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bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 4/17/2007 10:51 PM (GMT -7)   
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!!

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/18/2007 8:11 AM (GMT -7)   
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
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/18/2007 8:28 AM (GMT -7)   
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.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/18/2007 8:31 AM (GMT -7)   
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.
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


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jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/18/2007 3:08 PM (GMT -7)   
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.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)


bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 4/18/2007 3:35 PM (GMT -7)   
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.

hope4more
New Member


Date Joined Apr 2007
Total Posts : 16
   Posted 4/24/2007 3:26 PM (GMT -7)   
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

bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 4/25/2007 7:44 AM (GMT -7)   
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.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/25/2007 10:13 AM (GMT -7)   
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
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


MaryZ
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/20/2012 1:33 PM (GMT -7)   
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? 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14414
   Posted 9/20/2012 3:23 PM (GMT -7)   
Sorry MaryZ, but bhkhhh hasn't been on here for five years.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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