Share this:
seesawer
@seesawer

Posts: 1
Joined: Apr 09, 2017

Tumid Lupus with SLE Symptoms?

Posted by @seesawer, Apr 8, 2017

Hi! A couple years ago I visited the Mayo Clinic, which ultimate led to a biopsy and tumid lupus diagnosis.

Since then, I’ve also gotten the SLE label. While I don’t have positive ANA, I have every SLE symptom under the sun (including tendinitis, painful joints, R.A.-like nodules and deformed finger joints, MS-like symptoms/spasms/muscle weakness, hair loss, 0 in both eyes on Shrimer’s test, tachycardia/flushing, some high creatinine readings, history of colitis/lower G.I. bleeding, vasculitis bruising, looped capillaries, blah blah blah).

I’ve done CellCept (which helped a lot but caused me to puke all the time and lose 50 pounds). I also (miraculously enough) qualified for Benlysta and still go for once-a-month infusions. It doesn’t last as long as I’d like, but it’s changed my life. (I literally live for the first 2 weeks of the Benlysta cycle). 🙂

I understand tumid lupus is fairly rare, and that only 5-10% of tumid lupus patients have SLE symptoms (and almost none of those have positive ANA). I’m wondering if anyone else out there fits this profile? If so, I’d love to compare notes. Thanks!

Liked by shanna34, jaclyn

REPLY

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?

Liked by ddfinn

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?

@kdubois

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!

Jump to this post

What is timid lupus? I have lupus e

It’s like you are writing my story except I am now fighting with a rheumatologist who is trying to say I dont have Lupus, because of course, ana negative, nothing shows, except that I have been suffering and trying to find a diagnosis for my symptoms , every symptom of SLE from mouth nose ulcers to extreme knee pain arthritis in both. It hit me with the rash all over my chest, neck, arms and just extreme fatigue and flu for months. My next appt with the rheumi is this week.How how do I convince or do I even have to convince this dr I have Lupus! My biopsy was with the dermatologis before even seeing her. Any advice would be appreciated!

Oh and biopsy was positive for tumid lupus.

@ddfinn

It’s like you are writing my story except I am now fighting with a rheumatologist who is trying to say I dont have Lupus, because of course, ana negative, nothing shows, except that I have been suffering and trying to find a diagnosis for my symptoms , every symptom of SLE from mouth nose ulcers to extreme knee pain arthritis in both. It hit me with the rash all over my chest, neck, arms and just extreme fatigue and flu for months. My next appt with the rheumi is this week.How how do I convince or do I even have to convince this dr I have Lupus! My biopsy was with the dermatologis before even seeing her. Any advice would be appreciated!

Jump to this post

@ddfinn – I’m just joining in on this chat and I don’t have time to read all the previous posts so please forgive me if I’m repeating things or come across as ignorant (because I am regarding your situation). It sounds like it might be worth getting a second opinion from another rheumatologist, maybe from a teaching hospital if there is one close by to you. I know I could have diagnosed my daughter with many forms of arthritis when she was younger but had to rely on the expertise of her physician who was used to seeing arthritis much more than I (obviously my daughter having issues starting at age 6 was my introduction). I would go to her appointments with a list of questions that basically questioned her diagnosis and she very calmly answered them all to my satisfaction. Sometimes I was dubious but time, or further research, usually indicated that she was right. If I was not content I certainly would have sought out a second opinion. It is my understanding that rheumatologists must rely more on patient history and examination vs. blood work to get their diagnosis. For example, my daughter was in such a flare that she was in a wheelchair but she never tested positive for an elevated c-reactive protein that is usually present when there is inflammation yet clearly her joints were swollen and her pain so extreme she was in a wheelchair.

Lynn

Welcome to Connect, @ddfinn. I can absolutely imagine your frustration with not getting any answers!

I’d like to introduce you to @seesawer @sandpiper09 @butterflygirl @whyus @regeanna @lisabeans @blindeyepug @piglit @larsona10 and Mentor @johnbishop; you can view their conversation, and shared experiences here:

Systemic lupus erythematosus (SLE) http://mayocl.in/2tdyqVK
Undiagnosed auto immune disease http://mayocl.in/2tG2wCy
Have a few autoimmune disorders – now have consistent low grade fever http://mayocl.in/2tmrbJG

I’d also like to invite @suzyp, who recently posted about a similar experience, to join this discussion

@ddfinn, has the rheumatologist given you an explanation as to what your symptoms could indicate, if not lupus? Are you currently taking any medication to get some relief?

Hello @ddfinn, I would also like to welcome you to Connect. Does your rheumatologist not trust the biopsy results for tumid lupus? I would be pressing them for an answer why and asking more questions. Is it possible to have your dermatologist talk with the rheumatologist? I agree with @lcamino about getting a second opinion if possible.

John

I would like some advice. I was diagnosed with Tumid lupus in 2010. I recently waited months to see a rheumatologist and when I finally got to see him he tells me that he would not believe my test results because they were not from a doctor IN Atlanta. Didn’t matter that the doctor who diagnosed me was in the most affluent area of North Atlanta and all his hospital and doctor associations ARE in Atlanta. It also did not matter that my test were run 3 times to make sure they had the right diagnosis. He also stated that there is no such thing as Tumid Lupus it is just a name some use, but that there is only SLE and Cutaneous types of lupus. Without any test or examination other that to ask me if I could bend my knees backwards and him taking a quick glance at the tops of my hands. He told me that my problem is called Degenerative Joint Disease and that I have some type of a painful skin problems. My treatment was the following: he would tell my primary doctor that I need to learn to sleep better using a website he suggested, to eat better and avoid anything that causes me pain and learn to alter doing what does cause me pain and do it another way. (I cannot walk or stand without pain) He will also suggest that my primary doctor run an ANA test but that it won’t diagnosis my “type” of lupus (I never was diagnosed that way) it was by biopsy. He also told me I need to learn to wear dark clothes from head to toe along with sunglasses and a hat if I have to go out in the sun. He also suggested I change to going outside from sundown to sunrise. He also gave me a study of the skin and body and how the sun and environment affect someone like me. I will be honest I can usually follow along pretty well with medical explanations, but other than a few words like, dna, enzymes, etc I had no idea what he was talking about. He then handed me a card and told me if I ever needed him to make an appointment other than that he was just going to send his recommendations for follow up care to my primary doctor. He then handed me a visit slip and said it was nice to meet me and he went to his next patient. He never asked what I do to control my symptoms, what test I have and haven’t had he never really asked me any real questions he mainly just talked and lectured. I am at a loss as to what to think and do. I’m wondering do I just wait until my hair all falls out (my newest problem) or do I continue to look for answers? And most of all is Tumid lupus the same as Cutaneous Lupus?

Hello @sandpiper09, I am sorry you are in so much pain and getting very little help, empathy or understanding from your rheumatologist. I am not a medical professional and have no medical training but if possible I would try to get a second opinion. You know better than the rheumatologist what is happening to your body – you may not know why, but you can feel the pain, you know where it hurts and it’s up to the doctors to come up with the diagnosis and treatment.

From what I understand from a quick search, there are many different types of Lupus. Here is further information on the types of lupus from Johns Hopkins

http://www.hopkinslupus.org/lupus-info/types-lupus/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

@sandpiper09

I would like some advice. I was diagnosed with Tumid lupus in 2010. I recently waited months to see a rheumatologist and when I finally got to see him he tells me that he would not believe my test results because they were not from a doctor IN Atlanta. Didn’t matter that the doctor who diagnosed me was in the most affluent area of North Atlanta and all his hospital and doctor associations ARE in Atlanta. It also did not matter that my test were run 3 times to make sure they had the right diagnosis. He also stated that there is no such thing as Tumid Lupus it is just a name some use, but that there is only SLE and Cutaneous types of lupus. Without any test or examination other that to ask me if I could bend my knees backwards and him taking a quick glance at the tops of my hands. He told me that my problem is called Degenerative Joint Disease and that I have some type of a painful skin problems. My treatment was the following: he would tell my primary doctor that I need to learn to sleep better using a website he suggested, to eat better and avoid anything that causes me pain and learn to alter doing what does cause me pain and do it another way. (I cannot walk or stand without pain) He will also suggest that my primary doctor run an ANA test but that it won’t diagnosis my “type” of lupus (I never was diagnosed that way) it was by biopsy. He also told me I need to learn to wear dark clothes from head to toe along with sunglasses and a hat if I have to go out in the sun. He also suggested I change to going outside from sundown to sunrise. He also gave me a study of the skin and body and how the sun and environment affect someone like me. I will be honest I can usually follow along pretty well with medical explanations, but other than a few words like, dna, enzymes, etc I had no idea what he was talking about. He then handed me a card and told me if I ever needed him to make an appointment other than that he was just going to send his recommendations for follow up care to my primary doctor. He then handed me a visit slip and said it was nice to meet me and he went to his next patient. He never asked what I do to control my symptoms, what test I have and haven’t had he never really asked me any real questions he mainly just talked and lectured. I am at a loss as to what to think and do. I’m wondering do I just wait until my hair all falls out (my newest problem) or do I continue to look for answers? And most of all is Tumid lupus the same as Cutaneous Lupus?

Jump to this post

@sandpiper09, I have several autoimmune diseases – the latest of which to be diagnosed is Lupus. (I also have RA and Sjogren’s). Run to another doctor! I had to go to several doctors before getting my initial diagnosis of Fibromyalgia and then Rheumatoid Arthritis. The doctor you mention sounds like a quack. Is he an MD or an OD? There is a BIG difference. Why can you not see the other doctor who diagnosed you with Lupus? Is the other doctor you went to recommended by him? Yes, the sun will affect you – especially with Lupus. Even some of the medication taken to help treat it give you sun sensitivity. I am on methotrexate which actually works on all three of my autoimmune disorders. Once you get to the right doctor, you will feel hope and find relief. I would not take pain pills if you can help it except for really bad flares. The more pain meds you take, the more you need and the greater the pain seems to be without them. Walking and swimming are great exercises to help with pain. You just have to learn to pace yourself. I find sleeping on a Thermapedic mattress helps. There are bunches of great ideas on these boards which you can try. Some may work for you and others may not. It can be quite the experiment to find what helps you. Once you find it, stick to it. Do your best to keep moving. Resting is important, but resting too much actually causes more pain – makes you stiffer. It is a “dance” between rest and movement that you will learn and it will help. Keeping you in my prayers.

Please login or register to post a reply.