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10-22-2005, 09:16 PM
Hi---I am newly diagnosed (by biopsy) with TUMID lupus. I just got my ANA results and they are 1:320
Does anyone have any information about Tumid Lupus. I can find enough info to realize that only 1 out of 10 persons with Lupus have Tumid Lupus--Leave it to me to get the rare of the rare!!
Any information is helpful--I started Plaquenil a month ago and the lesions I have had for 6 years are totally gone now. I have had no problem with the medication at all.
This is a bit scarey and I thank you all for a place to share.
10-23-2005, 09:20 AM
I have never heard of TUMID lupus. What are your symptoms? I'm sure if you look on the medical websites, you should be able to find it somewhere. Sorry I don't have any info. My form of lupus is also not very common...CNS (lupus of the brain). Will see what I can find about TUMID lupus.
10-23-2005, 11:19 AM
Thanks so much for your response. I have searched the medical websites as has my physiatrist. There is very little information about Tumid Lupis.
Tumid Lupus presents with large lesions that are bright red--very photosensitive and ugly but not painful. They started about 9 yrs ago and as they are so photosensitive that they appear mainly in spring-fall many dermatologist simply decided they were some type of sun allergy and one even told me just not to go outside during those times of year!
They have gotten worse each year and occure on upper arms and trunk of body as well as face and neck. Needless to say there are not many sleveless items in my closet.
Finally this year I found a dermatiologist who seemed to know right away what it was and asked when the last biopsy was done. Biopsy???? No one had ever even mentioned that (and I had 5 previous dermatiologists)
A punch hole biopsy was done and the lesions are vascular and deep.
He then sent me to the best rhume that he knew of in the area.
She seemed to feel it was just the skin issue and that I would not have a positive ANA even though I had told her that I had been told over the years, many times, that I was boarderline.
Well the ANA was positive and she was open mouthed with awe at the fact that the plaquinel cleared the lesions in 1 month. She had thought that if it helped at all it would take at least 3 months to start to fade out. She is now running other blood tests to check my immune system.
I will say that the plaquenil is the best thinkg that has ever happened to me. I am still pretty limited by the fatique and brain fog but I am much better.
At the same time I have had right groin pain for 5 yrs. Had a hysterectomy, had a hernia repair (and no hernia) had an exploratory for adhesions etc. Had every organ ultrasounded, cat scanned and mri-ed.
I have had all bowel, colon etc. tests and was diagnosed with irritable bowel syndrom. Still have the groing pain.
In working with my PT for old back injury she said my God why has no one checked your hips---so it is both hips that have what has been determined through arthrogram to be labral tears of each hip.
Took me 6 months to get into a surgeon in Boston--only a handful in the country that do this procedure and only a few reccomended to do it.
Once I had my visit with him it has been a 6 month wait for surgery.
I am scheduled for 12/20 and 1/17 for these surgeries.
Once my hips are fixed then it seems that I will be able to tell more as to what the Lupus is actually presenting in me. It is so hard now to know if the fatique is from the constant pain and the memory issues from all of the pain meds.
All I know is I am praying that the hip pain goes away and I can get back to work. I have been out now since May 5th.
Any inforation you find on Tumid Lupus is greatly appreciated. One of my
doctors did a medical library search and came up with less information than I did.
Ah well-always a challenge. I am just so glad to know I'm not nuts and soon I will know just what symptoms are coming from what. So I feel like I am in the final countdown of a long long journey.
Blessings to you and hope to talk again soon.
10-24-2005, 11:04 AM
Hi Joey and welcome.
I have never heard of Tumid Lupus either. I did look it up when you mentioned it and what I found said it is a relatively new form they have started diagnosing??? I will say that the hip pain is something that is one of my major issues. I get shots in both hips every six months or so and it really helps overall with the inflammation in my body. I have a feeling tho that they may put me on prednisone this time tho cause she doesn't want my hips to get worse because of the shots. We'll see. That is one reason tho that my primary was convinced it was lupus to begin with. When the shots wear off my whole body goes wacky with pain and swelling but about 2 weeks after getting the steroid shots it begins to abate. The biopsy finally confirmed it but she knew for a while that is WAS lupus. HOpefully your surgery will help and you'll feel better soon.
10-24-2005, 04:09 PM
I learned from you - I hadn'theard of TUMID lupus either. What a journey you've had so far!
I too found Plaquenil to be a wonder drug, though my experience wasn't as dramatic as yours. For me, it reduced the pain and the fatigue significantly.
Please continue to post, you're among a group of friends here who understand the frustrations, celebrations and general confusion that lupus in any form can bring...