Especially PMRpro; Merk & Lyndyloo2
Fellow Sufferers--It is good to be able to share experiences on our journey through PMR/GCA and learn from others who have trod the path before us. If only these were collated for the purpose of research into this debilitating illness or further training for rheumatologists/specialists to enable them to see beyond guidelines/ typical sufferers into the world we inhabit of atypical/ sometimes downright unique presentation of symptoms.
"Polymyalgic syndrome" ( thanks PMRpro) seems much more wide-ranging than the guidlines would suggest. Some people present with shoulders/arms problems; some with hips/legs problems; some are unfortunate to be afflicted by both and yet more have the complication of GCA to contend with. Some are affected by 'Classic' morning stiffness that tapers off during the day; some have pains throughout the day; yet more have 'good days' and 'bad days'. Some have PMR and are not affected by GCA but others are-- necessitating higher levels of treatment. Many also have pre-existing conditions which can exacerbate PMR or be exacerbated by it.
My personal experience is that pred treats PMR but causes a drastic increase in blood sugar levels meaning a move to insulin to treat my T2 diabetes and also causes water retention which aggravates my leg lymphoedema resulting in an increase to level 2 compression hosiery to contain the additional swelling. It has also caused muscle weakness which has made moving my "lymph" legs very difficult.
Prednisolone:-- currently the main treatment for PMR/GCA but bringing with it a whole host of side-effects (most of which I seem to have unfortunately experienced). I am not decrying 'pred' for without it I would undoubtedly have had eyesight problems but without this forum there is little or no informed support available in advance; moreso if, like me, you insist on working shifts as normal (meaning appoinments coinciding with both my schedule and the GP/rheumy).
Rheumatologists:- tasks seem to be to reduce the level of pred as quickly as possible (sometimes within guidelines) to see if the body has any PMR flares at which point the specialist takes a little more interest. If only our input as collected experiences could have an influence on the specialists insight into the disease.
I've gone on long enough now so i'll close with a question-- Iritis (Uveitis); GCA and leg lymphoedema have all affected my left side. As they are all auto-immune conditions is there a connection?