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Tumid Lupus - New Here (Page 1)

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Hi everyone. I have just been diagnosed with tumid lupus. However, I have other symptoms besides the skin rash/scars. I have very chronic fatigue, leg and hip aches/pain(sometimes) and memory/concentration and brain fog problems. When in the sun or heat I feel very sick. I tested high positive for ana's. I've been to at least 25 docs previously trying to find out what was wrong. Finally, after this rash showed up a few weeks ago the diagnosis came. However, i'm wondering if the symptoms other than the rash are related to the tumid lupus? I'm so new to all of this and have no idea what to expect. I will see an opthamologist next week for a baseline exam so that I can begin taking plaquenil. Do you think it might help with the overwhelming fatigue? Any information would be greatly appreciated. Any suggestions for reading to become more knowledgable would help too. I'm headed to san antonio to sea world next week. Am I suppossed to stay out of the sun? What about the heat? Does it affect lupus also? I have not seen the rheumotologist yet. The dermatologist told me I need to wear sun screen always.
Thanks a bunch!
Jtongen
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First Helper farawaygirl
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replied June 24th, 2004
Tumid Lupus
O.K. I feel really dumb, here. I've never heard the term "tumid lupus." is that sle or the discoid lupus?
Lizbet
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replied June 24th, 2004
?????
I'm not sure what tumid lupus is either. Hopefully it can be explained. I am wondering along the same line as her, about some symptoms that I am having that are strange. I have been having this really weird sound in my ears. It is like the sound you hear when you hold a big shell up to your ears and you can hear the ocean. It is really annoying and somewhat throws off my equilibrium. Has anyone else ever felt this before?
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replied June 25th, 2004
Active User, very eHealthy
I've never heard of that either...I thought there were only three types:
discoid, systemic, and neo-natal.

I think I would be asking my doctor a lot of questions!
Hugs, ladybrannon Smile
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replied June 25th, 2004
Re: Tumid Lupus
Tumid lupus - from what I know so far- is a very rare form of lupus. It affects the skin only. However, in 10% of the patients is evolves into sle at some point. The rash is over the upper trunk of the body. Small round "dots" that do not itch and when biopsied are shown as lymphacite cells rather than vasculitis. I found only small blurbs when searching the internet. It is also known as erythrimitis tumidis (sorry about the spelling) and very similar to discoid. It is treated with antimalaria drugs. When I did a search on ehealth forum website I did find a couple of post about it in the past. Apparantely it's very rare. Unfortunately for me, looks like I possibly have the symptoms for sle too and will see the rheumotologist early july. You can have tumid withouth other symptoms and without high ana's. That's all I know about it. I'm searching for other info and will share if anyone is interested. I did find a support group for tumid lupus but no one has visited there since february and only 14 members. So not much help.
Jtongen
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replied June 28th, 2004
Active User, very eHealthy
Thanks! You taught me something new! Smile

hugs,
ladybrannon
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replied June 28th, 2004
Tumid Lupus
I was also diagnosed with tumid lupus in october 2003. I just got back from the beach and did well, but stayed completely out of the sun and tried to avoid the heat. I have found that I am very heat sensitive. I had heat exhaustion and dehydration (which may have been heat stroke--refused to go to the doc) recently, after working in my yard in the early morning. I knew I was overdoing it due to the humidity, but it caused my entire body to go into muscle cramps as well as shaking, near-fainting, trouble breathing, etc.

I have read that tumid is more like the scle type of lupus because it can carry some side effects. I take 400mg plaquenil per day and use sunscreen lotion like crazy. Sometimes I just have to tell people that I can't do something because of the sun, heat, or my fatigue. My biggest battle has been fighting mouth sores, especially on my tongue. The sores that were biopsied and diagnosed me were across the top of my back...They never hurt, just wouldn't go away. I ocassionally get scarring sores and have more trouble healing when I have a minor skin wound.

Hope this helped a little. There's not much out there about it, my docs (other than the derm) had never heard of it.

Find a sunscreen lotion that you really like (my favorite...And i've tried a lot) is alba botanica sun shade with spf 16. It can be ordered online or bought at gnc and some spas. It's not very expensive ($10-15/bottle). It has a light odor, but not overwhelming and makes your skin very soft.

Heading back to the coast for the weekend...Would be nice to actually go to the beach with my kids for the day! My husband and I are renewing our wedding vows on saturday after a recent separation (long, long story). We'll be having them on folly beach during sunset (see, I planned around the lupus! The habits we develop).

Good luck with the docs. Hope this helped a little and let me know if you hear any other information. Feel free to pm me if you have questions or would like to chat!
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replied August 8th, 2004
Tumid Lupus
I understand exactly how you are feeling. I am from in and spent a great deal of time visiting doctors, and trying to find an answer to why I felt the way I did. I ended up in chicago, seeing two wonderful specialists. Tumid lupus, and fibromyalgia.

You should use sunscreen, of course. It will irritate the lupus and may cause it to break out, or become more intense. I will admit though, I love the outdoors, and do still go to the beach, pool, etc, with my children. I notice though, that heat also causes my chest area to always be very red. I get so irritated with people are always saying, "oh you sure are burnt".

You should see a rhem. He will be able to help you even more with the pain in the joints and muscles. I know that mine has done wonders, although, I still do have days where I feel so weak and sore. I think the hips is the worse pain.

There is some peace in finally having a diagnosis. There was a time there, I had doctors making me feel like I was losing it or something.

Please feel free to contact me, and we can talk more about this.
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Users who thank TP for this post: mfk 

replied August 9th, 2007
Tumis Lupus
I am 29 years old I have had nodules on my cheeks since i was 17 never cared that they were there until my twenties. So I decided to go to the docs who did not have a clue "oh maybe contact dermatitis". I seen 6 different doctors. I was so frustrated I went home of course surfed the net and came across tumid lupus and how RARE it was and said THATS WHAT I HAVE! After four years one more dermatologist and a skin biopsy I have tumid lupus I have two nodules on both cheeks that come and go no pain or sensitivity and the older I get the longer they stay. I have had a couple minor health issues recently but have been told it was not related such as pleurisy (which is related to sle) and rheumatic pains(which is also related to sle) swollen lymph nodes(which is also related ) but all my blood work is fine. hmmm.
I have found out that Sun block is your best friend and a nice brimmed Hollywood hat and big sunglasses I am supposed to get steroid injections but I don't I use EMU oil that can be bought at any GNC store and a wound healing cream both anti inflammatory and it seems to help. also I use Vanicream sunscreen SPF 60! Great if you have sensitive skin!
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replied August 9th, 2007
Tumid Lupus
I am 29 years old I have had nodules on my cheeks since i was 17 never cared that they were there until my twenties. So I decided to go to the docs who did not have a clue "oh maybe contact dermatitis". I seen 6 different doctors. I was so frustrated I went home of course surfed the net and came across tumid lupus and how RARE it was and said THATS WHAT I HAVE! After four years one more dermatologist and a skin biopsy I have tumid lupus I have two nodules on both cheeks that come and go no pain or sensitivity and the older I get the longer they stay. I have had a couple minor health issues recently but have been told it was not related such as pleurisy (which is related to sle) and rheumatic pains(which is also related to sle) swollen lymph nodes(which is also related ) but all my blood work is fine. hmmm.
I have found out that Sun block is your best friend and a nice brimmed Hollywood hat and big sunglasses I am supposed to get steroid injections but I don't I use EMU oil that can be bought at any GNC store and a wound healing cream both anti inflammatory and it seems to help. also I use Vanicream sunscreen SPF 60! Great if you have sensitive skin!
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replied February 7th, 2008
I have tumid lupus
I was diagnosed a few years ago. I get large rashes on my outter thigh that ich like crazy. I have had 2 skin biosys to make sure of the diagnosis. I usually get them when I have been pregnant, on the pill, or during my period. I am not sure why it showed up rigth now. I havent had one in about 2yrs. I also have joint pain in my wrists and do have memory problems/word finding issues. I also have Sarcoidosis, so its hard to know what is happening from what. I do not get treated for any of it cause there really isnt anything out there that can really help. The fatigue has alwasy been the hardest part. Its hard for people to 'see' it, so they have a hard time understanding it.
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replied March 17th, 2008
Wow- I am NOT alone....
I was diagnosed with Tumid Lupis in January of 2007. The rashes developed in the summer of 2006, and just never went away. Creams etc. didn't help. I was dead dog tired all that summer and fall, and finally decided to see what was going on. The skin biopsy came back as Tumid Lupus, but my ANA was negative, so apparently it's not SLE. But I still have severe arthritis in my hands and feet, and am very very tired. Had two allergic reactions to plaquenil, so can't take that. I had been diagnosed with Reynolds phenomenon when I was 30 (12 years ago) and that has worsened - I now get neuropathy in my hands and feet. Oh, and then there are the mouth sores - primarily on the back of my tongue and causes my throat to swell. Went to my rheumatologist friday after a really bad flare, and am waiting for the results of another battery of tests. I guess what puzzles me is the need for the Dr to associate or disassociate the variety of "illnesses" I present to Lupus. It doesn't seem like the treatment method differs regardless of the connection. Very puzzling...
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replied March 30th, 2008
tumid lupus...
i myself was diagnosed with tumid lupus..does anyone here has the same kind of lupus?
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replied March 30th, 2008
tumid lupus...
i myself was diagnosed with tumid lupus..does anyone here has the same kind of lupus?
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replied June 16th, 2008
Tumid Lupus
I have had Tumid Lupus since I had my son in 1988, it was not bad then but it seems to be worse now. As I have read other people's write-ups they too are sensitive to the heat like I am yet my dr tells me that it has nothing to do with the Tumid Lupus!
I have red blotches that raise on my skin when I get too much heat or sun, I also am very allergic to jewlery and my eyes seem like they burn in bright light! I seem to tire easy too.
Though I do have fibro myagia and athritis and I am only 39 yrs old and have had them since my mid 20's I have joint pain in good weather, wondering if it's due to the Tumid Lupus? Anyone out there with the same problems?????

plz feel free to write me.

Good luck,
Kellysue
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replied June 25th, 2008
Tumid Lupis
I was diagnosed with tumid lupis yesterday after seeing a derm for 3 months now and 4 biopsies. I have had severe joint pain in both hands, feet, and knees for more than 5 years and told it's osteoarthritis. I use Mobic 15mg. daily for the joint pain and started the Plaquinal yesterday with my eye exam tomorrow. My rash started on both breasts and now is on the mid trunk on my back and on ny butt cheeks.(so attractive) I've been on 2 rounds of prednisone and although it clears the rash it comes back quickly once meds are stopped. My derm says no sun--she says it's the worst offender of the disease and unfortunatley, I live in S florida and love the beach sun and outdoors. Sunscreen will become my friend.
I'm not sure how the fatique plays into the picture becasue luckily I don't have a whole lot of fatique but I also try very hard to stay active and work out at least 1-2 times per week. That was the advice from my Rheum last year when he really couldn't explain why I had osteoarthritis everywhere beginning at age 40-I am now 51 and although the arthritis has not worsened the Mobic is bothersome to my stomache and I have to use Protonix with it. I'm hopeful that adding the Plaquinal will be the answer and was told by my mother's (who has Rheum Arthritis) Rheum that Plaquinal would help with her fatigue, but takes months to see the benefits.
I eager to learn as much as I can about the disease and am curious about the EMU oil and how it works.
Hope I offered some info to you and thanks for sharing.
Gatormom
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replied June 28th, 2008
Male with Tumid
I am a 45yr old male and have just recently found out that I have Tumid Lupus. I work as a Chief Engineer in a refrigerated warehouse, unfortunately my work is in the heat and sun. Have seen a rahm and all tests came back normal except for a slightly elevated liver level. I too have extreme exhaustion, muscle pain, joint pain, headaches. It really gets worse when I am in the heat and sun. So I guess I will become a person who has to do all his work and fun in the dark! Does anyone have suggestions on how to survive with this? I am taking 400mg of plaqunel and am doing quite well with it, so far.
Good luck to all with this, and if anymore information is found please share. I will do the same.
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replied July 29th, 2008
Tumid Lupus
I was diagnosed with Tumid Lupus a little over a year ago after fighting it for a couple years. I don't know what people are talking about saying that it doesn't itch. My rash involves my face, arms, back and chest. Basically everything above the bellybutton and it itches like crazy, especially in the summer. I wear 70+ SPF at all times, am taking Plaquenil and predisone, and am always tired, have headaches almost daily, and have problems concentrating.
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replied February 13th, 2013
Indeed! Itchy all day and night! I'm not sensitive to sun. It's clear that it presents itself so differently in everyone. And I got it at age 45. There are not rules or boxes to fit into.
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replied July 30th, 2008
I have been diagnosed with tumid lupus, but I can find very little about it. I am a little concerned. I moved out of the southwest and into the midwest (less sun, and doctor recommended). I keep hearing that lupus is a disease of middle aged women, but I am a 27 year old man.
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replied August 3rd, 2008
lupus & skin rash
I suffered with what was thought to be osteoarthrits for more than 10 years and in March I developed a suspicious rash on my chest and although ice seemed to stop the itch, it never really went away. I finally went to a dermatologist in May becasue the rash seemed to spread to the torso and itched like crazy! Then came my dx of tumid lupus. I've already had my baseline eye exam and started on the plaquenil about 6 weeks ago and really have not seen great benefits yet. They told me it will take up to 3 months for the plaquenil to kick in. I've been on and off prednisone since May and just today d/c it and have not had a major break out yet. The rash is still minimal on my chest but not so itchy and I hope it will remain under control becasue the prednisone plays hell with everything else. I am always tired and try to exercise at least 2 times a week, becasue I work full time as well.
Try to get on the plaquenil asap-My rheumatologist started me on the 400mg. right away becasue he said the lesser of the 2 evils was the plaquenil rather than to continue on the prednisone any longer than necessary.
Hope this helps--the best place for info is the internet. Good luck.
gatormom
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