake a masters of art . It has been crap timing. I went back sat to the bakery after 2 weeks off. it seriously has set me back, energy wise and fatigue. I was due another shift yesterday and know that just wouldnt have been possible. I still experience night sweats and milder headaches and do get mild swelling on side of temples not necessarily tender. vision can be blurred, i notice it on text on the tv which i didnt have before. i wondered if that could be the effect of the high does of pred, as opposed to GCA or both. I have also booked a opticians appt for mon to check my sight.
Vision issues could well be high dose of Pred... but good to get sight checked. Sorry but a long day on shift is really not realistic at the moment - especially if you’re trying to study as well.
Please discuss with GP and let’s us know how you get on.
yes thank you for the support, Dorset lady. This has come as a big wake up call. I was very under prepared. i will do. thank you
I think a lot of us were in the boat - it took me 18 months to get a diagnosis - never heard of PMR nor GCA before - it certainly was a shock for me - especially losing sight.
Plus it does take some time to get your head around the whole scenario - we’ve all heard of cancer, strokes and heart attacks and probably know someone who affected, so perhaps have some idea of what that means - but I doubt many know others with GCA or PMR.
I think you probably have to get past the imposter syndrome bit - you have a serious systemic autoimmune disease and are on a high dose of pred which itself is a good enough reason to be off sick. Depending on what you do, there is also the factor of the effect high dose pred can have on judgement and mood - can you work safely and effectively?
Could you add a bit more to your profile please - like where you are! It makes a difference for our suggestions even in different countries in the UK, never mind being in the USA or Australia!!
It WILL get better - but not in a hurry I fear. For the moment, sit down and relax.
Thank you. I have tried to update the profile. I am in Carmarthenshire, West Wales UK. I am relieved that i am not imagining this but obvious devastated to find myself in another chronic illness. Hardly surprising, i am not new to stress or chronic illness. I was diagnosed with ME in 1999. 2019 I lost my father very suddenly within 5 months of a diagnosis of pancreatic cancer and a stroke and at the same time my teenage son ended up having a psyhchosis and being diagnosised with severe bipolar. he was taking, drugs the preceding year but couldnt prove it until he had this. he was trying to self regulate his mania and depression. I nearly lost him too. I couldnt tell one about the other. I had to choose to be with my son locally or father in London. Once my son was better and released with support, but had been sectioned 3 times put in a secure unit and watched him detox and suffer. I then travelled to London every week to be with my father. till my father finally died on 6th sept 2019. I sat with him day and night watching him die for 4 days. I lost my business because i needed to be with them. had to then move 3 houses (airbnb) and studio into one flat and get a job. I had 2 jobs. then settled on working in a supermarket to keep a roof over my head. my youngest of 4 children also flew the nest that year in the middle of it all. I felt i was getting my life back even with covid and could begin to resume my business as a textile designer, by continuing my MA. All this has come as I start that. I seriously need to stop working at the supermarket but financially just couldnt afford to give up work despite desparately wanting too. looks like I may have no choice. Financially I just dont know what to do though
Indigo, What a story!! You are such a brave woman to take such good care of everyone around you in such hard circumstances. Now it’s time to take care of yourself. 💕
UPdate:
Thank you to all your wise advice and support.
I contacted GP today. He has increased Pred by 10 mgs initially and is prepared to increase it until symptoms are completely under control. He has also offered full support with not returning to work. Taking it one day at a time providing sicknotes when if needed. I also have the opticians booked for monday to check my eyes. I have spoken to work and prepared them for longterm time off.
I AM slowly getting my head around the whole thing. Thank you.
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