hello i have a few questions for you all

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randynoguts
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Date Joined Jan 2003
Total Posts : 6180
   Posted 3/16/2011 4:13 AM (GMT -6)   
  let me preface this with i am not new to chronic disease. i have had crohn's disease since '84. many surgeries etc.. and have been on TPN for over 11 years. i know some people think that everything that happens to them is related somehow to the particular disease they have. not me.
 
  i have some issues that i am coming to think may be Lupus or Lupus like.
 
  some of the medications i have taken and do take "may " cause a lupus like reaction. so here goes my list..for the last few years i have,
 
   1. unexplained fevers that always head north of 103, sometimes to 105.
   2. roving joint pain like left knee, right hand. then will switch a couple days later, pretty good pain, makes it painful to walk or even steer the car.
   3. like i saw on another post, splinter hemoraghes, (checked lots for ENDO) always negative.
   4.  trouble getting to sleep, but once asleep, dont want to get up.
   5.  electric shocks as i call them, be like, darn i got shocked!arms and legs.
   6. enlarged spleen, shriveled pancreas, (supposedly due to my crohns and the TPN.
   7. progressivly worse eyesight all at once several years ago (age probably).
   8. little tiny blood clots on the outside of my lungs (found when checking for fever source a few years ago. come and go. each CT has them in differant spots, but always on the outside layer.
   9.  bone things,like, osteo from all the steroids over the years, but who knows.
   10. probably more that escapes me at the moment.
 
  any how the fevers are whats killing me. virtually NO symptoms with the heat, just a spike stays up for a couple days and goes just as  quickly.  
 
   ive been tested for everything from malaria, endo carditis, latent infections, (blood cultures all the time , all negative but once , when the IV drs gave me and infection during a line change)  so im at a loss and apparently the drs are too.  imean they spent a ton of time and money trying to figure it out but no luck.. i dont even go to the dr for the fevers anymore , i just call and let them know i have one.
 
 
   so you of wise council and deep thought what do ya think. lupus is maybe the only thing they havent checked for ( they did lyme disease too)  smilewinkgrin turn tongue scool cry skull smhair     my feelings on any given day !
 
 thanks much randy

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 3/16/2011 8:01 AM (GMT -6)   
Hi randy, You definintely have a lot of symptoms that could point to lupus. It's just so hard to tell and lupus is just so hard to know as its called the great imitator. But I have to agree a lot of your symptoms sound like they would fall into lupus or into at the very least a close cousin (ie stills, etc). The thing about lupus and fevers is that mostly they are low grade except when you are having a co-infection with your illness, then those are the times that the high fevers can come and can be very dangerous. Lupus and other similar diseases are very frustrating because they can take many years to get a diagnosis, sometimes the symptoms precede the blood results and doctors tell patients that they are not sick or have other things going on before their tests tell a different story or their health takes a dive.

You say you are on TPN, I'm sure they have made sure that you don't have any kind of infection running in your body from your lines that may be a cause for your fevers (and possible enlarged spleen) as well.
Dx: IBS, Diverticulosis, Idiopathic Acute Colitis, SLE, Sjogren's, Localized Scleroderma, Raynauds
 
Meds: Plaquenil 400mg/day, Pred 5 mg/day, Topamax 100mg/day, Lodine 500mg/day, Protonix 40mg/day Methotrexate 10mg/week, Arava 20/mg (what next???), Vicoprofen PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6180
   Posted 3/17/2011 5:41 AM (GMT -6)   
yep over and over, culture after culture swab after swab. ;o) have had central ines since dec '99.. only infection i ever had was cause during a line change! dumb azz drs .gave me a nice 1 inch long clot in my right jugular too. so no more lines on that side. also checked for lymphoma, etc.. i have had enlarged lymph nodes removed during some of the surgeries, but nothing conclusive . thanks Dbab

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 3/17/2011 8:11 AM (GMT -6)   
Hi Randy,  I don't know why but your symptoms keep making me think of adult onset still's disease which is so very similar to lupus but with one major difference being high fevers.  It is very rare though and its my understanding that its even harder to dx because its more of an exclusion when it comes to blood tests and the dx comes more from the criteria of symptoms but it may be something you may want to look into (maybe just to see if you can relate to it).

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/17/2011 10:46 PM (GMT -6)   
Randy, I'm assuming your bloodwork has included checking inflammation markers - if your fevers come from inflammation my guess would be Lupus, BUT it has also been my observation that all the autoimmune disorders seem to "run together" after a certain period of time and become virtually indistinguishable. I'm also guessing that they looked at your ANA?

Symptoms 1,2 & 4 are more lupus-like, ESP #2 -- all the other things can, like you say, be induced by the meds you've taken for years. What are you currently on? It's entirely possible that you current med mix is the same thing they'd give you if they dx Lupus, which like dbab says, is often what they call auto-immune when nothing else quite fits -- there is NO definitive test positive or negative for lupus.

Another question is, what kinds of doctors are you seeing? Lupus is best treated (and diagnosed) by rheumotoglists - while others claim to know all about it, they are not specifically trained in its multiple aspects like the rhumies are.

Hope that helps a little,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/18/2011 5:48 PM (GMT -6)   
I feel for you!! Ask for a complete metabolic panel to see what exactly you are deficient in (minerals and vitamins) and your ANA and what is your Sed rate which probably runs high due to crohns. It is hard to dx Auto immune esp when you already have one. Do you go to a Rheumy? Lou Gerhigs is popping into my mind with the sharp nerve pains.. it has very similar pattern as lupus, but just like lupus hard to diagnose. I wouldn't take my word for it as i am not a doctor. i am sorry you are having so many unexplained symptoms, and which ones can be explained by a crohns flare, and many can not.

I wish i had the answers. Wishing you joy, happiness and less pain.

please keep us posted as you find out information. you are in my thoughts.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6180
   Posted 3/19/2011 6:11 AM (GMT -6)   
thanks all.. sed rate is always a bit elevated, met-panels are done often for my TPN mgt. drs are PCP, Pulminology, GI, ID, internist, surgeons of all scopes, even transplant guys at the U of Nebrakska back in '05 to be evealed for small bowel trans. ( not sick enough) they kinda want ya to be dying soon .. didnt want to try it anyway...just went foer th experiance.. and boy what an experiance it was..;o) have seen a rhumatologist 20 years ago for the joint pain , but not since,, he said at the time it was just crohns related arthritis.. will check further.. and ill look up stills too.

k.muy
New Member


Date Joined Mar 2012
Total Posts : 3
   Posted 3/18/2012 12:57 PM (GMT -6)   
Definitely look into still's. I was disgnosed with it six months ago. Tested for EVERYTHING....High fevers that could go just as quickly as they'd come. Extreme joint pain on and off in Every joint. Rashes, itchy skin, you name it. Still's is in the autoimmune category. Because you already have an autoimmune disease, you are more likely to have more. I personally have IBS, psoriasis, asthma and who knows what else at this point :p. But all of those are autoimmune diseases, and sometimes your body just decides to start attacking itself. I am on Prednisone and Clarithromyasin for it. Hope this helps! Ask your doctor to see a rheumatologist about these questions?
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