I'm pretty sure I have lupus
I have been "sick " since august! I was tanning alot and all of a sudden had this really weird looking patch of what i though was exzema on my arm well then ya know being the un informed indiviual that i am i kept going tanning thinking hmmmm maybe this will get better by tanning! okay well this little patch, turned in to many even weirder patches all over my arms then my legs, chest yeah about evey where you could see! so into the doc's then in to the derm then into the internal med doc, then back to the er then back to the derm then to 2 other derms!!!!!! not to mention prednizone~~ yeah 60 mg for hmmm over a month and yet still nothing helped! o my ogd i was going to the doctor like it was a fulltime job! ( mind you i couldn 't work cuz i felt so CRAPPY) so pretty much the whole month of sept and litterally the whole month of oct i was in bed and had biopsy after biopsy done to rule this and that out but all seemed to be the same sypmtoms of lupus! all 3 derms took one look at me and said SCLE ! I had never heard of this before and went on line and looked up every rash under the sun and ironicall enough I had the exact rash!!!!!1 go figure!
so here I am undiagnosed and very frustrated! my legs look like michael jackson did when he didnt know if he was black or white ! yeah which supposedly they want to say was from hypo pigmentaion something... well I;m not convinced. i have been to the rhuem and to an endroconolgist ( which i am seeing again today ) the nuerologist pretty much evry ologist there is ! =) I am frustrated and confused how can i have allllllll the symptoms and the excat rash and yet feel like every doctor is pawning me off to each other like here you figure it out no you figure it out!!!! i am 24 yrs old and there are days where if eel like i am 94!! i ache and am really tired i feel llik ei have mono maybe im just depressed, I dont know... its hard not having an answer and the sacry thing is my dad has been dealing with some of the same symptoms for almost 6 yrs! but no rash.... they say its the joachim deseiase! I finally made an appointment at the U of minnesota hopefully they can give me answers! please if anyone knows what test i should be asking for to get done to get this figured out let me know
thaks talk more later
To review the criteria for a Lupus diagnosis; please go to "Newly Diagnosed" and the subheading "Criteria for Lupus Diagnosis." This will explain the definitions and labs needed. Also, check out webmd and type in lupus. The best reference is Daniel J. Wallace's book Lupus for patients and families. It can be found on Amazon very reasonably.
Hang in there and see a rhuematologist who specializes in Lupus. This would be the place to start to at least rule out Lupus. Make a daily log of symptoms, etc. and a list of questions to ask your rheumatologist. Take copies of the previous biopsies to your appt along with labs. Did the rash go away with the Prednizone? Until you have a definate answer, I would slather on the sunscreen, cover up and wear a hat. Many of us who are photosensitive stay out of the sunlight, tanning beds, and even flourescent lights because we react to them.
You are not alone, many of us have been on the merry go round of doctors who could not decide what it was. Don't give up, and you are going to have to push harder than you have ever before to find the doctor you are comfortable with and will patiently answer your questions.
Keep us informed and don't give up. I hope you feel better and you are not alone.
yes it did seem to get better on prednizone, the problem was that the 1st dose was only for 5 days ( they said oh this should clear up in a couple of days) so when it stopped I had an extreme flare up. then they thought because my wbc was so high that i had an infection so they statrted me on an antibotic ( well by the 3rd day off of prednizone i felt like a bus hit me and my rash spread ) so back on the prednizone! this time it was 60 mg x 5days decreasing by 20mg on 40mg is when i felt the best I had felt in a long time. but as soon as I started to feel better my dosage dropped and I felt sick again.. not to mention i was on clartin 2xday and hydrochlorine? its a seditive antihistamine? at night. and the tycinamolone 2xday! plus advil for pain/headache and or tyenol for the mild fever. I litterally have been through sooooooo much and never want to go through it again. it scares me to even think that this may be something I will have to deal with for the rest of my life.
Take one day at a time; that's what most of us do or attempt to do. Prednisone comes in tablets, but then you can get the cortisone shots. Personally, I prefer the shots due to no weight gain, and it's not being absorbed by your organs. They are called medrol cortisone shots or Kenalog shots; they are awesome when you are in a flare.
Have you seen a dermotologist? What does the rash look like? Well, I hope you feel better soon. Keep us updated okay?
going back to the derm on tuesday and back to the rhuem on monday!
I hope these guys can figure this out, I need some peace of mind, if i dont have lupus great but if i do then give me some meds! direct me in the right path to take care of my self.
ps. i still am struggling with this rash, its so frustrating i just wish it would go away!!!