Could I Have Lupus?

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gtmriviera
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Date Joined May 2007
Total Posts : 338
   Posted 1/26/2008 7:55 AM (GMT -7)   
I am already in the forums for Parkinsons and Prostate Cancer and did not expect to be posting in any other forum, but life continues to leave little reminders that at some time in the future we all have a baloon payment due on the benefits that we have received during the enjoyment of our younger years.  In my case I am 58 years old and I was diagnosed with Parkinsons in 2006.  I am mostly affected with a tremor in my left hand which is mostly under control with medication.  In 2007 I was diagnosed with prostate cancer and the prostate was removed on October 4.  My psa number is now "undetectable" and, although the doctor states that I had cancer throughout the prostate itself, he does not feel that the cancer had escaped the prostate and I have never had any chemo or radiation and this is not planned at this time.  My only other ongoing health problem is mitral valve prolapse, diagnosed in 1985, and this is apparently having no affect on me and I take no medication for it.  My recent lab tests show a slow but continuing decrase in white blood cells and my gp says that it is not low enough yet to need a marrow biopsy.  I am aware that a possible reason for this condition could be lupus so I am looking at possible reasons that I could have lupus.  My history includes two years (1981-82) of working in the oil fields where I had frequent skin exposure to solvents,etc.  In 1996 I had an ongoing sexual relationship with a woman who had lupus.  I am now working in a very stressful occupation and have of course had a stressful life in the last couple of years due to my health problems and also those of my parents.  My father passed away a month ago and my mother is also in poor health.  Other possible symptoms related to this could include an ongoing, but minor, rash on my face, small red sores on my lower legs which have been there now for at least a couple of years, pain and stiffness most of the time in one knuckle of my left hand, a recent episode of really bad swelling and sores on my tongue and inside cheeks (this is mostly gone now) and other things which indicate an immune problem.  I have been tested many times and I think that I can be sure that I don't have Aids.  My recent lab tests were done just a few days ago and I will do it again in April.  My questions are many, but obviously I am worried that I may develop Lupus.  Does any of the above suggest to you that I may be at risk for Lupus?  Should I demand more immediate tests?  I did have pneumonia after surgery in October and possibly test results could have been affected by my having had antibiotics in the recent past?  I am trying to keep this as short as posible so I will simply say that any input would be appreciated.  Thanks.  Forgot to mention-I frequently donated plasma for about three years, ending in 2006.  More-I've scanned over a few of the postings in this forum.  Maybe I should mention that I have arthritis and DDD, some history of IBS and recently I've noticed some numbness on the end of my left thumb and first finger.  Things that make you go hmmmm.

Post Edited (gtmriviera) : 1/26/2008 9:09:39 AM (GMT-7)


Ginny
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Date Joined Feb 2003
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   Posted 1/26/2008 9:16 AM (GMT -7)   
Hi there,
 
First, I need to squelch a couple of points you mentioned.  You can not, in any way, contract lupus from another person, or by donating blood or plasma.  Lupus isn't contagious.  So those two possibilities are gonzo. So is the anitbiotic theory. 
 
Everything else you mentioned, could be lupus.  But they could be loads of other autoimmune diseases too. Lupus mimicks many diseases, and vice versa.  You need to see a rheumatologist, who can order a lupus blood panel.  Even with those blood tests, you might not have enough symptoms to warrent a lupus diagnosis.  For most of us, the diagnosis took many, many years to get.
 
www.lupusfoundationofamerica.org, is a good resource to tap into for more information. 
 
Your mitral valve prolapse is a common occurance in lupus as well.  I have it too.  In lupus, it's called Libman Sach's Endocarditis.  You could look that one up as well.
 
I'm sure you'll get more responses to your questions.  I hope you can get the answers you need in short time!
 
Ginny
 
Oh, just for interest sake.  Lupus is the EXACT opposite of AIDS.  AIDS is an immune deficiency.  Lupus is a hyper-active immune system.
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


gtmriviera
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Date Joined May 2007
Total Posts : 338
   Posted 1/26/2008 9:30 AM (GMT -7)   
Thank you for the information.  I was wondering if my gp or neurologist couldn't order this same bloodwork.  Obviously the interpretation of the results should be left to an expert, but at least the lab work could be done immediately.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/26/2008 10:07 AM (GMT -7)   
Your gp or neuro won't order the lupus blood panel tests.  They'll refer you to a rheumatologist.  This won't happen quickly though.  Most rheumatologists have a few months wait list.  Once the blood work is completed, it takes on average 3 weeks to get the results back. 
 
When you mention the word "lupus", things get very complicated and you might run into road blocks, or doctors who want to discount all your symptoms and tell you, even before the tests are done, that it isn't lupus. That is a chronic problem we all have had when dealing with this dang disease.  I just want to forewarn you so this possibility doesn't surprise you!
 
One thing you can do is keep a daily diary of all your symptoms, so that when you do see the rheumy, you don't have to try and remember everything.  A diary and pictures of your rashes, mouth sores, etc, are VERY helpful to a doctor.
 
Have a good weekend,
 
Ginny
 
Oh, the forum is always a bit quieter on weekends.  But others will be along to help next week!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 1/26/2008 11:05 AM (GMT -7)   
I have found it best to give my list of symptoms to the rhuemy rather than hand them a diagnosis.

They are the experts, and I really do want their expert opinion before I start giving them ideas. There are several other diseases and conditions that come with similar symptoms, and I would like to make sure everything is considered. If they go directly to a diagnosis suggested by a patient, I would not be as confident that they, as doctors, are doing adequate investigation.

Be sure to take pictures of rashes or sores, as these things have a habit of healing up right before scheduled appointments! And of course, the list of your other symptoms. Be as simple, clear, and accurate as you can be in identifying symptoms. Make sure not to limit what you list to what you think fits w/lupus -- I close my eyes and take a "body inventory" from the toes up -- to make sure my list is complete. Even other symptoms, like -- I twisted my ankle -- may not seem to have any relationship, but may be valuable clues to the doctors.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 1/26/2008 2:06 PM (GMT -7)   
Thank you Lynnwood.  May I pose a question?  It has been suggested that a person cannot have both Lupus and AIDS.  I doubt this.  I would think that a person could have either one and then the other.  What is your opininion?  Thanks.

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 1/26/2008 3:44 PM (GMT -7)   
Of course one can have both AIDS and Lupus. One is an STI that effects the immune system, and the other is an autoimmune disease. You get AIDS from other people. You get lupus from an internal malfuction of the immune system (it is not contagious), whether it is do to stress, enviroment, or genetics is still not known. At 58 it is probably a good idea to see a rhymie anyway.
Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...


applesk82
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Date Joined Oct 2003
Total Posts : 262
   Posted 1/27/2008 12:30 PM (GMT -7)   
yes, a trip to a rheumy would be a really good idea and make sure you give him or her a list of the symptoms that you gave us. as for the antibiotics the only real affect on the bloodwork would be that of a false-postive for lupus depending on the antibiotics you were taking. it happened to my sister while she was pregnant and was on penicillin and she tested false-positive for either syphillis or lupus but she called me and i told her that the antibiotics would do that, which helped her relax because she got really scared when the doc told her that.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 1/27/2008 4:54 PM (GMT -7)   
I really appreciate the information.  As many of you are, I'm juggling different doctors, each of which has a piece of the puzzle, and I seem to be the team coach as well as playing the part of the football.  Wow is that a mixed up sentence or what?  Anyway, my doctor for the prostate cancer apparently doesn't even know about the white blood cell count or at least he hasn't mentioned it to me so my next move is to be sure that he is aware of it and go from there.  Thanks.

KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/27/2008 7:45 PM (GMT -7)   

Hi Apple, I was wondering if you can elaborate on the antibiotic causing a false positive? Is it only certian antibiotics?

You mentioned  penicillin? Is that the only antibiotic that can affect the results?

 

Thanks


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/27/2008 7:56 PM (GMT -7)   
That is the first I have seen or heard of an anti-biotic causing a false-positive for lupus. I doubt that is the case, as "Lupus Tests" are on antibodies and inflammatory markers that are NOT affected by antibiotics. Additionally, lupus is NOT diagnosed just by blood tests -- you can have it without having any positive blood tests.

See the link in my signature for 4 of 11 -- you need to have only 4 of these 11 symptoms & test results to be dx w/lupus.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 1/28/2008 9:03 AM (GMT -7)   
your right lynnwood i got my info mixed up, antibiotics like penicillin cause a false-positive for syphillis and some doctors order a syphillis test "because some lupus antibodies in the blood may cause the test to be false-positive. A positive test does not mean that a patient has syphilis. Again, all these tests merely serve as a tool to give the doctor clues and information in making a diagnosis". i actually got that from HealingWell.com. i am very sorry about my mistake.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 1/28/2008 11:55 PM (GMT -7)   
GTM, I think Lynnwood is guiding you in the right direction. (1) Get organized. (2) Get copies of all your medical records. (3) Make an appointment with a good rheumatologist. Take him or her your records, a list of every single symptom you have or have had whether or not you think they are pertinent. Mention the stress of the loss of your dad and your mom's bad health. But do all of this on paper. Doctors will cut you off if you start to ramble orally, but if you have written down your list of symptoms they will read it and put it in your chart. (4) Next, list all of your doctors and their phone numbers and addresses. (5) make a list of all your previous surgeries and medical conditions. (6) finally, list all the meds you take.

A lot of what you are going through sounds like what I went through. I was under a great deal of stress, had trouble finding a doctor in whom I had confidence, I lost my parents within 7 months of each other, and I felt horrible and had terrible pain. It also felt as though no one was taking me seriously. I think this is pretty common with folks who have autoimmune disease. It took a year and three rheumy's before I got a firm diagnosis.

Expect the process to take some time. Occasionally people with autoimmune disease are diagnosed quickly but usually that is not the case. Regardless whether or not you have lupus, you should see a rheumatologist for your arthritis.

Lots of luck!

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/29/2008 9:04 AM (GMT -7)   
So Does antibiotics cause a false positive ANA ?

Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 1/29/2008 1:53 PM (GMT -7)   
KaAl said...
So Does antibiotics cause a false positive ANA ?


Nope.

KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/29/2008 4:34 PM (GMT -7)   
Are you sure lynn? I just did research on it and what I found out was that certain antibiotics and other medications CAN affect you ANA results.

Where did you get your information from?

Thanks!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/29/2008 7:03 PM (GMT -7)   
Sorry, it's somewhere in the last 8 years of lupus research & reading I've done -- can't replicate it!

Med's yes, can affect ANA reading's as they may be working on Lupus (like plaquenil), but not antibiotics.

I guess we could have everyone poll their doctors....and see what the majority says...

KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/30/2008 8:04 AM (GMT -7)   
Everyone poll their doctors?.....Yes, that is a great idea! It would be interesting to see what the results would be.

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 1/30/2008 6:00 PM (GMT -7)   
Certain antibiotics can cause drug induced lupus and in some cases clinical lupus, that is the real thing that doesn't go when the offending drug is stopped. The sulfonamides and maybe tetracyclines especially minocycline for example. That means a false positive ANA.

The business of the false positive ('lupus')/syphilis test perhaps has something to do with antiphospholipid antibodies. VDRL tests can be false for syphilis because of the presence of these antibodies. This is misleadingly called the Lupus anticoagulant, LAC, simply because they were first identified in people with lupus but actually more people without lupus have them. One third to one half of those with lupus may have these antibodies but many never suffer the clotting disorder with which they are associated. Further tests need to be done to find out if these antibodies are due to autoimmune activity or infections or some other disorder. So they are false positive for syphilis because they aren't caused by syphilis, but if found to be autoimmune in origin they might play a role in diagnosing lupus. One of the conditions in which they might be elevated is pregnancy itself.

I don't know if the antiphospholipid / anticardiolipin antibodies could be caused by antibiotics.

Since ANA isn't specific to lupus, there are numerous reasons why it might be elevated, either chronic disease like thyroid or infections. Some healthy people have a raised ANA. A raised ANA alone means very little - it all depends what signs and symptoms there are and of what disease. Or other explanations. However the ANA is usually only tested when people go to the doctor's because they are ill.



Bee

gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 2/2/2008 9:23 PM (GMT -7)   
I appreciate the information.  After further research and talking with my gp we decided that I should see an oncologist and I will do that on 2/11.  Here's hoping that it's a big waste of time!

sussie
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/6/2008 8:49 AM (GMT -7)   

hi im a 29 year old that is at the moment waiting to find out if i have lupus.  I have tested positive twice for lupus anticoagulant twice during my two pregnancies which both ended in deliveries before 30 weeks.   i have been suffering from a chest infection for 3 months, and just cant shake it, my legs are hurting all the time. Every night i am up late because the pain is starting to get really bad and it stops me from sleeping.  I have had a really bad rash for the last 4 years, always gets worse when i am run down.  My mother has krohns and has had it before i was born. My hair is falling out and becoming very dead very quickly.  As a young girl and up untill i had surgery to fix it, my monthy cycle basically went for the hole month ( only ever had 4 days off). i have had dizzy spells and actually fainted for the last six months. I spent most of my time feeling like death warmed up and i really struggle to get up in the mornings. i have bruises all over my body and i cant even remember ever knocking it on anything.  I have had bad memory problems, when normally i would be on the ball. There are lots of things that are and have happened to me medically that makes the docs think its lupus.  We are holding hope that its just side effects to something else but i dont want to hope to much. I really dont know lots about lupus and really cant give you any advise.  i will give you hope that its allright and that you can get the help you need

sussie


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 3/7/2008 5:06 PM (GMT -7)   
I'm sorry to hear about your situation and I wish that I could help.  Unfortunately I seem to have gone off in another direction and still don't know much about lupus.  I recently had a bone marrow biopsy and I don't have the results yet.  In the meantime I have added carpal tunnell syndrome to the list of things that I have been diagnosed with, but that is so minor that I don't even think about it.  Thanks for your concern and good luck to you.

gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 1/18/2009 8:34 PM (GMT -7)   
It took me a long time, and seeing a hematologist, to find the answer.  He did a bone marrow biopsy and gave me a diagnosis.  If you have a falling white blood cell count, look up ITP.  It's not great, but it's a lot better than some of the alternatives and it explained a lot of things that other doctors couldn't.  I just thought that this might be helpful to someone else who may have the same symptoms.--the Riviera guy 

PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 1/19/2009 9:04 AM (GMT -7)   
Riviera guy,

Thanks for getting back to us to let us know what you finally learned. I'm grateful to folks like you and the others on this forum for the information I get here. I hope you're doing ok.

By the way, you mentioned having a relationship with a woman who had lupus and I'm sure you know that lupus cannot be "caught" from someone else. Many years ago I had a friend who had lupus and once she took a sip of my drink and I was afraid to drink from that glass. It was once I became educated about lupus that I understood that it is not contagious.

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Post Edited (PattyLatty) : 1/19/2009 9:09:09 AM (GMT-7)

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