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The last book I bought regarding SLE was Dr. Wallace's Lupus Handbook, 2nd edition, which was some years ago. What are some of the newest, most reliable resources out there at this time? I feel behind the 8 ball because as I stabilized and did well for so long, this just sort of fell by the wayside. I need to re-educate myself on the newer information and treatments. I can see this is going to be an uphill battle, since my primary wants to drop or has suggested dropping my diagnosis. One… read more
You can also sign up for the newsletter from the Lupus Research Alliance they keep me regularly up-to-date.
The Lupus Foundation of America has a lot of resources, specifically about ongoing research, clinical studies, etc. They also have webinars with rheumatologists on subjects such as Lupus and the skin, Lupus and Fatigue, Lupus and depression and so on. Another resource brought to you by the LFA is UsinLupus.com they provide a weekly tracker for your symptoms, possible symptoms to ask your doctor, etc.
BTW, I agree with our team member above. If the diagnosis was made by a rheumatologist, and the PCP is not qualified to question this diagnosis; I would a) find a new PCP ASAP b) get a referral to an excellent rheumy
I hope you are able to get what you need.
That is awful and if your primary is not qualified to dx lupus why does he or she think they can arbitrarily drop the diagnosis. I think I might search for a new primary. I say this as nurse.
My favorite reference book is the Lupus Encyclopedia by Dr. Donald E Thomas. I find it to be very beneficial and full of information, factual information. He also has a facebook page I follow if you are on Facebook. Best of luck to you as you navigate this new wrinkle
I love the Lupus Foundation, Lupus.org etc. They have reliable info.
Can google "Lupus Foundation of America"
& get lots of great links, information, can call
& talk to a Lupus Doctor.
God bless you all.
Need a cure now.
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