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Old 11-27-2009, 09:06 AM   #1
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Unhappy Got my diagnosis

Well its a kind of good news/bad news situation, I finally have a diagnosis but its not a particularly welcome one. I have Lupus (SLE). Im still kind of shellshocked about it, I was honestly sure they were going to tell me they hadnt found anything wrong. And I certainly never thought it would be Lupus.

When I first went in, I saw a woman doc as my consultant was very busy and she said that my Anti Ro and my Anti something else tests had come back positive as well as a few other results which I already knew about. She said these results mean either Lupus or Sjogens. She examined me further and asked a fair few questions and then gave me her diagnosis - Lupus. She went into get the consultant for a second opinion and he confirmed her diagnosis. Apparently this explains alot of things, my skin photosensitivity (she wants me to bring the photo of my chest rash in next time), my purple cobweb style rash I get when im cold (I thought that was normal!!) It was there on my hands today and she pointed it out as a main factor of Lupus. Also it explains why I am always getting certain infections.

Have been put on 2 diff steroids, Hydroxychloroquine 200mg 2 times a day and Predisone 2.5mg 3 a day for 21 days and then 2 a day for a further 21 days. Then I will have another appointment for more directions on my meds. Gotta take paracetamol 4 times a day, ibuprofen 3 times a day and codeine twice a day! Im going to rattle!!!

Not really sure what to think about it all......

 
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Old 11-27-2009, 11:07 AM   #2
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goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: Got my diagnosis

Our reactions are similar in that I never thought of lupus either. I actually had had a Fibromyalgia diagnosis for about 5 years prior and I honestly thought that was the source of all my problems. I only sought out a new Rheumatologist as I had no results from the countless efforts of the other doctor. I must say that after it sank in, I was relieved to finally know the root of my problem. As I have both FMS and lupus, the treatments for the fibromyalgia was not affecting my overall health issues. I will say that once I began treatment for the lupus, my other symptoms have quietened some. I do hope you see some improvement as I have.

 
Old 11-27-2009, 03:35 PM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Got my diagnosis

FrustratedMom, I'm sorry you were dx'ed but glad that you've been given meds. Yes, it's hard to absorb!

I'm also an anti-Ro lupus Dx (yes, it's a real dx). My drs. told me that lupus patients with ONLY anti-Ro have good odds of doing well, BUT that sun avoidance is almost always a "must" for this subgroup. I still have pain & fatigue at times but my nastiest problems receded nicely. About a year after being on meds, I tried going in the sun with loads of block & protective clothing... not good. (I quit trying.)

Here's hoping you respond as well as I have to the meds---or better! Wishing you better days ahead, Vee

 
Old 11-28-2009, 04:26 AM   #4
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Madison104 HB UserMadison104 HB UserMadison104 HB User
Re: Got my diagnosis

Hi FrustratedMom, I too have Lupus. I know the diagnoses is tough to absorb, but knowing early is a good thing. I think it also helps us take really good care of ourselves and by doing so, we get better, faster.

I was diagnosed when I was 27, after 5 years of being so mistreated by doctors that just could not figure out what was wrong with me. I finally found a great Rheumy that I still have and he knew what was wrong by listening to my syptoms. The bloodwork confirmed Lupus. I am now 54 and I have been managing "ok." I have to modify my life, get my rest and do what the doctor says.

I just don't want you to think that there is no hope. Please think as positive as you can, and take the very BEST care of yourself that you can. I believe it really does make a difference. And most of all, know that you are not alone.

Madison104

 
Old 12-16-2009, 10:18 AM   #5
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evam83 HB User
Re: Got my diagnosis

hi, you are definately going to ruttle lol we all do, i was diagnosed in june ( i am in birmingham uk) never took tablets for anything in my life, thought i was gonna find it difficult but when you start feeling better, it will be part of your life, i am on all the tablets you mentioned and the rest, jstt take your time to get used to things, dont rush yourself........

 
Old 12-16-2009, 05:54 PM   #6
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heidiclouser HB User
Re: Got my diagnosis

Mum....sounds like you are on your way to feeling better.

BTW.....Hydroxychloroquine is not a steroid....it is an antimalarial. And it takes 3-6 months to work so you'll need to be patient. In fact, patience is a virtue necessary to deal with a chronic disease.

So hang in there

 
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