Oh my goodness!!!
Im surprised by your reactions. Thanks all of you for your help. Now Im all thrown out again. Id just decided to call it a day and accept this is as good its going to get.
The slight blood thinning affects and the cholesterol lowering would seem a benefit yes.
I dont have APS but I have had a DVT and also high cholesterol. Also a raised or positive di dimer which Im not sure what that means. Always raised ESR of course.
His words were...' I find it difficult to see a case for disease modifying therapy or indeed re -introduction of steroids. Hence the emphasis on exercise to improve stamina. One could consider introduction of agents such as Methotrexate or azathioprine or cyclosporin but I am not certain of how that is likely to help her overall condition.
He also said... 'there is no doubt in my mind she has low grade active lupus. There is equally no doubt in my mind that this is contributing to some of her symptoms. However as far as I can make out she is no worse off the steroids pretty much as she was when she was taking them and certainly I dont not think her blood tests incicate that we are overlooking severely active inflammatory disease or indeed organ threatening diesease. '
Hes not done any blood tests himself at the last 2 visits. (Which were about 8 months apart) Just the first one when I got diagnosed 6 months before that although I have had a few blood tests done at the doctors when Ive been about symptoms here and there.
Not sure where to go from here but I will be making an appointment with my GP (when she gets back from her holiday) I will discuss this with her and see what she thinks.
I am unsure of how bad I am myself. You know how you get used to not feeling on par and then after a long time it gets to be the norm.
I run my own business from home so do manage to arrange my time a bit around how I am feeling. I can have a sleep in the afternoon if I need it and I can sit down between jobs etc.
If I worked for someone else in the workplace I dont know how I would be able to cope then.
I dont have a partner either and I often think. How would I cope if I did have one. With this fatigue, joint pain and lack of stamina how would I manage to sustain a relationship.
With what youve all said about Plaquinel I would have thought it would have been worth a try to see if I felt better. And also it would be a good time now to start it while Im not in a massive flare I would have thought. I have had massive flares in the past so will he just wait till that happens again and then slap me back on the Pred as it will be the only thing that will work instantly.
I thought maybe its because its a very strong body altering drug with lots of side effects and hed rather not put me through that if Im sort of ok. But you all seem to think its a fairly harmless drug with minimal side effects.
Im just thinking aloud really so thanks for reading.
It never ceases to amaze me how unforthcoming an appointment with a specialist is and how enlightening it is on here.
Hes not a Lupus specialist though. Most of you are. Well at least you understand where Im coming from.
Thanks again.
Luv Sal x
Im surprised by your reactions. Thanks all of you for your help. Now Im all thrown out again. Id just decided to call it a day and accept this is as good its going to get.
The slight blood thinning affects and the cholesterol lowering would seem a benefit yes.
I dont have APS but I have had a DVT and also high cholesterol. Also a raised or positive di dimer which Im not sure what that means. Always raised ESR of course.
His words were...' I find it difficult to see a case for disease modifying therapy or indeed re -introduction of steroids. Hence the emphasis on exercise to improve stamina. One could consider introduction of agents such as Methotrexate or azathioprine or cyclosporin but I am not certain of how that is likely to help her overall condition.
He also said... 'there is no doubt in my mind she has low grade active lupus. There is equally no doubt in my mind that this is contributing to some of her symptoms. However as far as I can make out she is no worse off the steroids pretty much as she was when she was taking them and certainly I dont not think her blood tests incicate that we are overlooking severely active inflammatory disease or indeed organ threatening diesease. '
Hes not done any blood tests himself at the last 2 visits. (Which were about 8 months apart) Just the first one when I got diagnosed 6 months before that although I have had a few blood tests done at the doctors when Ive been about symptoms here and there.
Not sure where to go from here but I will be making an appointment with my GP (when she gets back from her holiday) I will discuss this with her and see what she thinks.
I am unsure of how bad I am myself. You know how you get used to not feeling on par and then after a long time it gets to be the norm.
I run my own business from home so do manage to arrange my time a bit around how I am feeling. I can have a sleep in the afternoon if I need it and I can sit down between jobs etc.
If I worked for someone else in the workplace I dont know how I would be able to cope then.
I dont have a partner either and I often think. How would I cope if I did have one. With this fatigue, joint pain and lack of stamina how would I manage to sustain a relationship.
With what youve all said about Plaquinel I would have thought it would have been worth a try to see if I felt better. And also it would be a good time now to start it while Im not in a massive flare I would have thought. I have had massive flares in the past so will he just wait till that happens again and then slap me back on the Pred as it will be the only thing that will work instantly.
I thought maybe its because its a very strong body altering drug with lots of side effects and hed rather not put me through that if Im sort of ok. But you all seem to think its a fairly harmless drug with minimal side effects.
Im just thinking aloud really so thanks for reading.
It never ceases to amaze me how unforthcoming an appointment with a specialist is and how enlightening it is on here.
Hes not a Lupus specialist though. Most of you are. Well at least you understand where Im coming from.
Thanks again.
Luv Sal x
