I had my first flare on 28/07/17. I thought I'd done very well having missed flares up to now having coped with stresses during the last 3.5 years, fractured spine bone, development of osteoporosis, my darling Janet dying, losing 2.5stones in weight and by dropping .5 mg per month I thought I might get down to zero as my Rheumatolgist wants. But no, CRP leapt up to 17 on Friday 28th, fearful headache for two days and then felt thoroughly grim with neck ache and muzzy head all the time. I wanted to go up to 10mgs but Rheumy said no try 5mgs first. He even rang me up. He seems to have the idea that if I went up to 10 I might never get off the steroids. Another problem now I've got bad varicose veins in my right leg and a blocked vein in my left, again compliments of Klinefelters Syndrome. The Dermatologist told me that Nature designed the blood vessels for ordinary chaps but not for men with KS so all my veins are continually under stress and valves fail. Ho hum! Wouldn't life be boring without something to worry about.
Regards to all, at least the sun is shining in Suffolk. Picture is neighbours cat a favourite.
Colin
Written by
GCA1947
To view profiles and participate in discussions please or .
Think life as a cat must be great! They always seem to be in control - unlike us mere humans.
Sorry to hear about your flare, not what you need on top of everything else. Lost my hubby throughout my GCA journey, certainly doesn't make it any easier does it?
Hopefully your Rheumy's advice will solve the problem, he sounds very sensible, but if it doesn't then you do have the option of upping your Pred at bit more. Such a shame after getting down to 3.5mg.
Unfortunately he's the one who said it wouldn't matter if my CRP got up into the 30's. He cured my tennis elbow in 2003 and we had a bit of a contretemps then because he would persist in calling me Mr Elves. He has been better this time and I like him more. If things got worse I could push up to 7.5 but I will wait because it's only been 5 days on 5 mgs.
This particular cat belonged to a neighbour and would join Janet and me at night whilst we sat on the terrace waiting for the hedgehogs to come and play on the grass. Polly invariably sat on my lap watching the little spikey creatures doing their thing in the middle of the lawn. The headache isn't too bad but the neck ache is grim and so is the jaw, on both sides now.
I'm sorry you lost your husband during your journey, its absolutely the last thing needed when one is feeling really ill.
I kept quiet about my reductions because I seemedto be doing much better than many others in the forum it might have been the testosterone replacement therapy helping.
You have had a rough time of it! Sorry to hear about the loss of your wife. Upping the prednisone seems reasonable until you can feel more "stable" stress-wise. There are times when prednisone is your friend...Best..
What a shame Colin. I do hope you rheumy isn't being too optimistic but hope springs eternal.
Cats never seem to get bored - I may come back as one...
Italiacs on and off is the same as in Word - Control i to switch on, control i again to switch off. Or you can block the text you want to change and do control i and it changes from what you typed to the other.
Though Janet was very ill for most of her life we muddled along as best we could and stayed in lovely Suffolk for all our holidays and excursions. Oesophageal varicies in 2000 and then 2 mesenteric thrombosies in 2008 meant that I took over all the household duties in 2000 and became her carer as well. It brought us closer together and we did manage some laughs at times. She was an absolute brick when I developed GCA coming with me to the Doctors for Prednisolone, to the hospital when I had my biopsy, bandaging the wound in my temple after the stitches were taken out. I sat beside her holding her hand in the hospice as she slipped away and I miss her terribly. So, I understand your loss and do feel for you. If I had a pound for all those who said you'll get over it in time I'd be a rich man, but I haven't got over it. Just thinking about her brings tears to my eyes and I can see her lying in our bed and do so wish she was still here.
My hubby always used to say that "bereavement was like an open wound - at first it hurts like hell and you never think the pain is going to stop, but you find over time it does reduce, but you're always left with the scar to remind you of what went before".
Oh dear Colin, how disappointing for you after weathering all those storms and going through a huge bereavement too. 3.5 mgs seems so far off to me, you must have done it so patiently and carefully. I do hope your symptoms settle. I think all you can do now is take a leaf out of your favourite cat's book and live completely selfishly and in the moment. Hopefully there will be more sunny days to bask in. Best wishes Jane
if YOU could just laze in the sun like the cat it would likely do you the world of good. You have had some really tough things to deal with so hope some better stuff is coming your way soon and the upping of Pred is just a late 'blip' in the scheme of things.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.