New here too from Englewood, FL

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Tibeka
New Member


Date Joined Sep 2010
Total Posts : 2
   Posted 9/13/2010 2:59 PM (GMT -7)   
Hi everyone,

My mom has SLE and rheumatoid arthritis. She was first diagnosed at 25 with SLE and now she is 61 with a recent positive result for RA as well. I have been accompanying her to her doctors appointments for a few years now, as she sometimes cannot remember things like she use to, so I am there to help keep tabs on medications and so forth. Something very disturbing has been happening in the last few visits to her rheumatologist. He admits to not understanding how to go about treating Lupus. The drugs he has tried with her were at their highest levels and nearly overdosed her. She is very sensitive to medications, we keep telling him this, yet he says smaller doses will do nothing. She can barely take pain pills, but can tolerate a half of a very weak strength pill once sometimes twice a day. He says that is stupid and does nothing. A few years ago he made her take an injection for her bones to help prevent osteoporosis. The injection was to last an entire year. She ended up with a terrible high sed rate and was not able to leave the house for that entire year because she was in so much pain. When we told him, he said that was not what caused it. He is still adamant about her taking more shots - the answer from us is clearly NO. So it is finally time to find a new rheumatoloist. Hopefully one that listens and believes what the patient is saying would be nice. The question is.. how do you go about finding one? Specifically one that believes Lupus is real, because even after her tests show positive, he is still in denial. This guy has even prescribed known medicines that should not be used by patients with Lupus.

Any answers would be appreciated.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/13/2010 8:18 PM (GMT -7)   
Okay, here's what we usually recommend when looking for a lupus-aware doctor.

Goto www.lupus.org. Use the site to find your local (or closest) lupus chapter. Mos chapters have their own webpages. Goto that webpage, and look until you find the "Advisory Board" -- these are usually local doctors who are interested in lupus -- enough so that they donate time to the lupus.org chapter.

Once you find a dr list, see which one will take your insurance and go from there.

Alternatively, use the chapter website to find when the local support group meets. Then after the meeting stick around and chat and ask about personal dr referrals.

I hope this current dr has some redeeming value -- from what you've posted I would say - RUN AWAY, RUN FAR, RUN FAST!

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/14/2010 3:57 AM (GMT -7)   
Lynnwood gave you a great resource to look at. They have so much information there and in my experience the local chapters of the LFA are very helpful and understanding and do what they can to make sure you are getting the best help out there. I also agree, please don't go back to this doctor. Get the medical records and see someone else quickly! SO sorry you guys had to go through this :(
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Tibeka
New Member


Date Joined Sep 2010
Total Posts : 2
   Posted 9/14/2010 6:54 AM (GMT -7)   
Thank you Lynnwood & Amy. I will check into Lupus.org today.

I appreciate the help so much!

T
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