Anybody with Lupus?

Yesterday was a very stressful day.
So I have been getting different kind of scars on my toes. They appear, get really dark and the skin eventually falls off. I never bothered about them until about 4 months ago, when the new skin became very sensitive and I would hurt (in terms of pain) just by running (when it touches the shoes). GI could not figure out so I saw a dermatologist yesterday. No diagnosis there either, so he sent a biopsy to the lab. I asked for his gut feelings. One was lupus..
He supported this suspicion by pointing to my UC. He goes, when you have one autoimmune condition, there is good possibility that you have another too, may not be as severe as the primary one. Plus, I am on Imuran so imuran may be controlling Lupus too. I got a total brain freeze and could not discuss anything more.

I wonder if anybody here has Lupus and how they are treating it. What are the symptoms like?

Thanks in advance.

What is the likelihood that you actually have lupus? The skin on your toes could be many things and I agree with Sherry that sometimes MDs just think AI disease, weird skin stuff or pains that they can't figure out (and really they can't figure out a lot of things) equals lupus. My brother also was told he had lupus two years ago (has had uc for years). He had pains in his chest - numerous ER visits at various ERs with some scans and tests and he was told he had had respectively asthma, lupus, a heart attack and a few other things. Turns out it was hundreds of PEs in his lungs which they missed for weeks and luckily he did not die (they also told him that when they finally figured it out). So, point is they were all wrong. And, women are much more likely to develop lupus (not that that makes it impossible but still). I know how scary it is as it's one of my big fears too but try not to panick - it's good that he'll run the tests though.

I knew a gal with UC, after taking Remicade, she developed drug induced Lupus but her conditions were she could not walk by herself and she had to use wheelchair, her joints swelled to the point that she could not take care of herself...

It is better not to sweat over things that do not occur though, because more you think about things that would happen to you, you get stressed over...which I understand (I have been there...)

You should think like I only have UC, and thats it, because more negative things you think, negative things would actually happen to you. Its important that you would not be in denial of UC because you need to take care of yourself, but I realized there is no point being so down on myself.

Support your liver and explore the glucose connection and I bet it goes away. You dont have lupus if you are seeing that glucose too and it looks like vasculitus.. dont let yourself get taken there.. I know it used to be one of my worst cases too.. Lupus and MS.

I always wonder if I have something, I am so tired 80% of the time, I am practically walking in my sleep. I haven't had time to see a rheumy but my GI says it's probably just how I am. She's very positive thinking.

London! See! MTHFR, Im telling you guys.. I didnt have this mutation on my radar till the rheumy tested for it. Support your methylation pathways and you can detox you described.. Ie, the rashes.

Yeah, they couldnt tag lupus to me or Sjogrens because my ANAs and sed rate are perfect.

Lyme hit me outta left field. Obviously, as you can tell from my name, I knew it was a pathogen for years but Ive never suspected Lyme. All kindsa crazy other things as Ive travelled extensively but never Lyme.


I havent been able to parse it all yet, but I do think B12, methylcobalamin and L-5 methylthetrahydrofolate are two important keys most of us are lacking. We know 40% of the population has one of these mutations.

deltaforce, are you taking anything else to balance that B12? what form of b12 are you taking?

Post Edited (PathogenKiller) : 3/16/2013 6:35:51 PM (GMT-6)