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And now I have lupus...

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Posted 7/28/2010 1:46 PM (GMT 0)
I've been on the boards for a little while now due to Fibromyalgia and Chronic Fatigue Syndrome amongst other things like IC, IBS, Vulvodynia, Hypoglycemia, gastric ulcers and the list goes on.  Back in march, because of all the surgeries, constant pain, etc. they also did all the tests for autoimmune type diseases and although a few were on the border they said I was ok.  Well I finally (after 5 months) had the appointment with my rheumatologist and she wanted to run some tests again but specifically do the ANA IFA test instead of the regular one I had because everyone was pretty certain with the course my life has taken with disease and surgeries, etc. and family history (even though I'm only 26) that I had an autoimmune disease even when the first results came back ok.

So I find out yesterday, I was in the higher range of what she considers "the middle".  It was positive, but she said she considers me having lupus in the early stages.  She is starting me on the antimalarial meds and hoping we can cut the symptoms down and that will be all I need to be on for now - aside from the multitude of drugs I'm on for everything else.  I've always had some kidney problems and my liver counts have been slightly elevated for a while...I'm just scared now.

When I got my diagnoses of IC, Fibro and CFIDS (amongst the others) it took a long time, but I accepted it because I Thought...well this sucks because I'm always in pain, but it's not going to kill me or shorten my lifespan or anything...just good days and bad.  But now I'm scared, because of how this disease can affect your organs....it's not like the others.  I haven't had the time to do as much research as I'd like, but I just wanted to introduce myself on this forum and any suggestions or tips or thoughts from those of you that deal with this or have dealt with it for a long time would be appreciated.  My other conditions give me pain every day, it's just worse some days.  Are there flares with this or is it all the time?

I really appreciate the responses because I haven't told a soul yet...I'd like to be a bit more informed before I do.  Also, the drug she's putting me on is Plaquenil.  She said I may have nausea for a while and it's not immediate - it takes some time.  Does anyone have experience with this drug as well?  i could list all the meds I'm on if it would be helpful but its long so I won't do that unless someone thinks it's neccessary.

 

Thanks again - I'm used to the shock of being diagnosed when i knew something was wrong, but I really thought it was over and was genuinely shocked when I got this call...it was the last thing I expected.  Thanks in advance for any personal information from your own experiences...I think that will be really helpful along with reading more about it.

Posted 7/28/2010 3:04 PM (GMT 0)
Hey there! Welcome to the Lupus forum of healing well! Sorry to hear about the diagnosis but glad you are reaching out for support. That is a big step and hopefully you will stick around and get to know us and we you! I was 19 when I was diagnosed, now I am 22. It has changed my life 100% from where I was prior to lupus but some of the changes have been for the best.

about plaqunil...almost every lupus diagnosis is started off with Plaqunil. It has shown to help lower the risk of developing organ involvement from lupus. It can take several weeks to months to notice an improvement but I would strongly recommend you trying to stay on it if possible. the 2 biggest complaints I see is nasea and diarrhea. but most of the time those will pass when your body gets used to the plaquenil.

Yes, this disease can effect your organs but it is deffinatly not a death sentance. The earlier each issue is caught, the better. Try to keep each apt with your rheumy and always go to the blood work they have ordered for you! This is vital to help moniter the disease activity. I know others will be along shortly to give you some advice, the biggest piece of advice i can give you is listen to your body, if you need sleep, sleep! If you know something isnt right inside of you, go to the doctor and let them know your concerns!!!
Posted 7/28/2010 3:53 PM (GMT 0)
Welcome to Lupus!

Remember that just because it *can* affect your organs that does not mean it *will* affect them.

Many of us have our symptoms confined to joint/muscle inflammation/pain and minor neuropathy with maybe some brain fog tossed in. Nothing that can't be dx as part of your fibro if you visit a Dr that leans in that direction. I've been on the lupus board several years and I really feel like those of us who get the plaquenil early on are either "saved" from organ involvement or at least have it postponed.

My advice is to spend your energy living your life, don't research lupus to death & worry. Just deal with symptoms if they arrive, and keep as active as you can be. Practicing measures to delay lupus such as plaquenil, mild regular exercise, eating well balanced meals, and getting good sleep will/can hold off more serious involvement for quite a while!!

Hope you feel better soon,
Posted 7/28/2010 4:11 PM (GMT 0)
Hi pennstate. I also have lupus. It was believed that I had CFS and fibromyalgia before that and was diagnosed with it. I also have IBS and GERD. These, apparently, are connective tissuse disorders that are common with lupus. You can go to lupus.org and get great info from the Lupus Foundation of America. I am taking Plaquenil. I've been on it since last July and it took about 3 to 4 months to see any significant difference in my symptoms but I feel much better now. The drawback is that you have to have your eyes checked by an ophthalmologist every 6 months or so to be sure the medication is not causing damage to the retina or macula and protect your skin from the sun. But, you need to do that anyway with lupus because sun causes flare ups. Having said that, I would definitely recommend the Plaquenil. It is the least risky of all of the medicines used for lupus. You can live a long and productive life if you get this early and stop the advancement of the disease. I belong to a support group here and so many of the young women there are seriously ill. One has had 50 surgeries so do what you can to prevent worsening. I also might add that artificial sweeteners are OUT. They are bad for anyone who has any of the illnesses we have. Try to stick with natural products as much as possible and get lots of rest. You'll be fine. If you believe in God, then trust Him. I gain a lot of strength from that and the wisdom He has given me to understand what I need to do to feel better. Since we are not supposed to be in the sun, add 1,000 mg of Vit D. It is an excellent vitamin for many illnesses and is also supposedly a good anti-inflammatory. 

Feel better. My email is [email protected] if you need someone to talk to.

Posted 7/30/2010 4:50 PM (GMT 0)
Thank you all so much for your replies.  I'm really glad to know that I'm on the right track with the medication.  I do feel better having some answers because it just seemed so much more than CFIDS and Fibro, but yet this is more serious but you're right, I just have to live life and not dwell on it.  I'm used to the worst flare ups and the worst pain, so there can't really be anything new thrown at me that I haven't been through at least at this point.  The other boards have been great for support so I'm very grateful to be meeting all of you and have such great responses to questions...I really like hearing folks personal experiences with different treatments than dry articles/books.

Thanks again :)

Posted 8/1/2010 4:05 AM (GMT 0)
If you really want some basic knowledge about lupus and its treatment then get THE LUPUS BOOK by DR Wallace. It is very helpful
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