Tumid Lupus with SLE Symptoms?

Hello @seesawer,

Welcome to Connect. I'm so sorry to learn about all that you are going through, but glad that you have joined this community.
I found this paper in the Journal of Clinical Rheumatology: "Coexistence of Tumid Lupus Erythematosus with Systemic Lupus" which you may wish to read, by clicking on this link: http://bit.ly/2oUz3Cx

We also have a few discussions that might interest you:
Tumid Lupus: http://mayocl.in/2oQcJtT
Stills Disease: http://mayocl.in/2ogiLAT (@cathyh has written extensively about lupus in this discussion)
Multiple family members with autoimmune diseases....is there a link? http://mayocl.in/2f29HxG
Know the Symptoms of Lupus: http://mayocl.in/2oUyXe0

In the meantime, I'm tagging others who have mentioned having lupus, but not specifically this rare type, and also discussed CellCept.
@paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @seesawer?

Hi @seesawer, I experienced all of the symptoms of lupus with no positive test results. Eventually, we figured out that I had drug-induced lupus, and all of the symptoms were caused by one of the medications I was taking at the time (called Sandostatin). My pharmacist actually figured it out by reading the full-lencg prescribing information found online. Instead of referencing the words drug-induced lupus, the documentation noted that some patients develop antibodies to the medication (or something like that).

In searching for others who have tumid lupus, try googling for online support groups, and look on Facebook. Facebook actually has thousands of support groups for medical conditions. These have helped me a lot; it's always nice to "talk" to someone who has been through what you have been through.

Best of luck to you!

Hi @seesawer, another great resource for doing online searches is Google Scholar - https://scholar.google.com/. You can do a search for "drug induced lupus" and it will bring up a lot medical articles which you can filter by years on the left side for the latest information.

Hoping you find an answer soon!
John

Hi, I was diagnosed with Tumid Lupus in 2010 in Atlanta and shortly after that moved to the coast. I really haven't received any medical care related to the lupus. Although my health has continued to decline so far none of my doctors have related any of them to my diagnosis of Tumid Lupus. I have just recently started to see a new doctor who thinks that my problems are related to lupus, but he listed it as unspecified SLE with unspecified organ involvement. He has ordered several blood test, written new creams for my skin and I now have an appointment with a rheumatologist in June. I have begun to do a search and have found a lot of information on SLE, but very little information on Tumid. I would appreciate any information and advice of what questions I should be asking and what if any connection there is between the two types of lupus. My docotr also stated that I will probably want to start thinking about some of the drugs available for this problem. I had seen another rheumatologist because one of my doctors think I suffer from RA. I wasn't comfortable with him after he told me that if I was going to be his patient I would do everything he says and take every medication he tells me to take. And on the first visit he wanted to give me several injections of medications I had never heard of. I am very sensitive and allergic to many medications and I felt that he was telling me I would have no say in my own care, so I left and didn't follow up. Probably not wise, but I am so ready for answers this time. Any information and advice will be very greatly appreciated. I seem to have a lot to learn.

Thanks in advance, and I feel so fortunate to have found a site with someone else who has the same diagnosis. There is just so little out there about this and I have not found anyone until now who has first hand knowledge. 🙂

The discussions here are very informative. I think my lupus was drug induced as well and im just now getting well enough from this past year and all the complications and reactions it brought. I know i have discoid lupus but it changed last year to include organs. The rash started when i was on Humira for six months, as well as sepsis and bladder infection, and cavitary lung nodule. Long story, i have RA and psoriatic arthritis, making it all very confusing. The rash is almost gone, yey, it covered my body and made living miserable.

I am new to discussions on this topic personslly, but i did work for the Lupus foundation of America. They have much information to share, and have a a great support team.

My best wishes for everyone. Julie

Hi @sandpiper09,

We are so happy that you've joined us on Connect, and my sincere apologies for the delayed response.

This specific type of lupus, also known as tumid lupus erythematosus (LE), is indeed a rare variant. @billjan posted about tumid lupus back in 2012, and @v1crew has also discussed subacute cutaneous lupus erythematous. You can view that conversation in the Transplants group, by clicking on this link: http://mayocl.in/2q2siPrI

I did find this article in one of the medical journals, that may interest you:
Tumid Lupus Erythematosus: An Intriguing Dermatopathological Connotation Treated Successfully with Topical Tacrolimus and Hydroxyxhloroquine Combination: http://bit.ly/2pvXuqv

@sandpiper09, what symptoms do you have that fall out of the norm?

What is timid lupus? I have lupus e

<p>About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as a definitive diagnosis of Systemic lupus erythematosus (LUPUS)</p><p>I can't ses an RA Specialist until September. But I just wondered if any of you have experienced any of these complaints of mine:<br />(1) Tired. I could sleep all day<br />(2). Burning/itching under my skin. It feels like ants or something. But scratching does no good at all.<br />(3) have trouble sleeping.<br />ThNks for sharing with me.</p>

Sorry to hear of your diagnosis , but that's the same way I feel! Hopefully the Rheumatologist can help with your symptoms! I wish you the best! I will pass on any information that might be useful. When I go to my next appointment .

Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will join in and share information that may be helpful. I don't have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful - http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions - http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John