As stated in many of my posts, I was diagnosed with SLE 25 years ago. My Rheumatologist retired and I am in the process of finding a new one. The first one I went to walked into the exam room , and states "You don't have lupus, you are on Enbrel and Enbrel causes lupus" She ordered blood work and it came back positive for lupus, RA and Sjogrens (which were my 3 diagnosis from my original Rheum). At the second visit she tells me , its not RA (even though it was +) she tells me that my diagnosis is Sjogrens and nothing else. SO... I get a 2nd opinion., This time I bring in my time line, all of my old blood work. I also explain that my treatment did not seem to be working prior to Enbrel (Methotrexate, Prednisone, Plaquinil) and my old Rheum decided to try Enbrel. In order to get it he had to tell the insurance company that I was serum negative RA. Now I am serum + RA, Sjogrens and SLE. The 2nd opinion also feels that I do not have lupus, I have RA. I looked up RA and feel that I do fall into that category BUT my question is this...was I misdiagnosed, even though my blood work is positive for SLE , or did the treatment create the RA? I ask this because before being treated with Enbrel I only had positive blood work for Lupus. After being on Enbrel for a couple of years, I then had positive blood work for RA and Sjogrens. As this happened to anyone else??
Also my family is celebrating that I "don't" have lupus and they are confused as to why I "want" that diagnosis. I told them that it's not that I want it, but I was always able to explain my "bad" days because I thought it was lupus. Now, I have the same symptoms that I always had and the same treatment for the past 7 years but not sure if I have lupus. Any suggestions? This was a very "bad" week. :-(
I am sorry you are having a bad week. How confusing… I had fibro first them shogrens and lupus. I think it does not matter too much what the name is that is given . They are all autoimmune diseases and create a lot of weird symptoms. My dr. Wasn’t sure I had lupus in the last 3 months because my symptoms were better. I think it is a relief for our family members when our disease is something less serious.
you were treated for 25 years by the same MD--I would try his or her opinion...I hate it when a new MD comes in and
completely shreds apart the opinion of a doctor who knew you well and followed you for so many years.
You may have Mixed connective tissue disorder...in which case I am not sure which treatment is best. The prednisone, though it can have side effects would be a good med or SLE or RA.
I agree with Flower, try not to get so thrown by the diagnosis.
If you are not comfortable with this new MD, you may want to look for another and/ or make sure that he/ she reads the medical records from your previous doc.
Thank you, Unfortunately my Rheum that retired also moved out of state. He sent some of my records to the first opinion doctor that I really did not like. I really trusted my retired doc , I felt he listened, did not over treat , and respected me. I do like the 2nd new opinion, she seemed honest and caring.. she at least admitted that she could not answer some of my questions but would keep me on the same treatment.
Flower , I also find it funny that we both picked the same name, except I am lower case flower. LOL
I am re-reading my post to you and thinking WOW: so many mistakes.
Anyway, my primary care doc left after 25 years and I am still adjusting to my new PCP.
Sometimes newer doctors have different education, training etc. c...I am happy to hear that you like this new person as
to me that's always very important.
My new PCP is "smart" I am told but cold and rushed. She's much younger than
my previous doctor and lived through a different era...Medicine is fast these days.
I love my Rheumatologist but she is nowhere near where you live. At least your new doc
is allowing you to continue with the same treatment regime.
I did try to let my doctor (PCP) know how important a relationship is to me, but
I think she's really hands off.
I am hanging in for now because I have such awesome specialty docs.
You are probably experiencing a loss after all those years with a trusted doc.
If it feels right would you think about letting her know how difficult this transition is?
This might let her know how important it is to have trust and faith in her.
There are many studies that support the fact that people who trust their doctors do much
better overall in managing their symptoms/ disease. Good Luck and stay in touch!