Tumid Lupus

Posted by paulamiddleton @paulamiddleton, Oct 10, 2016

I have been diagnosed with Tumid Lupus which is a rare form of Lupus and only affects the skin but my symptoms fall outside the norm..Looking for
someone else with this condition and their symptoms and medications?? Need additional answers no one can seem to provide me

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Hello @thestruggleisreal,

Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!

I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888

@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?

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My friends and family rarely remember how hard day to day life is for me. It can be very isolating and very hard not to push everything inside yourself. I try very hard to have patience and just remind them I cannot do that or I need to rest. My parents are getting much better. I have stopped talking to my friends about it. I also am so happy everyday that mine is not systemic as well. I cannot imagine going through any more.

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@kanaazpereira

Hello @thestruggleisreal,

Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!

I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888

@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?

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I am on medication – Plaquenil, and every 6 months I have to have a special eye exam. I take some other meds so that I can be comfortable when trying to sleep. As far as heat, that is a tough one. Just a couple of days ago, I was seated outside in the shade, but the sun did come through the trees a couple of times, and that is all it took for me to be bedridden and in pain the following day. I try to not get overheated because that makes me have a bad reaction.

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@kanaazpereira

Hello @thestruggleisreal,

Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!

I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888

@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?

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I also take Plaquenil and at night I sleep on “Chillow Pillows” which I love and keeps me cool at night. I do have a curiosity questions.., you spoke of getting just a touch of sun and it making you bedridden. Is it just pain or a physical sickness. The reason I ask is I can be exposed to the sun and while it will make me hot in a different way than others and I will probably get red splotches on my skin, these will disappear when I get out of the sun but I do not get sick so I am trying to understand your symptoms.. Thanks

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@kanaazpereira

Hello @thestruggleisreal,

Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!

I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888

@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?

Jump to this post

By the way I am also very sensitive to fluorescent lighting and have to work with my office light off and use a small lamp instead

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Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.

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@lakelife1

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.

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I have lupus, but haven't heard of Tumid lupus. I was on plaquenil for years and was taken off gradually, along with cell cept. They both affect the liver and or kidneys. I do limit my time in the sun, but it is very doable. Will have to do research on your type of the illness. Wishing you well!

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@lakelife1

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.

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I too have Tumid Lupus and what I’ve found out is that it’s so rare that most Dr’s don’t know enough… I take Plaquenil which helps and I also take Lyrica which was an experiment but it does help. Unfortunately I have symptoms that fall outside the “box” and so far I have found no answers for them and neither has my Dr. I am extremely sensitive to floresent lighting so I work with my office light off and use a small lamp.
If you find out any interesting information about Tumid Lupus please share as I am always looking for new information.. THANKS

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@paulamiddleton and others — I don't have Tumid Lupus but I ran across a link that may provide some helpful information on Tumid Lupus.

Lupus Tumid | List of High Impact Articles | PPts | Journals | Videos
https://www.omicsonline.org/scholarly/lupus-tumid-journals-articles-ppts-list.php

John

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Hello! I have been on Plaquenil for about 14 years. I never thought it helped until I ran out and couldn't get a hold of my dermatologist. I always have plaques on my face, neck, upper chest and arms but it is much better with the Plaquenil. It also helps with the chronic pain. Right now I am also taking Cellcept with hopes it will decrease my SED rate to normal levels. The plaques are bright red and very itchy. I wear sunscreen all the time and stay out of the sun. It is worse in the summer due to the higher temps. If your doctor suggests Plaquenil I would use it. It has definitely helped me.

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@lakelife1

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.

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Hi! I have tumid lupus as well, diagnosed by dermatologist biopsy. Went to the Duke Lupus Center who did tons of blood work just to send me home and say I don't have Lupus bc low ANA. Very frustrating that even a "Lupus center " doesn't know about tumid lupus. I have the rash, terrible joint pain, aches all over, and fatigue.

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@lakelife1

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.

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Well you need to be your own advocate.

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