Well that was the week that was..Everything seems to be going ok, Im still on 40mg pred. seen the consultant today a PROF L S TEH who did not install any confidence in me at all, I have seen her once on a initial consultation when I was in the hospital for about 15 mins maximum, no diagnosis and very little communication skills. The result of the meeting was that the PRED needs to be weened off with the help of Methotrexate, I need a consultation with a nurse who I am told will advise me on the pros and cons so that I can move forward reducing the PRED.
To be fair Im not overly concerned with the change, or what changers are to be done, as long as I can take small steps forward. These last two weeks have gone really well , very little soreness in the muscles and joints, Ive been doing 1-2km walks each day without much of a problem, so Im feeling pretty confident, I suppose the crunch time will come when the PREDs get reduced, I`ll cross that bridge when it arrives.
Now I think I finished the last post off lying in a corridor at Blackburn Royal in Lancashire waiting for a bed to become vacant. Eventually a bed duly arrived in the Ambulatory Emergency Care Unit ,to be assessed on the next stage of this journey. I was there two nights, each night I had what I thought was bad heart burn, sweating at night( and we are talking wet through ), while I was in A@E they gave me PRED, not sure how much but enough to make me feel ok, not great but ok. It was then they decided to move me to C1-C3 ward,I was there for 9 nights being treated for heartburn, and was given Gaviscon for the said 9 nights, probably the worst 9 nights of my life, the problem wasn't`t heartburn ,I was having angina attacks ,and during them 9 nights, and after numerous visits by different consultants not one of them recognised the symptoms for a angina attack, you see Gaviscon does not cut the mustard. On the 10th day they decided to start treatment and I was given 40mg PRED, previous to that day I was unable to walk or do very little else, lost a lot of weight. So coping with the so called heartburn ( ANGINA) and the, of yet, still to be diagnosed PMRGCA ( this was confirmed some three weeks later). The following day I could actually sit up and kinda wobble about.
That day they discharged me, no discharge paperwork , no out-patient appointment, had to get my good lady to ferry me out of the Hospital to the car to go home. Arrived home on a Friday night, the joys of my own bed, woke up Saturday morning quite early, felt a pain in the chest and had a heart attack was blue lighted back into A@E,absolute nightmare. to be continued.
So these last two weeks have been pretty promising my appetite has returned, I still get tired pretty quick, the sweating has gone , but jeez with all these drugs, excuse the ?? but the toilet is a nightmare and nowt much is working ( its far worse than man flu ). Stay safe people until next time.
Don't know what's happening to me........
Petscan results
anyone under 50 with GCA
Is it the reason for fatigue?
