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Lupus - to be or not to be????

Hi Guys

I was diagnosed with SLE about 4 years ago now and since then I have been on 400mg Plaquenil, Folic Acid, Vit D, Calcium and Fluoxetine (for Raynauds). I managed to get an appointment last September with the Louise Coote Centre and saw Dr Sanna. I came away from there feeling I didnt reallly get anything from the appointment, and after having bloods taken there, he wrote to me and basically said that I have no active lupus, along with a load of other stuff he was basically as I read it saying I was fine!

I actually wrote back to him as I was confused by his comment of "no active Lupus" asking does this mean that I do not have Lupus at all or does it mean that the medication that I take keeps it at bay?

He also said that he would refer me back to my own rheumy but I have not heard anything from them either!

So I have now taken matters into my own hands (maybe rather stupidly but we will see) and I have stopped all of my medication!

It has now been 2 weeks and I am feeling fine, although I have a really itchy head and feeling tired in the afternoons, but not enough to make me want to sleep, and sores all over my back, although I am wondering if some of this is psychological as this was a big problem prior to my starting on Plaquenil.

I have the medication here still but I really dont want to take it as I want to, if necessary go back to the doctors and get a referral and re looked at in terms of diagnosis as I dont feel like the doctors think there is anything wrong with me!

I am struggling a little as I know how ill I have been in the past and I dont want this to affect my job but I really feel it is something I need to get cleared up! and the lack of a response from Dr Sanna has made this a difficult decision!

Keep your fingers crossed for me that I have done the right thing!!!!


4 Replies

Hi there Kelly.

So sorry your experience there wasn't a good one. Isn't it disappointing when you build your hopes up and then you come away deflated.

I would interpret 'no active lupus' to mean that you do have lupus but that it isn't active (is controlled) at the moment. Can you get an urgent appointment to discuss with your GP and perhaps discuss further your decision to stop your meds? Plaquenil stays in your system for a while so you may feel ok just now; when I reduced my dose once (on medical advice) my symptoms worsened after 6 weeks.

Your GP should be able to sort that rheumatology referral for you too.

I'm sure the doctors know you have medical conditions and perhaps the doctor you saw just didn't explain things very well. Sometimes the best of doctors just can't explain things to us, I find. And more than anything you yourself know you have been unwell in the past and you should have faith in your knowledge of your own body, and your desire to stay well. Our health is very much in our hands sometimes.

I hope this helps, I hope you get the answers you need and deserve, and stay well. ☺️

1 like

Oh no, that's such a drastic measure to take, especially when you don't really know what's the meaning of the blood test results and active/inactive. Why stop entirely anyway and not at least reduce, just to be on the safe side? The medication will stay in your system for some time, which is probably why you haven't felt rough yet.

Why not see the rheumatologist and got it clarified properly?

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Did you go to the Lupus Unit to have your Lupus "confirmed" or did you have some ongoing issue which you wanted to address there? Problem about Lupus, as far as I understand, a lot of people have active symptoms but little antibodies (especially after the treatment has begun). They got to start using more modern approach..e.g. DNA genetic marker testing. Looking at antibodies and tell the patients, you got no active disease or lupus at all, it's a boo doo ritual...


Good luck


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