To start the confusion - to post to GCA/PMR or NRAS - guess cut and paste to both with such a cross over of syptoms, all auto immune anyway..
GCA diagnosed some 5/6 weeks ago - and commenced on 60mg pred, had reduecd to 50mg which is where it was until yesterday. CT last Monday - normal (thank goodness). Diyhdrocodeine, plus MTX 20mg (inject weekly) and all the other RA dugs, Sulpz, Mobic, Omperpezole and paracetamol. Had RA 12/13 years - and still only 52!! Work full-time, but otherwise happy and healthy (got to be positive eh).
Saw Rheumy Consultant yesterday - 40 mins in his company and now so confused. I must say at this point he has been my rheumy since diagnosis 12+years, and he is great, no complaints about him, or the service I get from my GP or hospital, and for this I feel very fortunate.
The GCA has still not resolved, hence having had the CT, - the issue now being I am having left sided numbness - face and back of head, but now also having reduced sensitivity in my left arm and to a degree my leg, having the odd stumble. Also raised pain in my knees at night, actually having to be assisted out of bed on 2/3 occasions, this has not happened for many years! There is still a query as to it being GCA, but they don't want to say it isn't..
Rheumy now referred for 2 different MRI scan's - brain and neck/head. He did all the reflex tests yesterday and def reduction in the left side, even with the sharp thing run up the sole of the foot - feel pretty worried... Not used the word stroke, or obviously there is not a huge concern that it might be that or I would not be at home - I guess..
He now wants to reduce steroids by 10mg per week from where I am at 50mg down to 10mg within next 3/4 weeks - he really wants me to ride out the side effects of doing this - only reduced yesterday and feeling it today - so tired, so sore, chest and back pain, ache every where, even my eye lids - feel total rubbish.. Face so fat and swollen, and tends to swell during the day
Anyone else had these experiences
Any thoughts would be greatly appreciated as to how to manage/deal with this.. I am so fed up today - want some energy, have got the in laws staying near by for a week and all coming for roast tomorrow, which I really want to do, just need inspiration, energy and drive!!
Thank you for reading my moans and groans...