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!

@johnbishop

Hello @ejlm, Welcome to Connect. I know you must be terribly frustrated trying to figure out what's causing your symptoms. From what I have read, one of the symptoms of Lupus is the butterfly rash across the face.

Mayo Clinic – Lupus Symptoms & Causes: https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789

PubMed also has some information that you may find helpful here: The Butterfly Rash and the Malar Flush. What Diseases Do These Signs Reflect?
https://pubmed.ncbi.nlm.nih.gov/1824645-the-butterfly-rash-and-the-malar-flush-what-diseases-do-these-signs-reflect/

I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Autoimmune Diseases > Tumid Lupus with SLE Symptoms?
https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/

@ejlm have you thought about getting a second opinion at a major teaching hospital or Mayo Clinic? If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Jump to this post

Thank you John for the suggestions:) I have thought about the Rochester mayo but have not looked into what I would need to do to be seen there.

REPLY

Hi,
I guess I will start from what I know
First I was a very healthy kid. I have had a lot of ongoing stressors, but healthy. I will try to put stress in some sort of light. Trauma stresses of murder of a close one, molestation with crazy mind games and physical abuse. 3 rapes, abusive relationship in high school. Then another. Young pregnancy which I was abused during and went into early labor. Went toxic after a beating and was induced. Three more pregnancies all with pre eclampsia. Extreme abuse in the home and was eventually left homeless and a childcare provider suffocated my son. Went from all that to single mother of four little kids trying to go to college….ended up joining the military was released due to unknown medical issues (will swing back to that). Married again, very tragic end to that. Married again was working long hours found out person was abusing my kids and snorting cocaine. Now I am married again and we have had some very big downs. Son ended up in crazy treatment, so much court, husband is now in rehab for alcoholism. Really it never flipping stops. Quit my job trying to deal with all of this and having flare up after flare up of who the heck knows what.
Ok keys here for medical.
During pregnancies I was put on thyroid meds for the fourth one. Small dose and never followed up on it.
In the military I was top notch. Had a 4.26 minute mile, weighed 118 lbs. 104 situps in a minute, they called me superstar and not in a bad way. I had extremely high scores across the board and felt amazing.
Then all of a sudden I could not hold any vitamin D or iron. I looked like I was gang raped by a group of linemen. Girls who had to shower with me left in tears. I was a walking bruise…..deep awful bruises. It was grotesque looking. My abdomen, inner thighs, legs, back, breasts, arms. Everything was a bruise. I couldn't stand or sit, I would just fall over. Writing in class would become eligible and would fall off my chair.
Fast forward, took a discharge but no one really could figure it out. Eventually I began really struggling with my weight and I was running miles a day and eating a bowl of cream of wheat. I was drop dead tired all the time and was always a wreck. Eventually a doctor tested my thyroid levels. Cant remember what they were but was put on a dose of 250. Not 25, 250. When I picked it up from the pharmacy he looked at me like I was insane. Tested positive for hashimotos and the story of silly bull has continued.
I started developing these weird bruises on my legs. They started as a deep insane itch and would turn into months long itchy bruises.
Always fighting swelling.
I have a huge butterfly rash across my face that becomes very prominent during times of stress or flare ups.
I get crazy joint pain that makes no sense.
My hands sometimes just stop working and I drop things.
This summer the bottoms of my feet just went crazy. My doctor called them lupus feet and sent me to an endo that basically laughed me out of the room and said it's just your hashimoto's. All of a sudden fibromyalgia showed up on my chart? Mmmmk. I did nothing and my feet swelled like balloons. I think I stepped on an acorn, not sure. Today I closed a door and half my hand blew up. Like painful awful hell. I shut a door, that was it. I have been super stressed and I know I have been having a lot of crazy fatigue and joint issues but this was flat out all the tissue in my hand became hard and huge and painful. Not thumb, just the four fingers and top of my palm. Now I am getting the swelling down and I have a weird bruising that is all washed/spread out and now my palms have dots that have an insanely deep itch like what I get on my legs and what happened to my feet over the summer. Other than that just sheer fatigue. Especially in my shoulders and arms.
I understand stress causes flare ups but I cant find anything that says this is a hashimoto's type flare. I am tired of fighting with it.
My weight is blah and I have been amazingly infertile since my last child. Not complaining but always found it strange. Also doctors have always said the same thing to me. If you dont want any more children why do you care….well for someone who had four pregnancies between 98 and 04 just seems a little strange to go from Being laughed at for being overly fertile to not fertile at all.
Only other thing is at 39 I have been told I am most possibly in early onset menopause. Just keeps getting better.
Other randoms I now have migraines…I had a clean scan a year and a half ago, then I was scanned again about a half year ago for continuing migraines and a mass that had developed in my face. They said it was a weird cluster (I call it weird) of veins that have bunched together near my jaw? I thought it may have been the cause of migraines but they said no, just a thing that happens.
I do not mean to sound crabby….lol. my sarcasm can be a little off putting, but I really just want to get to a good place and not sure how when I dont know what I am up against.

REPLY

Hi @ejlm you may have noticed I moved your post to this existing discussion per @johnbishop's suggestion so that you can connect with others who have similar experience, specifically with lupus. Simply click VIEW & REPLY in your email notification to get to your post.

@lexonpark @pennyjo33, @lanakaymedina, @jessicanpayne and @seesawer all have experience with lupus and may be able to offer you support or share their experience.

Have you been given any treatment for these additional symptoms? You mentioned you were taking something for thyroid what is the name of that medication?

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@ejlm

Thank you John for the suggestions:) I have thought about the Rochester mayo but have not looked into what I would need to do to be seen there.

Jump to this post

@ejlm, I think Rochester Mayo Clinic Campus would be a great choice. Are you able to ask your doctor for a referral? I'm not sure you need one but it may be helpful if they can send your medical records ahead. You can also call for an appointment yourself. If you need any Rochester or Mayo Clinic visit related information, please tag me (@johnbishop) and I will see if I can help you. I've lived in the area a long time and am a Rochester Mayo Clinic patient.

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I take levothyroxine currently. I recently ordered some vitamins for adrenal support and something called hashiscript. But I have not taken them regularly. I read something about prolonged stress and adrenal fatigue. Not sure if it's a thing but at this point worth a try

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@johnbishop You are such a good helper I appreciate you Linda

REPLY
@ejlm

Hi,
I guess I will start from what I know
First I was a very healthy kid. I have had a lot of ongoing stressors, but healthy. I will try to put stress in some sort of light. Trauma stresses of murder of a close one, molestation with crazy mind games and physical abuse. 3 rapes, abusive relationship in high school. Then another. Young pregnancy which I was abused during and went into early labor. Went toxic after a beating and was induced. Three more pregnancies all with pre eclampsia. Extreme abuse in the home and was eventually left homeless and a childcare provider suffocated my son. Went from all that to single mother of four little kids trying to go to college….ended up joining the military was released due to unknown medical issues (will swing back to that). Married again, very tragic end to that. Married again was working long hours found out person was abusing my kids and snorting cocaine. Now I am married again and we have had some very big downs. Son ended up in crazy treatment, so much court, husband is now in rehab for alcoholism. Really it never flipping stops. Quit my job trying to deal with all of this and having flare up after flare up of who the heck knows what.
Ok keys here for medical.
During pregnancies I was put on thyroid meds for the fourth one. Small dose and never followed up on it.
In the military I was top notch. Had a 4.26 minute mile, weighed 118 lbs. 104 situps in a minute, they called me superstar and not in a bad way. I had extremely high scores across the board and felt amazing.
Then all of a sudden I could not hold any vitamin D or iron. I looked like I was gang raped by a group of linemen. Girls who had to shower with me left in tears. I was a walking bruise…..deep awful bruises. It was grotesque looking. My abdomen, inner thighs, legs, back, breasts, arms. Everything was a bruise. I couldn't stand or sit, I would just fall over. Writing in class would become eligible and would fall off my chair.
Fast forward, took a discharge but no one really could figure it out. Eventually I began really struggling with my weight and I was running miles a day and eating a bowl of cream of wheat. I was drop dead tired all the time and was always a wreck. Eventually a doctor tested my thyroid levels. Cant remember what they were but was put on a dose of 250. Not 25, 250. When I picked it up from the pharmacy he looked at me like I was insane. Tested positive for hashimotos and the story of silly bull has continued.
I started developing these weird bruises on my legs. They started as a deep insane itch and would turn into months long itchy bruises.
Always fighting swelling.
I have a huge butterfly rash across my face that becomes very prominent during times of stress or flare ups.
I get crazy joint pain that makes no sense.
My hands sometimes just stop working and I drop things.
This summer the bottoms of my feet just went crazy. My doctor called them lupus feet and sent me to an endo that basically laughed me out of the room and said it's just your hashimoto's. All of a sudden fibromyalgia showed up on my chart? Mmmmk. I did nothing and my feet swelled like balloons. I think I stepped on an acorn, not sure. Today I closed a door and half my hand blew up. Like painful awful hell. I shut a door, that was it. I have been super stressed and I know I have been having a lot of crazy fatigue and joint issues but this was flat out all the tissue in my hand became hard and huge and painful. Not thumb, just the four fingers and top of my palm. Now I am getting the swelling down and I have a weird bruising that is all washed/spread out and now my palms have dots that have an insanely deep itch like what I get on my legs and what happened to my feet over the summer. Other than that just sheer fatigue. Especially in my shoulders and arms.
I understand stress causes flare ups but I cant find anything that says this is a hashimoto's type flare. I am tired of fighting with it.
My weight is blah and I have been amazingly infertile since my last child. Not complaining but always found it strange. Also doctors have always said the same thing to me. If you dont want any more children why do you care….well for someone who had four pregnancies between 98 and 04 just seems a little strange to go from Being laughed at for being overly fertile to not fertile at all.
Only other thing is at 39 I have been told I am most possibly in early onset menopause. Just keeps getting better.
Other randoms I now have migraines…I had a clean scan a year and a half ago, then I was scanned again about a half year ago for continuing migraines and a mass that had developed in my face. They said it was a weird cluster (I call it weird) of veins that have bunched together near my jaw? I thought it may have been the cause of migraines but they said no, just a thing that happens.
I do not mean to sound crabby….lol. my sarcasm can be a little off putting, but I really just want to get to a good place and not sure how when I dont know what I am up against.

Jump to this post

@ejlm Welcome to Mayo Connect. @johnbishop is correct, if you can get in to Mayo Clinic, it would be helpful. As you have posted here, I would add the following. Write down your timeline, with the pregnancies, and physical issues you have endured. All medications/ treatments/diagnoses. Did you ever keep a log or journal of when symptoms would appear [after eating something, or after activity, or correlating to other stressors going on at that time for example]. Any information you can provide beyond bloodwork results, will help to narrow things down. Being part of the medical journey and giving as much info as possible, helps you to feel in control of the situation, and being part of the team that includes your medical specialists. You may also benefit from the help of a counselor as you navigate through all this, for your mental health well-being.
Ginger

REPLY
@lioness

@johnbishop You are such a good helper I appreciate you Linda

Jump to this post

Thanks Linda! I appreciate all of the help you provide also.

REPLY
@ejlm

Hi,
I guess I will start from what I know
First I was a very healthy kid. I have had a lot of ongoing stressors, but healthy. I will try to put stress in some sort of light. Trauma stresses of murder of a close one, molestation with crazy mind games and physical abuse. 3 rapes, abusive relationship in high school. Then another. Young pregnancy which I was abused during and went into early labor. Went toxic after a beating and was induced. Three more pregnancies all with pre eclampsia. Extreme abuse in the home and was eventually left homeless and a childcare provider suffocated my son. Went from all that to single mother of four little kids trying to go to college….ended up joining the military was released due to unknown medical issues (will swing back to that). Married again, very tragic end to that. Married again was working long hours found out person was abusing my kids and snorting cocaine. Now I am married again and we have had some very big downs. Son ended up in crazy treatment, so much court, husband is now in rehab for alcoholism. Really it never flipping stops. Quit my job trying to deal with all of this and having flare up after flare up of who the heck knows what.
Ok keys here for medical.
During pregnancies I was put on thyroid meds for the fourth one. Small dose and never followed up on it.
In the military I was top notch. Had a 4.26 minute mile, weighed 118 lbs. 104 situps in a minute, they called me superstar and not in a bad way. I had extremely high scores across the board and felt amazing.
Then all of a sudden I could not hold any vitamin D or iron. I looked like I was gang raped by a group of linemen. Girls who had to shower with me left in tears. I was a walking bruise…..deep awful bruises. It was grotesque looking. My abdomen, inner thighs, legs, back, breasts, arms. Everything was a bruise. I couldn't stand or sit, I would just fall over. Writing in class would become eligible and would fall off my chair.
Fast forward, took a discharge but no one really could figure it out. Eventually I began really struggling with my weight and I was running miles a day and eating a bowl of cream of wheat. I was drop dead tired all the time and was always a wreck. Eventually a doctor tested my thyroid levels. Cant remember what they were but was put on a dose of 250. Not 25, 250. When I picked it up from the pharmacy he looked at me like I was insane. Tested positive for hashimotos and the story of silly bull has continued.
I started developing these weird bruises on my legs. They started as a deep insane itch and would turn into months long itchy bruises.
Always fighting swelling.
I have a huge butterfly rash across my face that becomes very prominent during times of stress or flare ups.
I get crazy joint pain that makes no sense.
My hands sometimes just stop working and I drop things.
This summer the bottoms of my feet just went crazy. My doctor called them lupus feet and sent me to an endo that basically laughed me out of the room and said it's just your hashimoto's. All of a sudden fibromyalgia showed up on my chart? Mmmmk. I did nothing and my feet swelled like balloons. I think I stepped on an acorn, not sure. Today I closed a door and half my hand blew up. Like painful awful hell. I shut a door, that was it. I have been super stressed and I know I have been having a lot of crazy fatigue and joint issues but this was flat out all the tissue in my hand became hard and huge and painful. Not thumb, just the four fingers and top of my palm. Now I am getting the swelling down and I have a weird bruising that is all washed/spread out and now my palms have dots that have an insanely deep itch like what I get on my legs and what happened to my feet over the summer. Other than that just sheer fatigue. Especially in my shoulders and arms.
I understand stress causes flare ups but I cant find anything that says this is a hashimoto's type flare. I am tired of fighting with it.
My weight is blah and I have been amazingly infertile since my last child. Not complaining but always found it strange. Also doctors have always said the same thing to me. If you dont want any more children why do you care….well for someone who had four pregnancies between 98 and 04 just seems a little strange to go from Being laughed at for being overly fertile to not fertile at all.
Only other thing is at 39 I have been told I am most possibly in early onset menopause. Just keeps getting better.
Other randoms I now have migraines…I had a clean scan a year and a half ago, then I was scanned again about a half year ago for continuing migraines and a mass that had developed in my face. They said it was a weird cluster (I call it weird) of veins that have bunched together near my jaw? I thought it may have been the cause of migraines but they said no, just a thing that happens.
I do not mean to sound crabby….lol. my sarcasm can be a little off putting, but I really just want to get to a good place and not sure how when I dont know what I am up against.

Jump to this post

Hello @ejlm You have been dealing with so much! Have your doctors suggested seeing a rheumatologist? Many times they can put all these vague symptoms together and come up with a diagnosis. But, how about you? Are you able to cope on a daily basis? Are your children still at home? You also say that stress causes flare ups—do you currently have a lot of stress? Too many questions! I’m sorry! Please stay in touch with us!

REPLY
@gingerw

@ejlm Welcome to Mayo Connect. @johnbishop is correct, if you can get in to Mayo Clinic, it would be helpful. As you have posted here, I would add the following. Write down your timeline, with the pregnancies, and physical issues you have endured. All medications/ treatments/diagnoses. Did you ever keep a log or journal of when symptoms would appear [after eating something, or after activity, or correlating to other stressors going on at that time for example]. Any information you can provide beyond bloodwork results, will help to narrow things down. Being part of the medical journey and giving as much info as possible, helps you to feel in control of the situation, and being part of the team that includes your medical specialists. You may also benefit from the help of a counselor as you navigate through all this, for your mental health well-being.
Ginger

Jump to this post

For the most part most issues show after times of prolonged stress. I wish I could say I have journaled but I have not. I pretty well count on being able to look back at texts I have sent my unt who is an RN and my medical files. Past that I very rarely have had time to sit and write anything down:(. Therapy at the moment is not an option with my husband in treatment and a farm to keep up with and a small business starting. I do not think going back to work is an option at this time.

REPLY
@becsbuddy

Hello @ejlm You have been dealing with so much! Have your doctors suggested seeing a rheumatologist? Many times they can put all these vague symptoms together and come up with a diagnosis. But, how about you? Are you able to cope on a daily basis? Are your children still at home? You also say that stress causes flare ups—do you currently have a lot of stress? Too many questions! I’m sorry! Please stay in touch with us!

Jump to this post

My brain, that's who I saw, a rheumatologist, endo is who I saw for the hashimoto's diagnosis. I have a hard time with words and recal sometimes.

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@johnbishop

@ejlm, I think Rochester Mayo Clinic Campus would be a great choice. Are you able to ask your doctor for a referral? I'm not sure you need one but it may be helpful if they can send your medical records ahead. You can also call for an appointment yourself. If you need any Rochester or Mayo Clinic visit related information, please tag me (@johnbishop) and I will see if I can help you. I've lived in the area a long time and am a Rochester Mayo Clinic patient.

Jump to this post

Thank you John, I do truely appreciate that. Today the swelling is out of my hand, which is wonderful still a lot of muscle fatigue but thankfully I just let my hands be yesterday. When it happened in my feet that is a bit harder and took longer to heal….its like any impact at all and it just goes crazy. Thank goodness my kids are older and past the Lego stage…lol

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The only other helpful anything is that it seems my thyroid levels refuse to stabilize. I am constantly jumping between dosages of 137 and 150. I was diagnosed in 2008, so 12 years now of thyroid medications consistently. 125 has been my lowest dose and 250 my highest over these 12 years. Right now my face rash is very pronounced, once stress comes down it will fade a little and the deep purple centers will go away.

REPLY
@ejlm

Hi,
I guess I will start from what I know
First I was a very healthy kid. I have had a lot of ongoing stressors, but healthy. I will try to put stress in some sort of light. Trauma stresses of murder of a close one, molestation with crazy mind games and physical abuse. 3 rapes, abusive relationship in high school. Then another. Young pregnancy which I was abused during and went into early labor. Went toxic after a beating and was induced. Three more pregnancies all with pre eclampsia. Extreme abuse in the home and was eventually left homeless and a childcare provider suffocated my son. Went from all that to single mother of four little kids trying to go to college….ended up joining the military was released due to unknown medical issues (will swing back to that). Married again, very tragic end to that. Married again was working long hours found out person was abusing my kids and snorting cocaine. Now I am married again and we have had some very big downs. Son ended up in crazy treatment, so much court, husband is now in rehab for alcoholism. Really it never flipping stops. Quit my job trying to deal with all of this and having flare up after flare up of who the heck knows what.
Ok keys here for medical.
During pregnancies I was put on thyroid meds for the fourth one. Small dose and never followed up on it.
In the military I was top notch. Had a 4.26 minute mile, weighed 118 lbs. 104 situps in a minute, they called me superstar and not in a bad way. I had extremely high scores across the board and felt amazing.
Then all of a sudden I could not hold any vitamin D or iron. I looked like I was gang raped by a group of linemen. Girls who had to shower with me left in tears. I was a walking bruise…..deep awful bruises. It was grotesque looking. My abdomen, inner thighs, legs, back, breasts, arms. Everything was a bruise. I couldn't stand or sit, I would just fall over. Writing in class would become eligible and would fall off my chair.
Fast forward, took a discharge but no one really could figure it out. Eventually I began really struggling with my weight and I was running miles a day and eating a bowl of cream of wheat. I was drop dead tired all the time and was always a wreck. Eventually a doctor tested my thyroid levels. Cant remember what they were but was put on a dose of 250. Not 25, 250. When I picked it up from the pharmacy he looked at me like I was insane. Tested positive for hashimotos and the story of silly bull has continued.
I started developing these weird bruises on my legs. They started as a deep insane itch and would turn into months long itchy bruises.
Always fighting swelling.
I have a huge butterfly rash across my face that becomes very prominent during times of stress or flare ups.
I get crazy joint pain that makes no sense.
My hands sometimes just stop working and I drop things.
This summer the bottoms of my feet just went crazy. My doctor called them lupus feet and sent me to an endo that basically laughed me out of the room and said it's just your hashimoto's. All of a sudden fibromyalgia showed up on my chart? Mmmmk. I did nothing and my feet swelled like balloons. I think I stepped on an acorn, not sure. Today I closed a door and half my hand blew up. Like painful awful hell. I shut a door, that was it. I have been super stressed and I know I have been having a lot of crazy fatigue and joint issues but this was flat out all the tissue in my hand became hard and huge and painful. Not thumb, just the four fingers and top of my palm. Now I am getting the swelling down and I have a weird bruising that is all washed/spread out and now my palms have dots that have an insanely deep itch like what I get on my legs and what happened to my feet over the summer. Other than that just sheer fatigue. Especially in my shoulders and arms.
I understand stress causes flare ups but I cant find anything that says this is a hashimoto's type flare. I am tired of fighting with it.
My weight is blah and I have been amazingly infertile since my last child. Not complaining but always found it strange. Also doctors have always said the same thing to me. If you dont want any more children why do you care….well for someone who had four pregnancies between 98 and 04 just seems a little strange to go from Being laughed at for being overly fertile to not fertile at all.
Only other thing is at 39 I have been told I am most possibly in early onset menopause. Just keeps getting better.
Other randoms I now have migraines…I had a clean scan a year and a half ago, then I was scanned again about a half year ago for continuing migraines and a mass that had developed in my face. They said it was a weird cluster (I call it weird) of veins that have bunched together near my jaw? I thought it may have been the cause of migraines but they said no, just a thing that happens.
I do not mean to sound crabby….lol. my sarcasm can be a little off putting, but I really just want to get to a good place and not sure how when I dont know what I am up against.

Jump to this post

@ejlm
Hello, again. From what you have described, you could very well be in early menopause. You might think about seeing a gynecologist to see what treatment they can offer. Menopause is always a difficult time for women. If you can deal with those symptoms, it might make everything else more manageable. Find a female gynecologist, if you can. Does this sound like a good place to start?

REPLY
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