I have recently, while awaiting double hip surgery, been diagnosed with tumid lupus and high positive ana.

My rumetologist was certain it was simply tumid lupus (diagnosed with skin biopsy) and that even if I was positive ana she would not diagnose me with "lupus"

she changed her mind once she saw how high a positive I tested. I had been tested off and on over the last 20 years and was always told my ana test was "boarderline"

my question today is: does anyone know of "hip pain" being a side effect of tumid lupus? I know I read it online somewhere but all of my doctors say not it is not related in any way. My hips show no arthritis but there is some weird deteriation of the "labral" or "gasket" of the hip joint.

So--anyone suffering hip pain with lupus of any form?

Thanks

I have been diagnosed with Tumid Lupus today. In reply to the woman about the hip pain, I have been having hip pains for about a year now. I had the rash about a yr ago and after a yr and a half I have been diagnosed with it. Please give me any information you can on the condition.
Thanks

Hello, tooyoung and jmanual!
This is my first post.
I was diagnosed with Tumid Lupus after multiple doctors, lab tests, and 4 biopsies, and many different thoughts and treatments.
Was set to go to Mayo but found a WONDERFUL doctor locally who was confident in her diagnosis.
I was part of a case study at a local University teaching hosptial and the diagnosis was agreed on by the over 20 physicians attending.

I had the sudden onset of raised red, ITCHY, rash to the sun exposed areas after a going to Florida.
The rash did not improve with oral steroids or creams.

Long story short: Got the diagnosis in Sept 2006. Placed on Plaquenil, Imuran, and Neurontin (for itch) and doing very well. Also use prescription steroid cream as needed.

I use sunscreen daily (Neutrogena 55 or 70), wear sun protective clothing (or use RIT 20 SPF treatment on all other clothes), avoid the sun from 10am-3pm, and ALWAYS wear a 4 inch sunprotective hat. Site for great hats: Coolibar

Off Imuran for 2 months and feeling GREAT!

I, too, am heat sensitive as well as sun sensitive.

Ankle, feet, wrists, and hip pain was also experienced for the first 12 months before the diagnosis. FATIGUE!!! OMG, I have NEVER felt that tired! Even after my thyroid was removed, have I never experienced such fatigue.
Now, my energy is back and feeling great.
Still have wrist and ankle stiffness when immobile---notice this when I get up from the chair/bed, etc

Hang in there. Knowledge is power!!

I was dignosed with lupus and fibromyalgia last year. I have found it difficult to get information on tumid Lupus. I even called the Lupus Foundation and they had nothing on it. Unbelievable huh! It is so rare that even they don't have information. I couldn't believe it . Plaquenil hasn't been working and from what I can gather both the Fibro and Lupus have overlapping symptoms. If anyone needs support I happy to be of service I know how difficult it can be attempting to deal with a disability. I try to keep my head up and not give into this disease and disorder I have.

I was diagnosed three years ago with Tumid Lupus. It has been an ongoing nightmare. I call it my trip to hell and back. I am not back yet, but working my way there.

I have all the symptoms of Acute SLE, but it doesn't show up in my blood work, nor did the Tumid Lupus. It was found through a skin biopsy after being treated for 2.5 years for psoriasis and a number of other conditions. However, tumid lupus is such a new sub-category of lupus I'm not sure there is an expert out there that can be conclusive without things progressing to a delicate state.

Diet soft drinks with aspartame are lethal, stresss, heat, sun , physical activity (NOT EXERCISE) are all lethal for me . They will bring on an attack.

I have been studying my body for three years and studying - reading about others with similar situations trying to make my own conclusions before speaking out.

If any of our elite specialists in this field are listening please take your time and start advising these forums.

Hi everyone, just want to say Hi and that i have all of the above and right now it's a living hell; new job, lotsssssssss of stress, so here i am starting a new flare up, and can't find anyone around me who understand ( you have to be in the same shoes to fully understand); so i am looking for friends to talk with, tips and infos, anything!

thanks,
Barbie Doll , Ottawa , Canada

I have had hip joint pain, unilateral, for days or weeks at a time, forcing a gimp into my walk.
Then it goes away.

With me, and I've never submitted to doctors yet, the joint flare-ups tend to be to the joint if it has been stressed by exercise or exertion. Index fingers pushed hard, in doing mechanical repairs (hobbyist mechanic). One or both knees sort, then OK again once I let the affected joints rest.

I find that stress of any sort, mental or physical, can cause a localized or general "attack" on the part or parts or whole body (debilitating fatigue for no real reason).

If it hurts, I rest and rest some more.

Lately, though, I am in about full remission. And this may be a fluke, but
I think it is my choice of a "new" medication. See my dedicated thread.

I don't get infections, tonsillitis anymore. I don't get sick with anything but the rare cold or flu... or my own body, insanely trying to kill itself. Lupus is a humorous "disease".
The docs don't know squat. They seem to make you all feel like victims.
Rather, you all are survivors and know that there are worse ways to suffer than from mere lupus, killer though it may be.

Hi
I was diagnosed yesterday with tumid lupus and I have read a lot of info on the internet but do not yet understand hwat to expect. I had blood work done today so in a few days I will know more about it.I have had hip and back pain for about 8 years but an MRI showed it was ude to a herniated disc. My hip and leg pain has been worse this last year and just had a spot on my thigh biopsied that was red and had some welts. I had not thought much about it since I had been stung by a wasp 4 years ago and thought that was just an allergic reaction that would pop up now and then. So here I am diagnosed, shcoked and scared. Any suggestions???

I am shocked to read all these stories as I was diagnosed with Tumid :upis through a biopsy just yesterday. I too have had hip and back pain for 6 months. I had MRI's and found out I had several herniated discs, a pinched nerve (which my Doctors say I need to have back surgery), 3 epidurals with no relief, and 2 years ago I was diagnosed with psoriasis under my finger nails. I was then diagnosed with Latent TB at which point I had to take a serious drug (cannot remember which one) for 9 months. I have never been able to exercise at all. When I do, I feel like I am going to die. I am currently extremely fatigued. I have to get my blood work done on Monday and I guess I will find out more. I too would like to find any and all info on this disease. I will keep you all posted on my end. I also would like to know if there is any other way we can find more people suffering from this..possibly through Facebook, Twitter or any of the other social networking sites. I am also curious to know how old everyone is. I am 52.

I am 47 and have recently been diagnosed with Tumid Lupus and I too have had hip pain in my right hip for a few months. I have had the Lupus, which was originally diagnosed as EAC for 10 years. I am just starting the drug plaquenil so we will see what that does. Going to a retinal specialist today for a retinal exam, as that is a side effect. The medication is really wreaking some havoc on my stomach at the moment, hopefully that will subside soon.

And fibromyalsia and raynards. All and all my Doctor's LOVE me.

Has anyone heard of Tumid Lupus as Negative ANA Lupus? Funniest thing we are either treated like we have lupus or we don't very confusing and very very frustrating!

I was diagnosed with tumid lupus approx 6 years ago. Confirmed by biopsy and clinial exam. My ANA has always been negative too.

I was diagnosed today with Tumid Lupus. I thought I had a terrible rash from stress. I have done the blood/urine test today and will go to the eye doctor in two days and then start paquinel....what are the true out there side effects. I don't like to read articles on the internet, but I would rather hear from real folks with it like you. Thanks!

I was diagnosed with tumid lupus through a biopsy, and my ana is negative. My tumid lupus symptoms are nothing compared with systemic lupus I have read about, but these itchy red splotches up and down my legs are driving me crazy. I had to stop shaving because that was irritating them, but it seems like they keep coming back no matter what I do. I am hesitant to go on steroids, which my dermatologist suggested if the topical cream doesn't work.

Does anyone have any suggestions for what could be triggering them, or advice on remedies that help?

Wow! As I look for my own answers for Tumid Lupus, I just find more questions. Who is out there studying this now? It didn't even look like the Lupus organizations were, but we seem to be growing in numbers.......this is supposed to be rare, but it appears that the only rare thing is information. WE are the experts on our disease!