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RA and now probably Lupus, not impressed

Post: #1
07-27-2012, 03:41 PM
member76563 Offline
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RA and now probably Lupus, not impressed

My RA has been unpredictable for the last two months so I arranged an appointment and went yesterday. My rheumatologist took one look and said I have Lupus because of the rash on my cheeks and my nose, mostly on my cheeks. I asked him if was incorrectly diagnosed with RA before and he said no, that I just may have Lupus too.

Needless to say I am not so happy with this news. My girlfriend is trying to be supportive and reminding me that it may mean I get my symptoms under control but it is hard to see it that way...

I will know better on the 6th... Does anybody else here have both?




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Post: #2
07-28-2012, 04:03 PM
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RE: RA and now probably Lupus, not impressed

I am sorry that you have one more cross to carry. That is no fun. I think someone else here has mentioned having Lupus and RA.




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Post: #3
07-29-2012, 02:40 PM
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RE: RA and now probably Lupus, not impressed

I do not have lupus but I get the rash frequently so with my different rheumies I have been tested each time. Each time they found nothing so you may not have it. I do not want to raise false hopes because I do not know how many people get the rash but do not have lupus. I just wanted to provide my experience.




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Post: #4
07-29-2012, 08:04 PM
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RE: RA and now probably Lupus, not impressed

I have lupus with RA - my consultant at diagnosis 15 years ago christened my condition 'Rupus!' Like you, I was devastated at the diagnosis - RA is bad enough, but two for the price of one? That's one BOGOF I could have done without. I also had the face rash, and my hair was also coming out in handfuls, which was the real giveaway.

At one time, a diagnosis of lupus meant that you only had 10 years to live at most, because organ failure was inevitable. These days, the disease modifying treatments for lupus mean that you can enjoy a long and pretty comfortable life, so try not to be too despondent. One thing I would advise you to do to help yourself is to try and eat a mainly anti-inflammatory diet. Google 'anti-inflammatory foods' and include as many as possible in your diet. I also take a fish oil supplement, and my lupus is under control most of the time. Good luck, and come back and let us know how the diagnosis goes.



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Post: #5
07-31-2012, 12:51 PM
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RE: RA and now probably Lupus, not impressed

Many people with Lupus have had success adopting a Paleo style diet. You might want to read some of the forums for information about how the Paleo diet can help. Many of these autoimmune diseases can be managed by the Paleo diet.



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Post: #6
08-01-2012, 11:01 PM
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RE: RA and now probably Lupus, not impressed

Thanks for telling me about your situation. I don't know what to think right now. I have been a bit of an ass these last few days to EVERYBODY. I could smash something, I am so angry. My girlfriend is trying to help, but it isn't working.




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Post: #7
08-02-2012, 06:03 PM
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RE: RA and now probably Lupus, not impressed

Doug, I was exactly the same when I had my diagnosis. RA was bad enough but Lupus
(08-01-2012 11:01 PM)dougL Wrote:  Thanks for telling me about your situation. I don't know what to think right now. I have been a bit of an ass these last few days to EVERYBODY. I could smash something, I am so angry. My girlfriend is trying to help, but it isn't working.


Doug, I was exactly the same when I was first diagnosed. RA was bad enough but Lupus - it wasn't so ong ago that a diagnosis of Lupus meant a life span of no more than 10 years, because eventually, there would be major organ failure. I did all the 'why me?' stuff, and threw things around and got the anger out of my system. You need to do that as well, because then you'll be able to cope with it and do what you need to do to manage it.

It sounds as if you have a great support system, and I'm sure they understand what you're going through, and why you're so angry just now.




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Post: #8
08-03-2012, 12:17 AM
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RE: RA and now probably Lupus, not impressed

It is natural to be angry. I know how I felt when I had my RA diagnosis. Try to give yourself some away time by letting people know your in a bad mood. They should give you some space and will be there when you have digested the new information. You can also vent here. We are not so easily offended.




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Post: #9
08-04-2012, 12:26 AM
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RE: RA and now probably Lupus, not impressed

Thanks, I am cooling down now. My girlfriend made me a bunch of food and went away for the weekend so was able to chill. I guess I have a lot more to learn now with a whole other disease to read up on.




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Post: #10
08-05-2012, 12:19 PM
member93013 Offline
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RE: RA and now probably Lupus, not impressed

I know how you are feeling, it is a shock to your system and your cortisol levels go through the roof. It's good that you have a supportive girlfriend to help you through it. Knowledge is power - understand your condition and you will learn to manage it without it affecting your life.



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