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Avatar universal

my dr. hasn't come out and said i have lupus,but she is sending me to rheum. and i had postive ANA, anti-smith.

Well to start out i've bee nsick since feb 2008. I thought i had the flu. To get out of bed everyday to stand on my feet and walk just hurts!.  all of a sudden my joints hurt and crack, my feet,legs and hands tingle and hurt., my lymph nodes have been swollen since feb., I get chest pains, I now have blood in my urine and lower back pain, i can't eat without getting nausea, i have had pneumona for almost two months, to be honset i feel like i'm dying a slow painful death. I've been waiting 3 months to get into a rheumatologist, last week i had to see urulogist. I just don't know how i can keep getting worse and i'm not being treated for Lupus. Also my hair is falling out, there's something wrong with my red blood cells. Does a rheum. have to be the one to treat you for lupus? Do i have to end up in a morge or hospitol to be treated? I'm so tired everyday, i  have this rash on my chest for over two weeks now. I couldn't even enjoy the summer i was so sick. The one thing i don't understand why my Dr. won't say i have lupus when the test was postive, anyone get that?
11 Responses
484098 tn?1259531132
You sound like you are in such bad health and spirits.  I personally think you need a new doctor...but will that change when you go to the Rheumy??  I could NEVER get a regular doctor to say I had lupus, except the very first one, who was an internist or whatever that is.  It was actually his RNP that diagnosed, and he later confirmed after we argued with her/him.  Anyway, the Rheumy saw the positive results and said NO, I didn't have Lupus or Sjogrens.  Many millions of doctors later, and 9 years, I finally, this past june 2008, was diagnosed by a new Rheumy as having Lupus, Sjogrens, and Autoimmune Hep.  So, to put it bluntly, you will be going a long time.  Have you called the Rheumy's office and told them how sick you are?  Ask to come in as an emergency patient??   Are you staying out of the sun?  What about going to the ER?   Have you had your Thyroid checked?  With blood in your urine, I would think it would warrant an ER visit.  Anyway, what you could do, is DEMAND that you doctor give you Plaquenil and Methotrexate.  Tell them it's just a stop-gap measure till the Rheumy can check you out.  My rheumy just told me last month that she doesn't understand why PCP's don't help these patients and prescribe these meds while they wait to get in.  She said most of her patients come to her with sob stories how the PCP said if the Rheumy doesn't find anything wrong then they need to see a shrink cause it's all in their head.  She laughed and said, "All they have to do is treat them with Lupus medications, and the Rheumatologist can decide later what to change."  I went 9 years without treatment and she was angry about that.  What's really sad is that first Rheumy said I didn't have any of those diseases, but the blood tests were worse at that point than they are now, yet now I get told that I am positive for these diseases!  It baffles me to no end.  Can you try a different Rheumy to see if you can get in sooner??
Avatar universal
my dr has tried to get me into another rheumy, but they say they aren't taking fibro patience and they call them back and tell them it's for Lupus not fibro. But they won't take me. Rheumy are so hard to get into where i live. you are right i'm getting to the point where i'm in bad spirits, cause i barely have energy to play with my 3 year old and nine year old. I have stopped working, i have to talk myself into going to gorcery store, I'm in such pain and SO tired.  I really like my family dr. i've been with her since i was 15. She's very easy to talk to. I just don't get why it's so hard to figure out if a person has Lupus or not it's been around for so long. I didn't realize you can have more then one autoimmune disease. thanks for responding to my Question iand i hope we talk again.
Avatar universal
i forgot to let you know that i went Er when there was bloob in my urine and they told me to go see my Dr. so they were no help at all!!
484098 tn?1259531132
Sounds like you need a different ER altogether!  What did your doctor say about the blood in your urine?  

If you google the words "autoimmune diseases" you'll pop out a list of HUNDREDS of them.  Mayoclinic ******* has lots of info also.  But you shouldn't have to wait so long.  If you have a doctor you like, ask her to PLEASE prescribe Methotrexate and Plaquenil for you, so you can feel relief till you see the Rheumy.  The Methotrexate is a chemo drug that kills the cells that are causing autoimmune issues, and the Plaquenil is an anti-malarial drug that has been found to work very well for killing pain for autoimmune issues.  I started the plaquenil and 99% of the pain disappeared within a week or two.  I had to start the methotrexate (MTX) because the joints were still hot.  I could be on it for life, but it's worth it.  I started taking B Complex vitamins and folic acid and a multi-vitamin (doctors orders) to counter-act the fatigue and anemia that these drugs can cause.  I feel much, much better.    Please talk to your doctor and ask her to prescribe these as a stop gap measure.  I think you'll thank her profusely!  
484098 tn?1259531132
also, see if she can get you on Zithromax for the pneumonia.  It's super strong, and if it's taken as directed, EXACTLY, it will kill the pneumonia and any other bacteria you have lurking in your body.  Bacteria infections can cause allllll that pain also!  
Avatar universal
I was on Zithromax and it didn't work (usually it does for me) then on clarimycin, and one other one. About the blood in my urine i have to go back to urulogist in Nov. and have a scope put inside to look at my kidney's and bladder. I have to make sure my kidney's aren't failing. I don't get why the long wait if they believe my kidney's are failing. It should have been done the last time i was there! My brothers girl friend has Lupus and found it when she ended up in hospitol for kidney failure. I really don't want that to happen to me.  you said you start a b complex is that because your vitamin b12 is low? I'm on 1,000mcg a day cause i have low b12. Methotrexate is chemo, is it just like what they give for cancer or just related? Plaquanil what anti-malarial? Is it a pain med? I thank you so much for the imfo and writing back to me!!
354604 tn?1328555666
My heart's breaking reading about how you've suffered without proper care! Yes, the plaquenil is an anti-malarial, it was used in extrememly high doses during WWII, but they found it was the only thing that stopped the rashes with discoid lupus, which is what I have. I wouldn't wish what I've been through on anyone! And honey your story sounds almost exactly like mine! I had TB type symptoms; night sweats, exteme fatigue, I was down to skin and bones the first couple of years. The dr's thought I was dying and it took them four months to diagnose me; my dx came from an oncologist. It was all very scary, I was certain I was on my way off of this rock. I had a disease that was a precursor to my lupus; the short name for it is kikuchi fujimoto. Then I developed lupus as a spin off to that, complete with the hair loss and skin rashes! You need to get on plaquenil asap!!! I take 200 mg 2x day with no side effects. It's the only thing that controlled the hair loss and skin rashes while I continued back and forth to multiple doctors. It was finally a dermatologist that did the proper testing (an immuno stain biopsy) that diagnosed my discoid lupus. I've since been told that I never should have been dx with systemic lupus. But I do have the aching joints, fatigue, and still have lesions on my skin - on my face, of course. I didn't have a zit until I was 35 y/o and lupus has absolutely wrecked my complexion; it's been very humbling. Let alone the fact that lupus is one of the invisible diseases... when the rash gets under control we don't look sick! The kikuhci started out with my body not responding to antibiotics; my lymph nodes were really swollen and did not respond to Any antibiotics. I had the cold/sinus infection & symptoms for months! I've never taken the methotrexate, didn't know it was a chemo mod? The plaquenil isn't a pain med but I've taken so many anti-inflammants that my stomach is a wreck. My rheumy is nice enough to give me pain meds every month with the plaquenil and they're actually like a triple latte for me; they definitely don't make me nappy.
I haven't logged on for quite awhile but a couple of the gals on here have been extremely helpful and a great support for me! It looks like you're going to have the same experience! It's those that have been there that seem to know more about to advise us; some, not all, people on this forum, are very knowledgeable - much better informed about the ANA / Sed rate testing etc. I have copies of all my labs though.
The summer is the worst time of year for me ~ the heat is just exhausting. My rashes were on my face arms, and back between my shoulders, and some on my chest.
The plaquenil is kind of a trial and error ~ and they need to let you try it!! Soon!
If paying for your meds is a challenge there are pharmaceutical companies that will provide the plaquenil for you ~ I think Sanofi provides it. Best Regards ~ W.
288089 tn?1232739736
I was diagnosed with SLE in 1994.  My Rhuemy put me on Plaquenil and it seemed to help a lot.  I had no problems with any major organs at all.  So, in April 2007, I stopped taking it because I thought I was doing fine.  (I'm one of those people that absolutely HATE taking meds.)  Anyway, that was a bad idea.  I was only taking Ibuprofen for the pain & towards the end of Dec, my dr thought I was taking too much, so he had me stop it all together.  By Jan 10, 2008 my kidneys were failing.  My point is, Lupus is not something to mess around with.  Unfortunately, I learned that from experience.   Ask your pcp to put you on Prednisone (cortizone/steroid) while you wait.  It should at least help with the pain & the rash, perhaps even your pnuemonia.  I am on Cellcept now, an only 5mg of Prednisone, but whenever I had a big flare up, my Rhuemy put me on anywhere between 30 & 60 mg.  I hate taking that much because of the side effects (fat face), but I feel like a million dollars when I do.  It's certainly not a long term drug because it can do more damage than the disease itself, but if you start taking a big dose, after a week or so you can taper off of it.  NEVER just stop taking it with out tapering it off or you will be right back where you started, if not worse.  Hope this helps.  I might have more answers if you have more questions.  Good luck with everything!

BTW...it took my dr.s 6 years to diagnose mine.  And he only tested me because my mom & sister double teamed him & made him do it.  I had multiple symptoms, but they can also be their own diseases seperately.  I don't really know why it is so hard to diagnose?  But you definately need to see a specialist.  
Avatar universal
My Dr had me had preisone for about 3 weeks.  i was in alot less pain and my lymph nodes went down. As for it helping my pneumonia it didn't. In that 3 weeks i gained 3lbs. i was shocked but have since lost it again. I went to my Dr yesterday cause i have been running a fever over 100* and been having lower back pain on top of the blood in urine. She said she was going to send my urine out for test to make sure there is no infection that there test didn't show. She also said she's going to try and get the Uruologist to get me in sooner then Nov. 24th. I told her I think i have a huge PLease make me wait sign on my forehead (lol). I talked to her about tring some Meds. but she really want to figure out why the blood in my urine 1st. Grrrr!!
I was on the American foundation for Lupus and read alive chat talk and there was a rheumie on there who had said Plaquenil is really the best and safest drug there is for Lupus. It seems everyone is going on Plaquenil and cellcept or methotrexate. Must be it's doing something right!! When you had problems with your kidney's  did you pee more or less? thaks for the response
288089 tn?1232739736
I peed less.  I hardly went at all.  And when I did, it was foamy.  I also had TONS of fluid retention & nausea.  Unfortunately, I have heart troubles as well, so my dr.s were wasting time raising my BP meds & Lasix instead of checking out other causes of my high blood pressure & fluid retention.  I pretty much self diagnosed my own kidney failure; thanks to the internet, of course.  Keep looking for info...the more you have, the more of a chance you have at figuring this thing out.  Dr.s aren't very good about telling you things unless you ask.  I wish you well.  
Avatar universal
OMG i go pee about every 6 hours or more. A few days ago i went over 12 hours. It's dark ,foamy, and smells. (Not a bad smell just not pee smell) I try and write things down when something new happens. I noticed my Dr. keeps most her notes to herself.take care and thanks
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