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    Old 04-15-2014, 03:27 PM   #1
    Jean M
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    Smile New to This Diagnosis

    Just want to say hello; possibly gain information and receive/offer support at this site. Thanks!

     
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    Old 04-15-2014, 05:06 PM   #2
    WhistleDixie
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    Re: New to This Diagnosis

    Hello Jean....Welcome to the boards=)

     
    Old 04-15-2014, 07:52 PM   #3
    Jean M
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    Re: New to This Diagnosis

    Quote:
    Originally Posted by WhistleDixie View Post
    Hello Jean....Welcome to the boards=)
    WhistleDixie, Thanks for your reply. I am new to these boards, as well as to the diagnosis of Probable Lupus.

     
    Old 04-15-2014, 07:56 PM   #4
    Jean M
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    Smile Re: New to This Diagnosis

    Looking for networking and sharing of experiences dealing with Lupus.

     
    Old 04-15-2014, 08:04 PM   #5
    WhistleDixie
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    Re: New to This Diagnosis

    Jean...That's one diagnosis I don't have, but there are several who do. Keep your post bumped so that it will be seen and answered! TTYL

     
    Old 04-16-2014, 04:30 AM   #6
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    Re: New to This Diagnosis

    Jean, hello & welcome. You called your dx "probable". Does that mean you have a rheumatologist who's running tests but you're still waiting for answers? Or is he/she treating you for the "probable"?

    I had problems from age 3, several bouts very serious. Pain & fatigue from early adolescence. GI problems from mid 20's, migraines from mid-30's, and photosensitive annular (target-like) rashes from my late 30's. Throughout, repeated occurrences of low WBC, elevated sed rate, fevers, and a many infections. I finally headed to a teaching hospital, where new labs and a third deep-punch skin biopsy was done. Dx: lupus, the "subset" that features the anti-Ro autoantibody and one of the two SCLE rashes.

    How about you? I hope you post more of your story. Meanwhile, sending best wishes to you, Vee

     
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    Old 04-16-2014, 11:52 AM   #7
    Jean M
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    Re: New to This Diagnosis

    Waiting for the rheumatologist to confirm or rather "be convinced" (this comes from my own knowledge/background as a BSN/RN. I am convinced myself- not that I WANT this...just calling things what they are. My rheumatologists has suggested Methotrexate and Imuran along with Coumadin my neurologist wants to start me on (evidence of an 'old' stroke found on CT) after my auto accident 6 months ago. I told him that Coumadin and I did not want to become friends! Now I hurt so much of the time, I'm changing my attitude, but still scared. Sometimes I wish I was just an uneducated know-nothing; and just blindly accepted. Thanks!

     
    Old 04-17-2014, 05:00 AM   #8
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    Re: New to This Diagnosis

    Good morning. Personally I'd want my rheum to spell out which criteria I've met before taking drugs as powerful as MTX and Imuran. (My final rheumatologist was forthcoming. Instead of the usual bromides, he showed me which checkmarks he'd already made on the criteria list, plus which he considered still pending subject to further tests. I didn't even have to ask.)

    My mother took Coumadin for years. Although she showed evidence of prior strokes, her doctors also ran clotting time tests before prescribing Coumadin. (Personally, I'd take it if tests warranted, having been in the same room twice when she had strokes, scary.)

    After an auto accident 10 years ago, a friend began having widespread episodic pain. To date, her doctors have deemed it Fibromyalgia, likely triggered by the accident. Multiple rheums she's consulted, all at major teaching hospitals, ruled out lupus and myositis. Yet her issues persist, which infuriates her. (Ironically, she's a doctor herself.)

    I hope your doctors lay everything out to your satisfaction. Wishing you better days ahead, and soon.

     
    Old 04-24-2014, 11:19 AM   #9
    Jean M
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    Smile Re: New to This Diagnosis

    I have upcoming appointment to discuss the methaltrexate/imuran. I still have reservvations, but am so tired of hurting all the time. I am constantly fatigued, and having hot flashes Every day/and night. I guess you have a valid point with the strength of these medications. My husband doesn't think I should 'experiment' on myself! He's not feeling what I'm experiencing. I am making a list to talk with Dr. about, lupus, fibro-myalgia, labs, checklists for symptoms and the need for coumadin? What are the most current lab values? I know friends who've been on coumadin for many(>30) years and are doing fine.. I just want the numbness of this Ranaud's component to stop to be able to participate in everyday life activities without constant worry of another stroke or absence seizure messing things around. I'm hearing 'frustration' in here...I know its part of it!

     
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    Old 04-24-2014, 03:52 PM   #10
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    Re: New to This Diagnosis

    Hello Jean...I have nothing to offer except my full support. Although as I said when I first posted to you, I "know nothing" about Lupus. Having said that, I do KNOW constant agonizing pain...trying to be heard by the medical community, rather than brushed off as a woman past her "prime" @ 52 (21 years post hyst/BSO due to stage 4 endometriosis) I hope that you find your answers soon, as well as a suitable protocol for treatment. I suffer with BOB pain the entire length of my spine, into my arms, hands, hips, and feet. I won't go into the female and bowel issues... I, too wish sometimes that I were clueless, rather than the plethora of "specialists" I've paid good money to tell me I'm nuts=)

    I am currently in med trials (since January of this year) with a pain management doctor affiliated with a semi-local hospital. Believe me, I understand the feeling that sometimes the treatment is worse than the disease. I'm on my third (not a charm...perhaps strike out?) pain medication. As the 3 month mark rapidly approaches, I feel like Rip Van Winkle awakening from a long, horrific nightmare of severe side effects without relief. I have been taking Oxycodone since last Wednesday. The GOOD NEWS is that side effects are minimum thus far. The soaking night sweats are dissipating, and Thank You Jesus...the constipation that threatened bowel obstruction for past 8+ weeks is back to my "normal" level of chronic constipation. I want SO badly for this med to bring manageable pain relief, but apparently the dosage needs significant increase. I have a scheduled teleconference with my doctor tomorrow...I anticipate his increasing both dosage amounts and times. I believe there is potential for this med to help me...I just worry about how high the dosage will have to go=( I can only "feel" the med in my system mentally...which is no doubt, encouraging. However, I NEED to not "feel" the agonizing pain that is virtually untouched by this dosage.

    I'm waking up in the mornings in mind-numbing bone pain, feeling SO SAD I can't speak without crying. I'm afraid the short-acting med is putting me into WD mode between bedtime and alarm clock...and I'm not just whistling Dixie=)

    I'm sorry I've rambled on, but feel free to reciprocate. HUGS

     
    Old 04-24-2014, 07:01 PM   #11
    Jean M
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    Re: New to This Diagnosis

    WhistleDixie,

    I am appreciative of your rambling....I can do a great deal of that myself...especially when someone is listening. Wow, I am feeling like a little "wimpy, whinny-but". You sound as though you are dealing with so much more than I am. I have Renaud's and deal with the cold as ice, purple, tingling hands, fingers, wrists. But my discomfort sounds like nothing to what you are experiencing. If I may, I am adding you into my prayers. God send His Blessings and Mercy to you. I hope you find lasting relief and comfort.
    I need to learn more patience and perseverance; a lesson which began 18 years ago when my identical twin daughters were born! I chuckled while telling God that He had me mixed up with someone who could handle it!

     
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    Old 04-25-2014, 03:26 PM   #12
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    Re: New to This Diagnosis

    Jean, I have been on Methotrexate for many years. It helps me a lot, and gives me NO trouble at all. It is not usually used though with Immuran. Usually one or the other and Immuran is stronger, IMO, and more likely to cause side effects. The dose of methotrexate has a wide range, and is oral or SQ weekly. Do you have antiphospholipid syndrome that caused a stroke? If I had a stroke, with APS, I would take Coumadin. A pain, yes, but not compared to having more strokes. These are not experimental drugs. They have been used for lupus for many years with known beneficial results. They take a little while to kick in, but really do help most people, and if one is not tolerated, you can try the other. Are you already on Placquenil? That is usually the first step drug for lupus. Also, amlodipine works well for Raynaud's by vasodilating the arteries that go into spasm. I am on that too and it has helped a lot. Caution: it drops BP so dose must be titrated accordingly.

    Last edited by ladybud; 04-25-2014 at 03:29 PM. Reason: added

     
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