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254 Posts
Hi all,
I went to see one of the great doctors at the lupus unit at St Thomas' yesterday. I had to reduce my mtx dose recently as my white cell count went way down, and so far my lupus has coped with it. I have also been reducing my steroid to safe levels.
Anyway, I asked her if I'd be on all my meds for good. She said that they wait for a year of reduced / no symptoms and then start taking people off all meds. She reckons Plaquenil should be kept on for life, but everything else can potentially go if the lupus calms down. All rheumies so far have told me that people have to stay on things for good!
I also asked about the latest thoughts on life expectancy for us with lupus. She says that more or less it is now the same as the rest of the general population. Regular monitoring of bloods mean they can catch things earlier now than they used to be able to, and the meds are so much better. The biggest issue is cholesterol related problems, but these should be more closely monitored as well if you have lupus.
So I came out very positive as she had reversed very negative pictures I had been given of lupus in the past. I always thought that the stats on life expectancy were way out of date in all the texts I read.
I'm just working towards a more stable life from the symptoms point of view to be able to kick the meds. Fingers crossed!
I went to see one of the great doctors at the lupus unit at St Thomas' yesterday. I had to reduce my mtx dose recently as my white cell count went way down, and so far my lupus has coped with it. I have also been reducing my steroid to safe levels.
Anyway, I asked her if I'd be on all my meds for good. She said that they wait for a year of reduced / no symptoms and then start taking people off all meds. She reckons Plaquenil should be kept on for life, but everything else can potentially go if the lupus calms down. All rheumies so far have told me that people have to stay on things for good!
I also asked about the latest thoughts on life expectancy for us with lupus. She says that more or less it is now the same as the rest of the general population. Regular monitoring of bloods mean they can catch things earlier now than they used to be able to, and the meds are so much better. The biggest issue is cholesterol related problems, but these should be more closely monitored as well if you have lupus.
So I came out very positive as she had reversed very negative pictures I had been given of lupus in the past. I always thought that the stats on life expectancy were way out of date in all the texts I read.
I'm just working towards a more stable life from the symptoms point of view to be able to kick the meds. Fingers crossed!