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I'm in the midst of a possible Lupus diagnosis, I have some questions for you all.

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Posted 7/17/2008 1:18 AM (GMT 0)
I have a history of autoimmune issues:

Crohn's Disease
Seborrheic Dermatitis
Hives

A recent outbreak of petechiae all over my shins and anywhere significant pressure is applied to my limbs has sparked some concern with my doctors. The 'petechiae' are red at times, but other times take on a brown sort of frecklish appearance. They aren't going away.

I have issues with extreme fatigue, muscle pain, skin tenderness, supposed rosacea that is sensitive to many products and the sun (maybe malar rash?), migraines, joint pain, and TERRIBLE BRAIN FOG amongst other things. In the past I have had kidney problems. I have two white matter lesions on my brain, which are, according to my neurologist, from migraines.

I have tested positive for anti-nuclear antibodies.

My rheumatologist suggested I start Plaquenil. He says that my immune system is fighting back whether I have Lupus or ot.

It seems like many Lupus symptoms overlap with Crohn's. I know there is SOMETHING wrong with me, more than Crohn's, but I'm not convinced it's Lupus. The one thing that makes me suspicious is that I have the petechiae, which is not really a side effect of Crohn's...

Should I try a course on Plaquenil? Can you share any experience or knowledge you have about this drug? I'd also love any information or opinions about whether my symptoms are Lupus-like. I am suspicious of one of my medications - Spironolactone - and I'm trying to find out if this can possibly cause petechiae.

Thank you all very much.

Post Edited (meowese) : 7/16/2008 7:21:06 PM (GMT-6)

Posted 7/17/2008 1:34 AM (GMT 0)
Hi Meowese . . . welcome to the forum. I left a link in your Crohn's post for some information on ANA testing (anti nuclear antibodies). http://arthritis.about .com/od/diagnostic/a/ana.htm Sorry, you'll need to copy and paste the link into your browser. It just won't activate properly. In that article, you'll see reference to a "pattern" seen in +ANA. Do you know what pattern yours is? It might help you figure this out. The pattern doesn't provide a slam dunk dx, but it helps. Different patterns help the doctors look for different problems. There is a link at the end of my signature "4 of 11 Criteria" which will explain how lupus is diagnosed. Quite a process!! So it usually takes a fare amount of sleuthing on the part of doctors to figure things out. Usually a rheumatologist is the doctor that dx's lupus. It would be a good start if you have some aches and pains in your joints or connective tissue. I hope this helps.
Posted 7/17/2008 1:42 AM (GMT 0)
I don't see that it would hurt any to try the Plaquenil for a while. It does take 6-8 weeks before most of us see any difference. There is a lot of information available about lupus -- check the links in my signature, esp. the 4 of 11 criteria they use for dx. It does seem to me that several of your symptoms are consistent w/Lupus. Check out some of links & let us know if you have more questions. Cheers,
Posted 7/17/2008 2:37 AM (GMT 0)
meowese--
Its odd you bring up petechiae as I have liver disease and the liver forum I go to has a lot of people who get petechiae and lots of information about the connection between liver and kidney disease. Spironolactone is often prescribed in conjunction with Lasix for liver disease and there are many people on liver forums that have extensive experience with it, petechiae and the side effects. Do you have liver disease that you know of? Have you seen a hepatologist to be evaluated ever? Elevated ANA and brain fog and autoimmune type problems can occur in conjunction with these diseases. I take plaquenil, but in my case, I'm hoping my ai problems might get better with treatment of other conditions. I'm assuming you've been tested for all the normal stuff, hepatitis, lyme disease, TB and all the rest. You might want to double check with your doc.

Healingwell has a great liver forum and I'm sure there are plenty of people there that might be able to help. Also, IMKindly runs a great liver failure support forum at
http://forums.delphiforums.com/n/pfx/forum.aspx?webtag=dp-support&nav=index
Then select Liver Failure Support Forum. There are great informational posts and IMKindly just has so much info. Its weird to register there, you have to register then add the Liver Failure Support forum to your forum list--subscribe to it.

Take care and I hope you get better. It's awful finding out all this stuff wrong. I hope you feel better soon. Take care, Marji
Posted 7/17/2008 2:45 AM (GMT 0)
Hi Meowese,

 

I have petechiae too.  It's very common in lupus actually.  If you have any type of thrombotic stuff going on, you'll likely get them. I have thrombocytopenia which is the cause of my petechiae.  Your symptoms sound like lupus, but could fall into the categories of mixed connective tissue disease (MCTD) or undifferentiated connective tissue disease (UCTD).  Lupus is all part of those.  You might get a lupus diagnosis or you might not.  Whatever the doctors call it, it will need to be treated with the same meds as a lupus patient would take, which is why they want you on Plaquenil.  It works great for many people. Might help with the chrons too. 

 

Ginny

Posted 7/17/2008 2:54 AM (GMT 0)
I would take the plaq if for no other reason than it is the only thing that has ever gotten rid of my fatigue. At first I thought it wasn't helping then I came home from work one day and without even thinking about it cleaned my kitchen!!! Wow. The fatigue has not come back. If I were you and the doc recommended it I would take it.
Sj
Posted 7/17/2008 2:58 AM (GMT 0)
Thanks everyone. It's great to have a place like this to come to, and your responses are very helpful.

Cured4real? - I've had extensive blood testing. They'd notice liver disease, right?
Posted 7/17/2008 5:45 PM (GMT 0)
HI meowese and welcome. It can be really hard to sort out symptoms when you are dealing with more than one autoimmune disease and probably really hard to tell if you are developing a new one. I would trust your instincts about what is going on with your body. If you think you have something going on that you think is mroe than Crohns, keep looking until you get some answers. I agree that it wouldn't hurt to give the plaquenil a chance. Let us know if you have any other questions. Take care
Posted 7/28/2008 1:13 PM (GMT 0)
I also have Crohn's and have been experiencing similar symptoms... I just really don't need another autoimmune disease... the Crohn's has been enough.

I am aggravated because I've gone to my GP, and he thinks everything is just a side effect of the Humira that I'm taking. I think it's something more.

Good luck!
Posted 7/28/2008 2:33 PM (GMT 0)
I didn't think plaquenil was doing any good but sure enough when I went off it for a week the fatigue got much worse and the hives became uncontrolable. It made me realize how much it was working in the background. I'll never stop taking it again.
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