Daughter Lupus?

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New Member

Date Joined May 2014
Total Posts : 2
   Posted 5/8/2014 9:00 PM (GMT -6)   
Hello all. I've been on a 19 year quest to try to figure out what in the world is going on with my poor daughter. When she was a baby, for the first 5 years of life she had severe eczema. When she was outgrowing this, she started to experience pain in her legs and knees. We had her to several doctors who kept saying it was growing pains. As time want on, she continued to experience flares in her knees which then spread to her elbows. In time her flares became quite wide spread. She did not have positive Ana. She developed nausea and vomiting with her flares to a very debilitating degree as well as migraine headaches. They diagnosed her with fibromyalgia when she was 17 and I finally resolved to accept this but reluctantly because of all of the nausea and vomiting. Recently (a couple of weeks ago) she was in the hospital for 4 days after being bitten by a brown recluse spider. She was discharged and the bite healed very well. However. I took her back to ER because she had superficial clots in her arms (A LOT of them). They did a sonogram and discovered deep vein thrombosis in both arms. They said it was not due to the spider venom. While researching (because it is very uncommon for a 19 year old to have dvt, let alone in both arms), I found some sort of lupus coagulation disorder (which her rheum dr will test her for) and I'm back to thinking of lupus. She can't work due to pain. She didn't finish HS because of her level of pain and illness. And I'm a mental health professional with a masters degree so it's not like I don't value education (which I felt was what the school thought). I really wish that I could take this from her and give her a better life. Also, while she was in the hospital they gave her steroids and she went nuts (really raging and nearly psychotic) so I don't think she can have steroids. If she did have lupus, what treatments could help with pain?

Thanks. I know this is a bit presumptive but I really wish we had answers :(.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 5/8/2014 10:34 PM (GMT -6)   
There are several meds used to control Lupus. Plaquenil helps slow the disease. Prednisone (which is a steroid so she won't be using it!) is generally used to control inflammation. There are some other options to control inflammation that are used less frequently because of the side effects.

Then there are a handful of meds used to try & "quiet" disease activity (Rhemies tend NOT to use the word remission) - Imuran, Cellcept, and MTX come to mind.

Have you read about how to diagnose Lupus? You need to have 4 of 11 symptoms, see www.lupus.com. The vomiting sounds like maybe another more GI-oriented auto-immune disease, like maybe Chrons or something? And I know there are some auto-immune clotting diseases as well, but don't know much about them.

Best wishes
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/9/2014 5:39 AM (GMT -6)   
I'm sorry to hear that your daughter has struggled so with her health. Like Lynnwood mentioned there are drugs that can help with lupus. It's a shame she reacted the way she did to the steroids. They can be a Godsend at times.

I've had lupus for 26 years now. I started showing my symptoms when I was 17, but my older siblings have mentioned that I was a sickly kid. I don't have many memories of my childhood as I was raised in an abusive home. Anyway, my brother and sister said I always seemed sick.

The medications that are used to help lupus may take your daughters pain totally way, or it may not and she may require to take something stronger. This is a huge personal decision that a lot of lupus patients have to face. Some take the narcotics and feel better, others elect not to and just hurt. Some people try to go the natural route.

I will say that when going the natural route, you need to be very careful with the herbs as some of them can make a lupus patient sicker than they already are. Plus, if she does indeed have lupus, she needs to avoid taking things that will boost her immune system. Lupus is an auto immune disease and our bodies look at itself as a disease and it tries to kill itself. When our immune system is working good or great, our lupus will be attacking it as fast as it can.

Make sure you check out the lupus foundation website. If you have more questions please feel free to ask. Hope your daughter and you get some answers soon.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

New Member

Date Joined May 2014
Total Posts : 2
   Posted 5/9/2014 3:18 PM (GMT -6)   
Thanks for all of the feedback and support. I guess we just keep digging. Another thing I remembered was a few months back she told me that her hair was coming out when she ran her fingers through it. She was afraid it was some parasite. There have been so many "weird" things through the years. It would be terrific to have answers. That's why I was ok with fibromyalgia ... It was an answer. :). And it may be that she has fibro and a clotting disorder.

New Member

Date Joined May 2014
Total Posts : 12
   Posted 5/9/2014 10:36 PM (GMT -6)   
you can do all the above, or you can search for a alternative integrative doctor who will try to find the causes instead of just treating the symptoms. she should be tested for vaccine toxicity, gut permeability(leaky gut) adrenal issues, vitamin and mineral deficiencies and other things.
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