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Lupus
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Posted 9/25/2012 1:30 PM (GMT -5)
Hello.  about a year ago my hair started falling out (itchy scalp preceeded that).  After bloodwork and a scalp biopsy I was diagnosed with MCTD and/or Lupus.  One doctor said it is not Lupus but one did....after reading some of the chats on here I see that is a common problem.  I do have a positive ANA.  The hair loss is my main problem.  By November of last year it had all fallen out.  I bought a couple of wigs.  My dermatologist prescribed a topical solution to use and my Rheumatologist prescribed Plaquinil.  My hair stated to grow back in the spring and by July 1 I was able to go without a wig again.  I had a pretty good month in July and then the hair started falling out again.  I am back to wearing a wig.  I also had my 6 month checkup for my eyes and my opthomologist thinks I should go off the plaquinil since my color vision test did not go well.  That is the test where you have to look find the number on the page with all the colored dots.  6 months ago I got 15 out of 15 right.  This time I failed the same 5 in each eye.  I will go back to the Rheumatologist this week to find out what else if anything I should take.

Is it mandatory to be on medication?  Has anyone not taken medication and had their hair grow back?  I would be interested in hearing about others with the hair loss issue and how they are dealing with it.  I assume this is just one of many symptoms I can expect?  rolleyes

 

Posted 9/25/2012 4:53 PM (GMT -5)
Cate55, I do not take meds and my hair is so thick it is hard to comb through it. It is very fine also. I will tell you what I have done...but you have to check with your doctor. I started out with 2-1300mg evening in primrose, 3-1000mg. Omega3 fish oil, 2gr. or 2000mg of Turmeric Curcumin and 2 source natural Hyluraronic Joint Complex. It takes most of the pain away and not only my hair is thicker ... my eyelashes are long and my eyebrows are thicker. The side effect is that the hair grows faster and you have to deal with that.

I have had to increase the amount I take...but the other is a good place to start. Good Luck and check with your doctor or pharmacist to make sure nothing interacts with anything that you are taking.
Posted 9/25/2012 5:21 PM (GMT -5)
If plaquenil isn't good for you anymore there are other medicines to take....MTX, Cellcept.

The Plaquenil is first step medication to slow down the progression of the disease.
Posted 9/27/2012 1:01 AM (GMT -5)
Plaqenil slows down the progression of the disease but it doesn't go away, right? My rehumy made it sound as if my Lupus was going away because my ANA numbers were coming down..what do you all think?
Posted 9/27/2012 6:21 AM (GMT -5)
Mine told me it does not go away.
Posted 9/27/2012 7:08 AM (GMT -5)
Lupus does not ever go away. It may move into a "quiet" stage, like mine is where it's mostly quiet except if I get too tired, loose sleep or don't eat.

It doesn't go into remission - just gets quiet. That's the consistent story I get from 3 rhemuies & an internist.
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