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

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

Well you need to be your own advocate.

REPLY
@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.

Jump to this post

That’s crazy.. from my understanding low ANA has nothing to do with Tumid Lupus.. My dermatologist prescribed Plaquenil. Did your dermatologist prescribe any medication??

REPLY
@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.

Jump to this post

I swear, we know more about medicine than doctors.

Liked by lioness

REPLY
@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.

Jump to this post

I am so sick today. Unfortunately, I have problems with my medicine for RA. Methotrexate. But I must hang in there. Couple of weeks I will feel better. Where's my Marijuana

REPLY
@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.

Jump to this post

@oregongirl go to IRED.com They have a whole list of CBD and others maybe theres something there for you I have the cream it hols of the pain longer then otc.

REPLY
@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.

Jump to this post

Ok thanks

REPLY
@billjan

I have had tumid lupus for about 12 years. I have lived with the small red skin spots after not being able to find a treatment for the condition. My problem is that in the last two weeks my small red spots have turned into raised large red spots. They is more itch with these raised spots. Has anyone experienced this condition? I also have polymyalgia rheumatica for which I take 5 mg/day prednisone. Have tried to decrease to 4 mg/day but muscle aches return.

Jump to this post

Hi @billjan — There is another discussion by the same name where your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your dicussion here where you can meet others who are discussing tumid lupus.

> Groups > Autoimmune Diseases > Tumid Lupus
https://connect.mayoclinic.org/discussion/tumid-lupus/

Have you discussed the new symptoms with your doctor?

REPLY
@billjan

I have had tumid lupus for about 12 years. I have lived with the small red skin spots after not being able to find a treatment for the condition. My problem is that in the last two weeks my small red spots have turned into raised large red spots. They is more itch with these raised spots. Has anyone experienced this condition? I also have polymyalgia rheumatica for which I take 5 mg/day prednisone. Have tried to decrease to 4 mg/day but muscle aches return.

Jump to this post

Yes you an move to tumid lupus discussion. I have and appointment coming up with my primary care provider and will bring it up with her.

REPLY

I have had tumid lupus for about 12 years. I have lived with the small red skin spots after not being able to find a treatment for the condition. My problem is that in the last two weeks my small red spots have turned into raised large red spots. They is more itch with these raised spots. Has anyone experienced this condition? I also have polymyalgia rheumatica for which I take 5 mg/day prednisone. Have tried to decrease to 4 mg/day but muscle aches return.

REPLY

Hi @billjan you may have noticed I moved your post to this existing discussion on Tumid Lupus per the suggestion of @johnbishop so that you can connect with others will similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

That must be frustrating to be unable to find a treatment for your red spots. I would like to tag fellow Connect members @oregongirl and @paulamiddleton as they may be able to offer you support.

What treatments have you tried so far?

REPLY
Please login or register to post a reply.