I posted previously on this forum with my recent Lupus diagnosis…and I have some additional questions for others who can hopefully share more of their experiences.
I am on Pred, Plaquenil, and Colchicine (was on Naproxen, but have finished that) for likely Serositis (Pleurisy, Pericarditis, and GI involvement too), however I find that I haven’t received much relief until today since they increased my dose from 30mg to 50mg of Pred. I was on 20mg and 30mg of Pred with no relief.
I was also admitted to hospital until yesterday for a spine/neck/ back of head headache that only occurs upon moving with no other symptoms. 3 CTs and 1 MRI later they told me I have a clot, only to return the next day in my hospital room and confirm that I actually do not have a clot. A MD also confirmed pericarditis on the EKG, only to have another MD return to my room the next day to tell me that the Pericarditis isn’t that obvious from the EKG changes and that it may not be that. I was also seen by two Rheumatologists that now question Lupus because ‘the Prednisone should have worked already’ as I have been on it for three-ish weeks.
In addition, my ANA initially started with and developed to:
(everything over 5 IU/ML is considered positive according to my lab)
My C3 and C4 as follows:
C'3 0.89 g/L Range 0.8 - 1.8
C'4 0.18 g/L Range 0.1 - 0.5
And the latest one a week ago:
C'3 0.79 g/L Range 0.8 - 1.8
C'4 0.13 g/L Range 0.1 - 0.5
All my other Lupus tests have been negative. I have nothing else abnormal other than symptoms (ie. rashes, fever, etc.)
So my questions after all this:
1. Is it possible for the Pred not to work right away in treating the serositis?
2. Does Pred work on everyone?
3. Is it possible I in fact do not have Lupus?
4. My C3 and C4 continue to drop….is that normal even if I am on the Pred?
5. How long did it take for Prednisone to work for you?
6. Do my headaches sound like Lupus headaches? Or inflammation type of headaches?
I have also requested to be sent to a Lupus Clinic downtown Toronto…I don’t feel confident in my Rheumatologist…she had to Google Pericarditis treatment in front of me in her office. Apparently they do not cater to many Lupus patients…so…that was disheartening.
Thank you so much for your time and input. I wish you all the most wonderful and healthy New Year :D
Ps. I also post on the Lupus Site under the same name, should some of you notice this post there as well. I am looking for as many experiences as possible. I hope that's okay.