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00hope00
New Member


Date Joined Nov 2017
Total Posts : 17
   Posted 12/31/2017 8:37 PM (GMT -7)   
Hello all,

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:
1:40
1:80
1:160
1:40 (Homogenous)

My anti-dsDNA:
9IU/ML
23IU/ML
(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.

BreRosie
Regular Member


Date Joined Jun 2016
Total Posts : 54
   Posted 1/1/2018 7:20 PM (GMT -7)   
Hi there! I cannot answer any of your questions, sadly I am not a doc but I can tell you to hang in there as best as you can and you should most certainly, if possible get a new doc if you are not confident in the one that you have. I can tell you that not one case of lupus is the same. We are like snowflakes that way. I responded right away to prednisone and horrible headaches were one of my first symptoms . Then came fatigue ,rashes, fevers , etc.. I wish you the best of luck and I hope you will find relief and answers soon!

00hope00
New Member


Date Joined Nov 2017
Total Posts : 17
   Posted 1/3/2018 3:48 PM (GMT -7)   
Hello all again,

Thank you for your reply!

I just wanted to update you on my Rheum appt from today. I’m feeling better on the Prednisone at 50mg – I can finally breath and move without much pain today. Also got a little more energy. My anti-ds DNA went from a 23 to a 4 (Yay!). But as of yesterday, my C3 and C4 continue to drop still…even on the 50mg. My Rheumatologist confirmed Lupus today despite what her colleagues mentioned while in-hospital. She said that based on my blood work and symptoms…she’s confident that’s what I have. She is considering adding Imuran to aid in the Pred tapering off. She was also a bit disappointed that I requested to go to the Lupus clinic…but I explained that in the last few days I’ve had so many doctors make so many different diagnosis about my condition in-hospital that I feel insecure about the care I’m receiving. I just reiterated that I want someone knowledgeable in this condition and not afraid to help me or go back and forth. Anyway, she confirmed that I have ‘mild’ Lupus (although it does not feel mild to me, let me tell you).


I will keep this threat updated should someone else benefit from this information. Hope that’s okay?


I have also started drinking Tumeric Tea twice a day – I will post with any benefits, if any.


Have a wonderful day and thank you for reading my post!

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 48
   Posted 1/3/2018 4:35 PM (GMT -7)   
Hi 00hope00
My concern is the doc has told you mild lupus. As you said, it doesn't feel mild to you. Do you know if she has other lupus patients? There is nothing mild about lupus. Everything about a lupus dx should be taken seriously. Aside from the physical issues, a diagnosis can effect your ability to obtain life/ disability insurance.
Were you told to avoid sun exposure?
How long have you been on Plaquenil? Did she tell you it can take 3-6 months for Plaquenil to build in the system before you see any improvement?

00hope00
New Member


Date Joined Nov 2017
Total Posts : 17
   Posted 1/6/2018 7:21 PM (GMT -7)   
Hello Tinkerbee,

I know she has other Lupus patients, but I don’t think many to be honest. I requested to be referred to the Lupus Clinic DT Toronto, but that will take some time. She did mention to avoid sun, yes. I have been taking Plaquenil since the beginning of Dec, but I haven’t noticed a difference. She told me it can take about two months to take effect…

I went for my blood work again…so my Anti-DsDNA came back a 4 from 23. But my C3 and C4 are still dropping so she mentioned I am still in the flare. I still feel the serositis to be honest, although better at rest, I can barely walk still. She mentioned that if by the end of January there is no improvement, we will try Imuran. I just feel disheartened that prior to this episode, my body was able to recover from these episode on its own, yet now even on the medication I can’t seem to overcome this. It’s so scary
.
What does it mean now that the Anti-DsDNA deacreased? Does it mean the flare will improve?

Thank you so much for your time and hope you’re well 
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