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Posted 4/18/2007 5:51 AM (GMT 0)
I had follow up today with derm & she upped my plaq. I thought my rash really looked good but she wants it totally gone. I did find out today that it is not scle but something called tumid lupus, it is suposed to be real rare. She is also still concerned with organ involvement. She was real upset with the treatment new rhuemy gave me,when she found out she didn't want to see me again she really lost it. So she is sending me back to old rhuemy so at least I'll have someone to check for organ damage. She also said that I no longer needed rhuemy to dx lupus that she has allready done that with the biopsys. I just don't understand why this has been this hard. It is almost like most doctors are scared of me! I'm hoping the extra plaq will help me feel better. If anyone has tumid please let me know so I don't feel special!!
Posted 4/18/2007 3:11 PM (GMT 0)
bhkhhh,

I don't know much at all about Tumid Lupus, but what I do know is that it's a subtype of discoid lupus, and that 1 in 15 people with tumid lupus develop SLE. It sounds like your derm is right in sending you back to your old rheumy in case you develop any other problems. I guess the good news is that you have a diagnosis.

Good luck.

Pat
Posted 4/18/2007 3:28 PM (GMT 0)
bhkhhh, thank goodness you have a good dermy - it's so frustrating that so many docs seem to work against us and almost want to prove that we are not sick instead of trying to help us feel better. I hope your old rheumy will try to help. I've never heard of tumid lupus either, but form what you said it sounds like you need a doc who will stay on top of things and keep a watch out for possible organ involvement. I really hope the increase in meds helps some. Take care and keep us updated on how you are doing.
Posted 4/18/2007 3:31 PM (GMT 0)
Hi bh, I'm glad to hear that your doc gave you some answers. Sounds like she is on your side and is working to be an advocate for your health. Good to know there are docs like that still out there isn't it? :) Take Care and I hope you can get in to see a rheumy that will check it all out for you.
Posted 4/18/2007 10:08 PM (GMT 0)
Hi B, it sounds like your dermy is on top of things, that is awesome! Now maybe this will catch your rheumy's attention and they will give you some answers too, I pray you don't have organ involvement.

I have never heard of tumid either, so I'm not much help there. Take care and keep us posted on how you are doing.
Posted 4/18/2007 10:35 PM (GMT 0)
Thanks everyone. I do feel very comfortable with my derm, she has been a real godsend to me. Now if I can find a rhuemy that at least acts like they care.
Posted 4/24/2007 10:26 PM (GMT 0)
bhkhhh

You are the only other person I have seen that has a dx of tumid lupus. I had a biopsy done on my chest three years ago and the result was tumid lupus. I also have Crohn's disease and suspected SLE. My ANA was negative until the last blood test and it came back positive. I get the rest of my test results next week. Keep me posted!
Good luck,
hope4more
Posted 4/25/2007 2:44 PM (GMT 0)
Hope, I go to rhuemy next mon I'm hoping she does'nt just dismiss me like she did last time. I have a very low ana 1:40. Both derm & pcp expect it to go up, they also suspect sle. I see you have crohn's, I have terrible problems with my bowels. My bowels was my first signal something was wrong & then with time the rest of the symptoms came. I haven't been able to find much on tumid lupus so please keep me posted with any updates with you. Oh, If you have a rash, do you notice it feeling numb & tingly at times? I'll be wishing you luck on your results.
Posted 4/25/2007 5:13 PM (GMT 0)
Hi bhkhhh:

I'm sorry this is going to sound like a stupid question, but I'm gonna ask anyway. Is is normal for your ANA to be low or "normal" like it is in Tumid Lupus? Normally, with SLE we've got positive ANA's that can be very very high. I know the consider 1:80 just barely positive. My daughters is 1:640, and I know several members here sit at that point and up from there.

I'm not well educated on Tumid Lupus, that's why I ask. Good luck with your appointment and I'm looking forward to learning from you about Tumid Lupus.

Take care,
Barbara
Posted 9/20/2012 8:33 PM (GMT 0)

Hello bhkhhh,

This is my first time here.  I also was diagnoised with tumid lupus.  Unlike you my dermo was unfamilar with how to treat the disease.  I am already on Plaquenil for my Antiphosphilipid syndrome and fibro.  I've been seeing a rhumo for 7 years for my other conditions.  The thing that bothers me is the itching.  It drives me crazy.  I wish there was something I could put on it that works.  Do you have any suggestions? 

Posted 9/20/2012 10:23 PM (GMT 0)
Sorry MaryZ, but bhkhhh hasn't been on here for five years.
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