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Old 07-11-2013, 05:53 PM   #16
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Re: Lupus?

Lilshort, we'll be here whenever you want. Thinking of you, Vee

 
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Old 07-11-2013, 06:01 PM   #17
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Re: Lupus?

Thank you so much Vee! How can this be she diagnosed me w/o the other blood work no Anti what ever it is. All I have in my chart are the results from my blood work up and 2 positive ANAs my history of blood and protein in my urine and my sulfa drug allergy thats it. How can she diagnose me with just this? Arent the other tests needed? Im so confused. Then she didnt tell me anything about the disease just yea you have it here's some sterioids for your pain see, Ill refer you to a urologist and rhuemotologist and see you in 3 months to see how the steroids are working. What the what?! I just dont get it.

 
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Old 07-11-2013, 08:59 PM   #18
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Re: Lupus?

Lilshort, I'd want to know, too. I wouldn't assume the doctor is wrong, btw. While I think the diagnosis is plausible, you really should be made privy to the doctor's thinking, which should account for ALL your major symptoms.

I'd want to see the rheumatologist VERY soon (like tomorrow), to review the dx, to ask whether add'l kidney tests are needed, to demand answers on the TARRY STOOL, to find out which doctor(s) will be following you, etc.

For the dx, I'd ask to be literally walked thru the diagnostic criteria. To consolidate what you've posted, you sense you've *possibly* met:
1. kidney disorder (protein in urine)
2. ANA (albeit a low 1:80 titer)
3. blood abnormalities (your low RBC would count if it's the immunologic kind called autoimmune hemolytic anemia, caused by an autoantibody that's destroying RBC's prematurely, or causing new ones not to be made)
4. arthritis
5. *maybe* sun sensitivity (rash after being exposed to UVA/UVB)
6. *maybe* serositis (= inflammation of lining of lung or heart. I'm thinking of your sharp pain when breathing in, which the dr. may have thought indicative of pleurisy.)
7. Oral ulcerations (recurrent sores in nose or mouth)

You may have met "sufficient" criteria already: in theory, you might not "have to have" any additional criteria to sustain a dx. But even if I met this dx "on paper", I'd want more facts, particularly---

1) Whether any AUTO-ANTIBODIES strongly associated with lupus were found (anti-ds-DNA, anti-Smith, antiphospholipid, etc.), as those would certainly erase lingering doubt.

(2) What about TARRY STOOL? Is that a separate issue needing separate tests (CT, colonoscopy, etc.) and possibly separate treatment?

(3) Are STEROIDS safe when you've recently had TARRY STOOL? I'd read the Prednisone instructions very carefully, and I'd ask both the pharmacist and your doctor for IMMEDIATE input. I believe steroids can promote bleeding, so if you ALREADY have bleeding, Prednisone could add fuel to the fire.

I'm so sorry this is happening, and esp. in this way. Your recent events are difficult enough, so extra confusion really is icing on the cake. But you're clearly very sharp and are asking very good questions, and I encourage you to keep doing more of the same. Please let us know what happens next. We're thinking of you. Sending many hugs, Vee

 
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Old 07-12-2013, 01:16 AM   #19
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Re: Lupus?

Well see here's the really confusing part,..now that I've calmed a bit I can really give you the story. I asked the doc what the next step was she said I needed further testing to find out what type of lupus I had & that the rhuemotogist she was referring me to would do that. She told me my black stools were from an antibiotic I was takin for the ulcer on my tonsil, duh, why didn't I think of that lol. She also told me my BUN & creatine (I think) numbers were good & that whatever was causing the blood in my urine hasn't done any damage to my kidneys thus far. After I left out of the rm w/ the doc the nurse was reviewing my chart for what to do next for me. She was confused because the doc had written that I needed to see a hematologist & a urologist. I've already gotten the referral for the urologist & am just awaiting an appt. So I told the nurse that the doc had told me a rhuemotogist because she'd just diagnosed me with lupus. By this time I'm leaning on the wall because I can't believe what I just said so another nurse walked up who overheard the conversation & she asked if I'd had some additional testing done so I said no just my blood work up. Then the doc walked up changed my chart notes to rhuemotogist & went on her way. So the other nurse began to talk about the further testing (the Anti whatever its called), she told me the rhuemotogist would just perform these same test initially & it would save me a lot of money just having them all done there first. She told me these tests are done to rule out Lupus & that I should definitely have them done. So I'm standing there about to faint cuz I'm like I thought that's what I'd already gotten but I was just retested for the ANA. So I go over to the lab & while I'm waiting the nurse comes to talk to me & tells me how she's going through the same thing. Her doc diagnosed her with Lupus as well (but her titter was only 1:40 but listed as positive which made me think because most of what I've read states that is neg). She said shed gone to get a second opinion & that's when she'd learned of all these other tests. She told me not to get dwn about my diagnosis because there was a chance I didn't have lupus . She said if the tests I was having done we're negative then there were other tests that could be ran for other autoimmune diseases per HER paperwork from her doc one of which was sjorgens (sp?). So I'm sittin there like okay so do I or don't I have lupus? Who should I believe? What is going on here? So now I have ANOTHER two week wait for these results. I'm wondering how long it'll take for the prednisone to help with my pain. It has been getting gradually worse & I really am desperate for some relief. The pain meds they gave I can't use while I work so I'm pretty much stuck in pain because once work is over I have a family to tend to. This whole thing has been one mess after another, I'm exhausted just from all that I've gone through thus far. I really don't know what's next.

 
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Old 07-12-2013, 04:31 AM   #20
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Re: Lupus?

Good morning. Given normal BUN & creatinine, a benign explanation for tarry stools, a last-second switcheroo on which "ologist" to see next, and the nurses chiming in like a Greek chorus? My head would be spinning, too.

I suspect she doesn't know whether it's lupus. But that's sensible (in my book) because PCP's don't know lupus the way rheumatologists know it. And rheumatologists are better at choosing which "anti" tests are are needed, and at picking the lab to run them. (Many labs don't even run these tests. They're tricky & expensive. My "anti" labs are $1,700+ per set at retail, although my insurer may not remit that full price to the lab.)

I'd definitely plan on seeing the rheumatologist, and the urologist, too.

Where is your CONTINUING PAIN? The fact that Prednisone isn't helping your pain could be very meaningful. What dose are you on?

TARRY STOOL. Has it recurred, or is it ongoing? Did the dr. stating that an antibiotic is the culprit make sense to you? You could check its Rx printout, also consult your pharmacist. Also, check whether you've taken anything else that can cause tarry stool (like iron supplements). If it persists without an explanation that *makes sense to you*, I'd yell until someone listens. If pain continues (say, abdominal), I'd go to the ER.

I know this has been confusing and scary. But because lupus is an ever-changing condition with widely varied manifestations, few doctors are good at it. (Honestly, doctors in general aren't created equal.) So I'd definitely want new "ologists". How are you feeling now? Hang in there! Hugs, Vee

Last edited by VeeJ; 07-12-2013 at 04:33 AM. Reason: wording

 
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Old 07-12-2013, 07:02 AM   #21
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Re: Lupus?

Good morning,...I think that she dx me prematurely tho she may have had her reasons I think that it should be more testing done BEFORE the dx. She just gave maybe rx for the prednisone yesterday so I've taken it once I was just wondering how long before I expect any relief. I haven't had the tarry stools since I stopped taking the antibiotic. I'm still having the stomach pain & with all the craziness I didn't even get the results from the stomach bacteria test. I'm not sure if they'll give me those results over the phone but I'm going to try to call for those later. I don't have insurance right now & I'm now afraid that with all this going on my new job won't except me. I feel like I'm havin an outer body experience like this feels unreal. I'm upset because she also told me I'm overweight & that I need to lose 25lbs but won't the prednisone make me gain weight? I'm only 4'11 I can't afford to gain anymore weight. I've been trying desperately to lose the 25lbs I've gained in the last 3-4 months. I think I'm gonna visit my library for some actual hard copies on Lupus maybe it'll help me wrap my head around it more. Thank you for all your help & concern it has been a true blessing

 
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Old 07-12-2013, 07:54 AM   #22
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Re: Lupus?

WEIGHT GAIN of 25 lbs. in 3-4 months. Did you find out if thyroid tests were done? Weight gain and low-positive ANA make me think of hypothyroidism, as people with lupus tend to lose weight (except for when meds like steroids are taken.) And is water retention a possible factor? (I'm sure there are many more reasons possible for weight gain, though...)

I'm all for library books. Reading can only help. But please do take breaks, and stay connected to your normal life with family & friends. Let us know how you feel & what those stomach tests revealed. It's good talking with you, too. I sure hope your circumstances improve soon! Hugs, V.

 
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Old 07-12-2013, 07:57 AM   #23
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Re: Lupus?

Good morning, just thought I'd chime in here. I think your Dr. is putting together the kidney symptoms, positive ANA, pleurisy, oral ulcers, sun sensitivity, arthralgias, anemia and as a whole, saying you meet the criteria for lupus. Even if all other future tests are negative, you still meet the criteria. The rheum referral should be for confirmation and treatment plus ongoing care. The prednisone acts very quickly in 1-2 days often if you respond to the dose she put you on. Everyone has a threshold at which they respond, which initially may be 10-20mg/day or higher. I would see the rheum first, because I think a nephrologist (kidney) Dr is more appropriate to see than a urologist (general urinary) because protein in urine is a kidney problem. The rheum can advise you on that if you see rheum first. I think the nurses were adding to the confusion with TMI not specific to your problems. It is always scary and overwhelming to hear that you have a disorder like this. Part of the confusion may be denial and hoping, wishing it is not true. Autoimmune diseases are very complex, and when it comes right down to it, Drs don't always agree, which adds to the confusion. Part of the reason to do added tests, more specific ones, are to confirm and erase any doubts. Anti-dsDNA will be important in your case because it relates to kidney involvement. A good response to Prednisone also is a clinical confirmation to some extent. Reading about lupus can be helpful but scary. Just remember each person has their unique set of symptoms, absence of other symptoms, so no one gets ALL the symptoms listed as possibilities. What you have as symptoms initially tends to stay with you over time, with remissions and exaccerbations. With treatment, you will feel better (takes time) and you will learn coping strategies to help you live with it. Many people once on a good treatment regimen will feel pretty close to normal. Vee and I have both been through this, and remember the pain of uncertainty and flood of emotions that come with hearing a diagnosis. We women are strong beings, and my favorite motto is "when the going gets tough, the tough get going." I also like "Prepare for the worst, but hope for the best". It is normal though, at first, to feel disbelief and go thru the actual grief process. If you have a wise, trusted person to talk with, that helps tremendously. Someone outside the family, perhaps through church or a friend of a parent, etc. We are here for you too, and hope the Prednisone gives you some relief while you wait for your next appointments.

 
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Old 07-12-2013, 10:39 AM   #24
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Re: Lupus?

Quote:
Originally Posted by VeeJ View Post
WEIGHT GAIN of 25 lbs. in 3-4 months. Did you find out if thyroid tests were done? Weight gain and low-positive ANA make me think of hypothyroidism, as people with lupus tend to lose weight (except for when meds like steroids are taken.) And is water retention a possible factor? (I'm sure there are many more reasons possible for weight gain, though...)

I'm all for library books. Reading can only help. But please do take breaks, and stay connected to your normal life with family & friends. Let us know how you feel & what those stomach tests revealed. It's good talking with you, too. I sure hope your circumstances improve soon! Hugs, V.
My thyroid was fine,..I assumed the weight gain was due to a hormonal issue. I'm on the depo shot, I've been on it for a couple of yrs. I've never had any weight gain with it as a matter of fact I lost a lot of weight last yr. I was 120, I haven't been that small since I had my son. Any way I missed about 2 months because my car was dwn & I wasn't able to get to the doc thats when the weight gain started. I'm on my second shot since I started over,..I've noticed I've lost a little weight but nothin substantial. I didn't think about water weight, I have been having a lot of swelling in my hands & feet. I wonder will an over the counter water pill help me out? I might look into that. Thanks Vee

 
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Old 07-12-2013, 10:48 AM   #25
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Re: Lupus?

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Originally Posted by ladybud View Post
Good morning, just thought I'd chime in here. I think your Dr. is putting together the kidney symptoms, positive ANA, pleurisy, oral ulcers, sun sensitivity, arthralgias, anemia and as a whole, saying you meet the criteria for lupus. Even if all other future tests are negative, you still meet the criteria. The rheum referral should be for confirmation and treatment plus ongoing care. The prednisone acts very quickly in 1-2 days often if you respond to the dose she put you on. Everyone has a threshold at which they respond, which initially may be 10-20mg/day or higher. I would see the rheum first, because I think a nephrologist (kidney) Dr is more appropriate to see than a urologist (general urinary) because protein in urine is a kidney problem. The rheum can advise you on that if you see rheum first. I think the nurses were adding to the confusion with TMI not specific to your problems. It is always scary and overwhelming to hear that you have a disorder like this. Part of the confusion may be denial and hoping, wishing it is not true. Autoimmune diseases are very complex, and when it comes right down to it, Drs don't always agree, which adds to the confusion. Part of the reason to do added tests, more specific ones, are to confirm and erase any doubts. Anti-dsDNA will be important in your case because it relates to kidney involvement. A good response to Prednisone also is a clinical confirmation to some extent. Reading about lupus can be helpful but scary. Just remember each person has their unique set of symptoms, absence of other symptoms, so no one gets ALL the symptoms listed as possibilities. What you have as symptoms initially tends to stay with you over time, with remissions and exaccerbations. With treatment, you will feel better (takes time) and you will learn coping strategies to help you live with it. Many people once on a good treatment regimen will feel pretty close to normal. Vee and I have both been through this, and remember the pain of uncertainty and flood of emotions that come with hearing a diagnosis. We women are strong beings, and my favorite motto is "when the going gets tough, the tough get going." I also like "Prepare for the worst, but hope for the best". It is normal though, at first, to feel disbelief and go thru the actual grief process. If you have a wise, trusted person to talk with, that helps tremendously. Someone outside the family, perhaps through church or a friend of a parent, etc. We are here for you too, and hope the Prednisone gives you some relief while you wait for your next appointments.
Thank you so much Ladybud! Your words have really helped ease my mind. And your absolutely right the criteria add up. I'm just really trying to wrap my head around it all & I think I'm in denial. But like you said even if the tests are neg the criteria is there. These words have helped me just accept what it is & just do my best to take care of myself. I will definitely be on here for insight & a shoulder to cry on from you guys. Thank you so much! *hugs

 
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Old 07-13-2013, 01:53 AM   #26
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Re: Lupus?

Lilshort, I probably wouldn't take OTC water pills before seeing the rheumatologist, to enable him/her to see me "as is".

I'd definitely set the *rheumatology* appointment up for as soon as possible. Then let him/her sort out what everything means, incl. normal BUN and creatine depite blood in urine---maybe that finding will cause him/her to refer you to a nephrologist *or* a urologist, I honestly can't even guess. Anyway, we'll be watch for your news. Hugs, Vee

P.S. Did you get the results of that stomach test?

Last edited by VeeJ; 07-13-2013 at 02:03 AM. Reason: changed a paragraph

 
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Old 07-14-2013, 06:47 AM   #27
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Re: Lupus?

Good morning! Good point about the water pills I think I will hold off on that. I didnt get a chance to find out my stomach test results I will try to call the nurse tomorrow. It's very hard to catch someone on the phone there, it's a very busy clinic. I'm beginning to wrap my mind around everything. Ive been reading up on prednisone and the side effects even tho Im on a very low dose Im trying to make sure I know what to expect from it. My friend has been on it for years and her weight has been up and down as her dosage changes. Im worried about that because of the weight Ive already gained and Im so short. I dont want to end up lookin like an upa lumpa lol. But I must say I do feel better I woke up this morning as I was not stiff my heels & hips didnt hurt like they normally do and my hand wasnt swollen like it's been for the last few days. I was able to get up and fix my daughter breakfast w/o feeling like I was dragging my own body around so I am thankful for that. I feel almost normal, even tho I still have the chest pain when I breathe in. It was really bad yesterday, I couldnt even dance at my in-laws vow renewal I just sat dwn the whole time. I will definitely address this at my next appt. But I thank God I feel better, it's been a long time since I felt this way.

 
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Old 07-14-2013, 07:34 AM   #28
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Re: Lupus?

Hey, that is sounding like a GOOD morning for you---good news. Send us more updates when you have same---we're rooting for you! V.

 
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Old 07-14-2013, 07:46 AM   #29
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Re: Lupus?

It definitely was!! Thank you so much Vee!! Oh yea, one more thing, I feel kind of weird because Ive been having this "issue" for some time now. So when I wake up I see ants, most of the time when Im awaken unexpectedly. They're often crawling on the ceiling like in the corners. They look so real and after a few minutes of me being awake they slowly disappear. I dont know what this is about and I have never mentioned it to any of my doctors because I didnt want to be commited lol. Ive only told my husband once and the look he gave me made me not mention it again. But it has continued to happen, have you ever heard of anything like this?

 
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Old 07-14-2013, 10:13 AM   #30
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Re: Lupus?

I have, as I have had hallucinations in past when my lupus was out of control. These are called hypnagogic hallucinations, occuring either upon falling asleep or when waking up. They are a sign of some inflammation in the brain, and I'll bet they will disappear as your situation gets better with treatment. I went to Drs about mine and they had no clue what it was, so I figured it out myself over time. One was a string of cans of clam chowder marching toward me, just like ants. It was too funny and my hubby and I laugh about that one all the time, but some of mine were night terrors, scary hallucinations that made me scream and jump out of bed. No one could convince me "it" wasn't there until the lights were turned on. Glad those are gone! Nice to hear you are feeling better!

Last edited by ladybud; 07-14-2013 at 10:16 AM. Reason: left out something

 
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