1. < Autoimmune Diseases

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 Support Group.

whyus | @whyus | May 20, 2017
In reply to @whyus "About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as..." + (show)
@whyus

<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>

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John, thank you so very much! I will look forward with eagerness to hear from others.

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whyus | @whyus | May 20, 2017
In reply to @regeanna "Sorry to hear of your diagnosis , but that's the same way I feel! Hopefully the..." + (show)
@regeanna

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 .

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Maybe you and I can struggle Thur this together.

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Kelly, Alumna Mentor | @kdubois | May 23, 2017
In reply to @johnbishop "Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will..." + (show)
@johnbishop

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

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@whyus, I suffered from drug-induced lupus versus SLE, but one thing was for sure... I was incredibly tired but had a difficult time sleeping due to pain. I hope and pray you find relief soon.

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regeanna | @regeanna | May 23, 2017
In reply to @regeanna "Sorry to hear of your diagnosis , but that's the same way I feel! Hopefully the..." + (show)
@regeanna

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 .

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Yes, let's do that! I'm here for you and all luppies and autos!

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butterflygirl | @butterflygirl | May 24, 2017
In reply to @whyus "About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as..." + (show)
@whyus

<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>

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Hello @whyus i am really sorry for your diagnosis. I have been diagnosed with SLE, fibromyalgia, Hashimitos etc. I know exactly how you feel. However do not give up. We all are with you.
One thing i would like to mention is, keep working out. Even if it is just walking for 20 mins. Try to do it everyday even when fatigue works hard to put you down. Trust me, you will see a difference in a week itself. It won't take away the fatigue or pain but you will notice a spike in energy. And every single spike counts .
Warm hugs. Stay strong.

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1 reply
whyus | @whyus | May 25, 2017
In reply to @whyus "About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as..." + (show)
@whyus

<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>

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Butterfly girl, thank you so much. I can't express my excitement upon seeing a msg. You all have given me hope. Please stay in touch.
Gifs bkessinfs

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 25, 2017
In reply to @butterflygirl "Hello @whyus i am really sorry for your diagnosis. I have been diagnosed with SLE, fibromyalgia,..." + (show)
@butterflygirl

Hello @whyus i am really sorry for your diagnosis. I have been diagnosed with SLE, fibromyalgia, Hashimitos etc. I know exactly how you feel. However do not give up. We all are with you.
One thing i would like to mention is, keep working out. Even if it is just walking for 20 mins. Try to do it everyday even when fatigue works hard to put you down. Trust me, you will see a difference in a week itself. It won't take away the fatigue or pain but you will notice a spike in energy. And every single spike counts .
Warm hugs. Stay strong.

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Hello @butterflygirl,

Welcome to Connect. Thank you so much for joining, and I'm certain @whyus and other members in this discussion sincerely appreciate your suggestions.

We have other active conversations taking place in the Chronic Pain group that you might be interested in checking out:

Need some guidance and input!!! (Fibromyalgia): http://mayocl.in/2rYdwGC
Fibromyalgia Pain http://mayocl.in/2hgUGcv
Please feel free to scroll through the discussions, join in with questions and suggestions, and tag members as they have all posted about issues with fibromyalgia, pain management and medications.

@butterflygirl, would you be comfortable sharing a little more about yourself? When were you diagnosed with these conditions and how have you been coping thus far?

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tunkins1 | @tunkins1 | Jun 4, 2017
In reply to @whyus "About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as..." + (show)
@whyus

<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>

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I'm sorry I can't help. I suspect I have this. My dermatologist said I did, then the next Dr. told me I have auto immune disorder. I was tested for allergies. None. So why do my eyes swell? Why do I get hives? Aches & pains? I have given up. I was told to take allergy medication.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jun 7, 2017
In reply to @whyus "About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as..." + (show)
@whyus

<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>

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Hi @tunkins1,

Welcome to Connect; I'm so sorry to hear about your symptoms. Have you had a chance to check out this discussion about SLE as well:
Tumid Lupus with SLE Symptoms?: http://mayocl.in/2qJpF2Q

@tunkins1, when were you diagnosed? Would you share your insights as to how you have been coping thus far?

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regeanna | @regeanna | Jun 9, 2017
In reply to @regeanna "Sorry to hear of your diagnosis , but that's the same way I feel! Hopefully the..." + (show)
@regeanna

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 .

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Hello Whyus, hope this post finds you doing better! I had a lupus flare that was sever two weeks ago. Joint pain, muscle pain, pleurisy, fever, and sever stiffness. The Rheumatologist put me on Plaquenil so hopefully that will kick in, I stayed in prayer those days when the pain was severe, that helped me cope with it, James 4: 8. I hope you and all the other luppies continue to share your stories, it helps knowing we are not alone and can find comfort in one another. Please take care!
Regeanna

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