Tumid Lupus with SLE Symptoms?

Posted by seesawer @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!

Interested in more discussions like this? Go to the Autoimmune Diseases group.

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?

REPLY

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

REPLY
@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.

REPLY
@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 – My philosophy has always been that if you do not have confidence in your doctor than you will not do well so I highly recommend you go to another doctor, at a teaching hospital or one of the Mayo Clinics, would be ideal.

Lynn

REPLY
@johnbishop

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

Jump to this post

@sandpiper09 – If the Mayo Clinic is not an option I would see if a teaching hospital is close by and covered by your insurance. They typically have a wide range of specialists who work together which is very beneficial for a diagnosis and treatment.

Lynn

REPLY
@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

My problem is that I moved from Atlanta where I had been diagnosed and treated until I moved to Florida. I live in a small tourist town with few doctors that specialize in this type of Lupus. The only one locally doesn’t take my insurances and I am not able to cover the uncovered expenses so I am back to looking for someone once again. I am so happy to have found this site. It has been wonderful to find others who has the same symptoms or even understands what it is like to be dealing with this rare form of Lupus. It seems that each of you all also have multiple other serious health conditions that you are also dealing with. The pain, the fatigue, the skin issues, the headaches, etc, etc. It finally seems to me that there are some common denominators we all share and leaves me hopeful our stories will help find answers about this disease. Yes, I do agree with the theory of staying away from pain meds, but this has been a 40 year battle for me and to just be able to walk I have no other options left anymore. I have been told my only other option would be a Spinal Cord Stimulator and I may have waited to long and don’t know where I would find a doctor like I had in Atlanta. But, yes regardless of the symptoms we do have to keep moving. I am also going to look into contacting the Florida Mayo Clinic to see if they can help. Please take care everyone and stay strong and please keep sharing, you don’t know just who you might be helping!

REPLY
@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 know it can be expensive but sometimes, with unusual conditions, driving long distances (or flying) is necessary to get the help you need. I have been driving my two daughters 2 hours (on a good day with no snow, construction, commute traffic) to the nearest pediatric hospital in the state for the past 13 years. Sometimes we went monthly. It is tiring but sometimes it is the only way to get answers. I sure hope you are able to get into the Florida Mayo Clinc soon. I suggest calling and speaking with someone instead of setting up an appointment online. Also, if you can get your records from the doctor in Atlanta that would be helpful to have them for your first appointment, if not ahead of time. Just make sure you keep a copy for yourself so they don’t get misplaced.

Lynn

REPLY

I got diagnosed with Tumid Lupus about a year ago, my docs haven’t tried any meds, and for about the last 3 weeks the rash has gotten really really bad again, I’ve been just dead tired, nothing i do gives me energy. I’m the 4th genaration to have Lupus, and that scares me cuz where it hasnt skipped a genration in 4 i worry my babies will get this darn disease. Anyways I’ve just got a question what do ya’ll do the help with the tired feeling, r there meds out that help also.

REPLY

@sweetpea8458 – I know someone who has AS (ankylosing spondylitis) not Lupus so my experience is only with AS. She definitely needs more sleep than her peers but her fatigue is worse when her disease is not under control (i.e. a lot of joint pain). I can only assume that your rash is an indication that your Lupus is not under control so PERHAPS if it was treated with meds to get it under control your fatigue would improve. That is how it is with AS which is also an autoimmune disease. I would encourage you to ask questions along these lines including why they have chosen not to give you any meds thus far. If you are not happy with the responses you might want to consider getting a second opinion. It is my understanding that most people with Lupus take medication regularly to avoid the flares (i.e. rash and joint pain) vs. medicating once the symptoms start. Most biologics need to be in your system for at least a month to see results unless high doses of prednisone are used. Remember, I AM NOT A DOCTOR, but am simply sharing the experiences of this person’s arthritis to help you start a conversation with your rheumatologist.

Best of luck and don’t be shy about advocating for yourself!

Lynn

REPLY
@sweetpea8458

I got diagnosed with Tumid Lupus about a year ago, my docs haven’t tried any meds, and for about the last 3 weeks the rash has gotten really really bad again, I’ve been just dead tired, nothing i do gives me energy. I’m the 4th genaration to have Lupus, and that scares me cuz where it hasnt skipped a genration in 4 i worry my babies will get this darn disease. Anyways I’ve just got a question what do ya’ll do the help with the tired feeling, r there meds out that help also.

Jump to this post

I also have Tumid Lupus and I take the drug Plaquenil which is what is commonly given for this type of Lupus. I don’t understand why your Dr wouldn’t give u anything that makes no sense to me. –
As far as fatigue I really don’t experience that a lot but if your diagnosis is Tumid Lupus I would defy ask my Dr about Plaquenil

REPLY
@sweetpea8458

I got diagnosed with Tumid Lupus about a year ago, my docs haven’t tried any meds, and for about the last 3 weeks the rash has gotten really really bad again, I’ve been just dead tired, nothing i do gives me energy. I’m the 4th genaration to have Lupus, and that scares me cuz where it hasnt skipped a genration in 4 i worry my babies will get this darn disease. Anyways I’ve just got a question what do ya’ll do the help with the tired feeling, r there meds out that help also.

Jump to this post

Welcome to Connect @sweetpea8458,
Fatigue can be so debilitating! @lcamino @paulamiddleton have shared some valuable information; thank you.
I’d also encourage you to view this discussion on Connect:
Tumid Lupus https://connect.mayoclinic.org/discussion/tumid-lupus/, where you’ll meet fellow members @sandpiper09 @WendyAnne @jazzyuk51 @mnkennedy @tyoark @cammieb95 @thestruggleisreal. They have shared their experiences with various forms of Lupus, and I’m sure they will return with some more insight for you.

@whyus @regeanna @butterflygirl, do you have any thoughts or suggestions as to how @sweetpea8458 can manage the fatigue?

Sweetpea8458, has your doctor suggested anything? Does this feeling of being tired last throughout the day?

REPLY
@sweetpea8458

I got diagnosed with Tumid Lupus about a year ago, my docs haven’t tried any meds, and for about the last 3 weeks the rash has gotten really really bad again, I’ve been just dead tired, nothing i do gives me energy. I’m the 4th genaration to have Lupus, and that scares me cuz where it hasnt skipped a genration in 4 i worry my babies will get this darn disease. Anyways I’ve just got a question what do ya’ll do the help with the tired feeling, r there meds out that help also.

Jump to this post

Hi @sweetpea8458. I’m searching for info on Tumid lupus and inflammation and found this discussion. I’ve had Tumid lupus for 12 or so years. I have found that emu oil helps with rash. I use a brand that I buy on eBay. I don’t take any prescription meds. Just spf 50 sunscreen every day. I would suggest that you have your vitamin d level checked. Mine was really low causing pain and fatigue. I still fight fatigue every day but it has gotten better with vitamin d and calcium.

REPLY
Please sign in or register to post a reply.
  Request Appointment