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Old 01-13-2010, 08:00 AM   #1
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Not Lupus after all

I went to a rheumatologist back in October, and she said she suspected Lupus. Started me on Plaqunil. Went back in December, and she said she wasn't so sure about Lupus. Went to a Cardiologist (Chronic chest pain, pleurisy and pericarditis) He DX me with Chronic Pericarditis. Symptoms of this could be obviously chest pain, shortness of breath, joint and or muscle pain, and severe fatigue due to heart not pumping enough blood. All of these symptoms i have. So now they are thinking i may not have Lupus at all and it is simply Chronic Pericarditis!! I think this is great news!!! I go back to the Rheumy in April and we'll go from there. I'm also waiting on the results from my stress echo at the Cardiologist.

 
Old 01-14-2010, 12:59 AM   #2
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Re: Not Lupus afterall

Did your Rheumatologist do any lab studies that were a basis for her initial diagnosis? I know that I do have chest pain most of the time and sleep nightly with a heating pad wrapped around my chest. It is commonly seen in those with Fibromyalgia and since I have Lupus as well, I can't be certain which is the offender. ( 25% of Lupus patients also have Fibromyalgia) I would continue the lupus meds if instructed to do so as they do take time to get in your system and for you to see a response. Too, a lot of the studies used in diagnosing lupus are also markers for inflammation of other disorders, so it may not be conclusive for Lupus alone. I also have some heart issues, so I know when one suspects multiple disorders, that it can be tricky in getting the right diagnosis. I know that overall my Lupus treatment has helped with my shortness of breath and the chest pain I was experiencing, and my Fibro pain has improved overall as well. I would not be so quick to dismiss unless there was no lab studies to back it up.

I do hope your echo results are encouraging. Also if you are not familiar with costrochondritis, you might want to read up on the symptoms of that as well. When I first started having my chest pain, I was evaluated by chest xray and rib scan to be sure there was no structural problem. Initially they thought it was Pleurisy, but it would drag on for months, get better and then reappear. I was given muscle relaxants and subsequently the Fibromyalgia diagnosis and later found to have Lupus. I do know that there are several with FMS that do have chest pain issues, you may want to read on the FMS board as well to research what has worked for those with these symptoms.

Last edited by goldyfm; 01-14-2010 at 01:07 AM. Reason: additional comment

 
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Old 01-14-2010, 06:04 AM   #3
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Re: Not Lupus afterall

riedelschar, what Goldy wrote makes total sense to me; I also beieve these problems are very common in lupus.

Obviously you need to get SOMETHING as an answer, so I know you'll keep trying. Has anyone suggested a pulmonologist as another possible avenue (because of your pleurisy)?

My local drs. went back & forth on my Dx. After years of limbo, I was happy (?) when two metro specialists dx'ed me. BTW, I had episodes of shortness of breath, chest pain & rib pain. Also joint pain, migraines, anemia, chronic GI problems, etc. But I was "lucky" to have rashes, which created another line of inquiry (dermatology).

What did your rheumie find earlier that pointed in the general direction of lupus? (Like Goldy, I'm curious.) Did you get copies of your bloodwork? Did you see results for special autoimmune panels?

I write this not to discourage, but in the spirit of KEEP TRYING! And keep us posted, when you have time, OK? Warm wishes, Vee

 
Old 01-14-2010, 05:37 PM   #4
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Re: Not Lupus afterall

Well they did initially send me to a pulmanologist. He didn't see any issues with my lungs. As far as the Rheumatologist she said my ANA levels were borderline and speckled. She said everything else was okay. She was basically thinking Lupus due to my symptoms and borderline ANA. Joint pain, pleurisy/pericarditis, severe fatigue. She just said it was a possibility, so she started me on the plaquenil. Which i will still stay on until at least April, to see what happens.

On my echo in July showed pericardial effusion, slight pericardial thickening. Again still waiting on the most recent one.

Only symptoms i have now is fatigue and chest/heart issues.

I'll keep everyone posted and thanks for the posts!!

 
Old 01-15-2010, 05:39 AM   #5
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Re: Not Lupus afterall

riedeselchar, in addition to that borderline ANA result, did you see tests for *more specific* autoantibodies? I don't think rheumies rely on ANA alone to suggest lupus---because ANA may be positive in other conditions within rheumatology, AND outside of rheumatology, too!

My drs. ran tests for autoantibodies seen in lupus, such as anti-ds-DNA, anti-ss-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antihistone, antiphospholipid, rheumatoid factor, ETC. (There's a whole BUNCH of them!) My drs. didn't offer any treatment until they proved it was lupus, meaning I met enough of the formal SLE criteria. Anyway, I sure hope you're getting closer to answers! Take good care, Vee

 
Old 01-16-2010, 09:08 AM   #6
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Re: Not Lupus afterall

Ya know Vee, My doctor never said anything about the other tests. I guess i'll have to ask when i go back!! Thanks!!

 
Old 01-16-2010, 02:03 PM   #7
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Re: Not Lupus after all

riedeselchar, look at that "sticky" post with the 11 criteria for dx'ing SLE. To a newbie, I think they're about as clear as MUD!

To be dx'ed with *systemic* lupus, you generally (not always) must meet 4 or more, not necessarily all at once. For example, you could meet them one by one, over time. My rheumie said to picture the criteria being checked off in indelible ink, meaning once checked, a criteria stays checked forever.

Now look at the criteria that are lab results: #9, #10, and #11. Those were the ones I was wondering about---and I think Goldy was probably thinking of those too---because positives in those groups would certainly add a lot more weight to a Dx, one would imagine. Those are the tests & results I'd want to see, if I were in your shoes.

(Theoretically, it looks as though someone could meet 4 *other* criteria excluding all the ones that are lab results? Dunno if that's likely, or how often it happens like that. Hmmmm?

Maybe you could ask (1) on exactly which criteria your dr. based the Dx? (2) And ask for copies of all labs, to create your own personal file.

Curious: did you feel any better since starting Plaquenil? I think it builds slowly, taking as long as 4-6 months to reach full effect in some people.

Anyway, I hope our posts are helping you as you compile questions. This is not easy stuff for mere mortals to grasp! So I hope you keep reading & posting. Until later, bye. With my best Vee

 
Old 01-17-2010, 07:00 PM   #8
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Re: Not Lupus after all

Well the rheumy told me i met 3 for sure....possibly a 4th. The only relief i've had from the plaquenil was my joint pain seemed to be better, but recently i've had it return, and am still on the plaquinil. Not sure, but in april when i go back i'll ask more questions!!!

 
Old 01-18-2010, 05:49 AM   #9
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Re: Not Lupus after all

Good morning. Have they treated your pericarditis? If not, maybe another question you could ask: If this *is* lupus, is Plaquenil the appropriate drug for pericarditis, or is something stronger generally prescribed for pericarditis?
I really hope you get clearer answers soon. Thinking of you, Vee

 
Old 01-18-2010, 08:58 PM   #10
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Re: Not Lupus after all

Yeah Vee, some of the answers i get are clear as mud...lol. I go to the Cardiologist Wednesday to discuss further testing and or different meds. He told me that if i do get a positive DX of Lupus, then that's why i'm getting the pericarditis. If i don't have Lupus, then he thinks it's idiopathic AKA they have no idea why. lol They treat the pericarditis with Naproxen and pain meds, it seems to treat it short term, but i've always got it back.

Today i woke up with a sharp pain in my right calf which kinda freaked me out, cause my first thought was blood clot. It hurt all morning and started to swell. They sent me for an ultrasound, which came back clear. Good news there. I'll keep ya posted and let you know what i find out at the Cardiologist. Thanks!!!

 
Old 01-19-2010, 09:25 AM   #11
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Re: Not Lupus after all

Just wanted to add that I have a horrible time with my legs at times. I think it is the FMS or Lupus doing it for me. I had a PAD workup also and it was fine. It is scary when out of the blue your legs literally feel like they are going to fall off. I do the same thing for my legs as I do for my chest, wrap them in a heating pad. It does seem to help. Also lying down seems to help for a short time. I wish I had bought stock in Sunbeam. I purchase several heating pads a year. May want to read on the FMS board, as there was a bath using Epsom Salts and peroxide that some seem to use for relief.

 
Old 01-26-2010, 05:35 AM   #12
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Re: Not Lupus after all

Well i went to the cardiologist last week and the good news is i have nearly a 0% chance of a heart attack any time soon. But other than the Chronic Pericarditis, he doesn't know why i get chest pain on exertion, and why this chest pain is constant and gnawing. He wants me to try prevacid or similar med to make sure i don't have acid reflux. I'm to try that for 2 weeks and see if my symptoms improve. See my rheumy in April. But to be honest i'm getting VERY discouraged. I'm pretty tired of all the doctors visits to find out NOTHING! Not to mention the $1000 in doctor bills i have to pay...and that's after insurance has paid.

 
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