I have seen two different rheumatologist's one which I have seen for over four years...the new one states I have systemic lupus and wants me to start benlysta....old one states inconclusive due to negative ana....I do have many lupus symptoms....am so confused....old one has been saying polymyalgia rhuematica years but has stated she is not positive until blood work gives better answer...do I get another opinion....where do I go from here....if meds will slow or stop progression am all for it....but don't want to take something unnecessary....have been on prednisone n plaquenal for three years.....
Here's an analysis of benlysta, which I did for another member (some parts may not apply to you) last year:
I don't think there are many Lupus patients currently on Benlysta.
Basically there are a few good reasons for this.
1. High costs. Estimated annual cost $25.000-$30.000
2. Patients with mild Lupus, whose condition is managed by NSAIDs,
periodic steroid treatment and anti-malaria meds, should not be put on
such an expensive protocol, considering the immunosuppressive
profile of Benlysta.
3. It is not recommended for Lupus patients with neurological involvement
and kidney damage.
4.Patients receiving any therapy for chronic infection should not begin therapy with Benlysta.
5. Benlysta has already received somewhat of a "bad wrap" because of the higher number of deaths in the Benlysta group during the clinical trials, compared to the placebo group.
Some of the above observations and facts may not be applicable to you.
My opinion, is that you may not be a good candidate for Benlysta, because of your genital herpes type one diagnosis, which is not curable.
The immunosuppressive action of Benlysta, may trigger an HSV1 outbreak or reactivation when dormant, but you need to discuss this further with your treating doctor, in detail.
A thorough risk/benefit assessment should be done to my opinion, before making a decision.
Either way, I wish you the best outcome, whatever is decided at the end."
In your case, should there be an underlying infectious condition. which has not been detected (pathogenic mycoplasma infections and their co-infections are notoriously difficult to detect), benlysta might make it worse,
being an immunosuppressive drug.
Also of interest might be a thread here titled "Low T7 (FT4I)" from July 18
2014, but please take your time to read the entire thread.
It might help uncover the root of your issues.
Lupus diagnosis is a very complex one and I'm not surprised to read about the conflicting opinions between your 2 rheumatologists.
You must understand that there are also a lot of overlapping symptoms between the 2 suspected conditions, making their distinction, even more challenging.
Please let me know if you need any further details.
Please note that the above comments reflect only my views and my opinion,
and are not intended to replace medical advice.
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