Hi all
I have received a letter from my NHS consultant. I see her at the end of the month.
The letter tells me most of my blood results taken 3 months ago are normal, showing no evidence of lupus.
It says there are low levels of antiphospholipids, but that these are 'probably normal'.
I am not sure what this means. Does it look like I have been mis-diagnosed?
I know I have tried to broach this before, but reading back through medical letters, etc. I see no previous positive blood test for lupus. It was diagnosed at the same time as Hughes and Sjogrens, and think I was really diagnosed with mild lupus on symptoms.
It would be wonderful to have a diagnosis removed.
I am very well, and less tired these days.
If the consultant does not think I have lupus at all I think this would be reasonable, since there is such an overlap with the other conditions.
However, I am a little concerned that I might be feeling so well because I have been taking Plaquenil, so I do not really want to be taken off it. It has taken a long time to work and the side-effects are long gone. I do not want to go backwards because I feel I am getting my life back together with less resting and little pain.
If she does not think it is lupus, am I likely to be taken off the Plaquenil, or might I still take it to help with the other things?
If she thinks slightly elevated antiphospholipids are 'normal for me', is it even more likely that I will be taken off them, or does Plaquenil not help with Hughes anyway?
My drugs regime is down to Plaquenil 400mg, Aspirin, betablocker. I do not require ANY anti-inflammatories / analgesia and have not for several weeks, but I have a small supply and a repeat prescription, so I feel secure on that count.
Up to and before Christmas I was eating them 4-6 hourly, and still uncomfortable, but they did help. When I took them properly and regularly.
What ever she says I am going to try really hard to convince her to allow me to continue to take Plaquenil for a little longer at least.
I guess I'm looking for ideas on what to expect.
I don't want or like the diagnosis, but I do not want to go back to constant pain and dragging tiredness, etc. either.
Good grief, I do hope this makes some sort of sense.
I have received a letter from my NHS consultant. I see her at the end of the month.
The letter tells me most of my blood results taken 3 months ago are normal, showing no evidence of lupus.
It says there are low levels of antiphospholipids, but that these are 'probably normal'.
I am not sure what this means. Does it look like I have been mis-diagnosed?
I know I have tried to broach this before, but reading back through medical letters, etc. I see no previous positive blood test for lupus. It was diagnosed at the same time as Hughes and Sjogrens, and think I was really diagnosed with mild lupus on symptoms.
It would be wonderful to have a diagnosis removed.
I am very well, and less tired these days.
If the consultant does not think I have lupus at all I think this would be reasonable, since there is such an overlap with the other conditions.
However, I am a little concerned that I might be feeling so well because I have been taking Plaquenil, so I do not really want to be taken off it. It has taken a long time to work and the side-effects are long gone. I do not want to go backwards because I feel I am getting my life back together with less resting and little pain.
If she does not think it is lupus, am I likely to be taken off the Plaquenil, or might I still take it to help with the other things?
If she thinks slightly elevated antiphospholipids are 'normal for me', is it even more likely that I will be taken off them, or does Plaquenil not help with Hughes anyway?
My drugs regime is down to Plaquenil 400mg, Aspirin, betablocker. I do not require ANY anti-inflammatories / analgesia and have not for several weeks, but I have a small supply and a repeat prescription, so I feel secure on that count.
Up to and before Christmas I was eating them 4-6 hourly, and still uncomfortable, but they did help. When I took them properly and regularly.
What ever she says I am going to try really hard to convince her to allow me to continue to take Plaquenil for a little longer at least.
I guess I'm looking for ideas on what to expect.
I don't want or like the diagnosis, but I do not want to go back to constant pain and dragging tiredness, etc. either.
Good grief, I do hope this makes some sort of sense.