Hello all
Apolgies for laying dormant for so long, have had so much to deal with i went back into denial!
Since ive last been on here, ive had a bit of a nightmare trying to get this thing under control.
I started MTX and was on 60mg pred, which was all going fine, had another ct scan of my head, which showed a worrying amount of damage to my ears and sinuses, but i suppose this is to be as expected. I got some hearing aids tho after xmas and i can at least hear now, which is great :-)
As soon as my pred was reduced, 5mg a fortnight all symptoms just kept flaring up again, so we agreed to stay on 60mg of pred for 8 weeks, and as selfish as it sounds i am the size of a house!! i have put on 4 stone now since the begininng of this, i know there is more important things to worry about, but i am too embarrased to step out my front door now, i look awful!
2 weeks ago we started to reduce the pred again and yet another flare! so i have started ctx infusions last week :-( something that i was desperate to avoid.
I just cant understand why it wont behave itself and go to sleep, im terrified that it will never.
Im due to have 6 ctx infusions over the next 6 months, my question is what happens then, what happens if it flares again, the only thing that seems to control it is high dose steriods, which i just cannot stomach anymore, they make me seriously angry! and i find it so hard to concentrate, which is something i really need to do for my job.
I still dont have a wegs specialist, i started the referral process to addenbrookes, but have stuck with my rhumatologist, she has some experience with wegs but i am her priority, she also runs private and nhs so i can always see her straight away, she is very knowledgeable and asks lots of other doctors for opinions, i dont know whether this is good or bad but worry if i go to a bigger clinic, i would be a more of a number than an individual and would be waiting longer for help.
When do you think i will see an improvement with the ctx? ive heard it can take months before you notice an improvement?
Also how long am i looking realisticly for this moon face to disappear? i am looking a little too much like susan boyle for my liking!!
And during this time everyone assumes that your better, diagnosed, medicine, then you must be better. Help is dwindling rapidly just as i start to feel worse than ever, ive been suffering with this nearly 12 months now and it only just feels like im starting the process of being treated. I suppose this is the nature of the beast, im trying to relax and go with it, but sometimes its so darn frustrating!!
Thanks for listening, rant over :-) hope your all well
Bookmarks