Hello all. I was just diagnosed with lupus with low numbers by a rheumotologist
in my area. I don't like her and when she called me with the news she told me there was nothing she could do for me. That is so inappropriate to tell a new patient. So my question right now is should I be on any meds? I did make another appointment at a lupus center near me but i don't go until May. Do you think that is okay? Should I start being tested for my kidneys, heart, lung, etc now? I am feeling pretty good right now and the rest of my blood work was ok like cbc and sed. Can I just sit here and wait until my appt. in May with the specialists? I am very aware of changes in my system and would know immediately if something was wrong. What do they give you for meds anyway?
Thanks for any feed back. Scared! Linda
Until your appointment it will be important to have your blood work done regularly to make sure your sed rate etc stay okay.
As for medicines, it will typically depend on how severe your disease process is. I have MCTD which is quite similar, and my meds range from high dose anti inflammatories, to High dose prednisone to Methotrexate when things are bad.
It is a chronic illness, but for the majority of people it is controllable.
What part of NJ are you from? (Judging by the name) I have had Lupus for 13 years (since age 12) and have a wonderful doctor with excellent bedside manner who's the authority on Lupus. His name is Dr. Lahita and is located in Beth Israel in Newark.
Some docs could be real jerks, but he's the nicest I've had in 13 years! As long as you keep with your meds and have a low salt diet, Lupus won't control you.
Hi I am located right outside of Newark in Linden. I'm still at the point of more testing but totally disliked the rheumy I first went to. I found a whole group at Overlook Hospital in Summit. I have an appt. in May. I hope that's not waiting to long. Do they give you everyday meds for lupus or only for flare ups? At the beginning, how often did you have to go for bloodwork and like the other poster stated, my SED rate? I'm 57 but I think I've had this for several years now. You were very young when you were diagnosed! Thanks for you doctors name. I will keep him in mind Hope we all feel better!!
Hi & welcome. Me, too!---meaning, I'm sorry you were talked to like this! She may have meant, "Your labs & clinical symptoms suggest you don't need meds at this time". But if that's the case, she should have cited specific reasons (all tests & findings that prove lupus is present but mild), indicated in what scenarios she'd consider meds, told you to call if you noticed changes, told you when you should come in for followup, and explained any necessary lifestyle changes (e.g., should you avoid UV rays?).
QUESTION (only curious): what SUBSET of lupus did she diagnose? I can only think of one, Drug-Induced, that could warrant a brief explanation (but not that brief!), and that would be ONLY if you'd already discontinued the culprit drug & your labs showed only a little "hit". But for DISCOID (skin-only) or SYSTEMIC (especially), she should have had considerably more to say!
I'm considered systemic but subacute (no major organ involvement). I take an everyday med (Plaquenil) & OTC ibuprofen, and have a check-up every 4 months, more often when warranted.
In your shoes, I probably wouldn't seek add'l tests before the May appt, only because good drs. re-do everything, as opposed to trusting labs done elsewhere; but you could request copies of your labs to give to your new dr.
Kidney problems show up, I think, in basic labs as elevated BUN & creatinine, or in urinalysis, as protein. As for heart, lung, and brain, presumaby you'd have noticed/reported some symptoms. BUT if you start feeling punk before seeing your new dr., you could call & beg to come in to see him earlier.
While waiting, you could do some reading, starting with the "sticky posts" (permanent info posts) at the top of the thread list. Also, your local library should have books written for patients. From reading, you could get the lingo down & also see where your symptoms/labs fall on the wide lupus spectrum (and that could be somewhat comforting). I hope you keep posting here! Sending my best wishes, sincerely, Vee
Thank you for all your answers. My doctor didn't suggest any type of lupus. But I do have symptoms. Hair loss, very slight rash on neck and cheeks. very tired, I trip a lot, joint pain in ankles and knees, sweating a lot, etc. And I do just feel like you said "punk, yucky". Oh and very nausous. I still do alot around the house and babysit my grand daughter for an hour or so. I will keep an eye on my daily feelings and will do something immediately if I feel the need.
I actually have a family history of autoimmune diseases. My mom had lupus but she died very young, my uncle (mom's brother) had als and lived for 2 years after diagnosed and 2 close cousins have fibro. So I guess I shouldn't be so surprised with this diagosis. Thanks again for all of your answers. I will keep in touch as I read the boards daily now. Linda